PLEASE HELP MY DS!!

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This is a really long post, so please forgive me. We are desperate right now and need help. I am currently going to try to see if I can contact Dr. Sampson- if anyone has any ideas on how to do that please let me know.

Here's our story:

On Friday morning, ds said that he had a stomach ache, which MAY or MAY not be a factor. It was his 2nd day back to school since Christmas Break, so we figured that he just didn't want to go back to school. At 3:30, as I was walking out of work, my daycare person called. She said that Ds had woken up from nap coughing, and now he was saying his stomach hurt. I rushed to the daycare to find Ds lying on the floor screaming that his stomach hurt and that he needed a treatment. I asked if he was having trouble breathing or if his lungs hurt, and he said no. I attempted to give him a treatment and the nebulizer was broken. He was crying so hard, that I just called 9-11. The ambulance came and said that his pulse-ox was fine and he didn't need a treatment. I told them to give him one anyway, which they did. When they were done they said that he could go home because he was fine. When he tried to stand up, he fell over and started vomiting. I asked for him to be taken to the hospital. In the ER his vomit had a red tinge to it. I asked about it, and they asked what Ds had eaten and he said, "Jello". I asked if it could be blood, and they kept insisting it was Jello. Then the diareah started. I can't even describe to you the HORRIFIC amount of it that came out, and it was pure liquid- bright red. It was coming every 3-4 minutes at some point and an adult diaper couldn't even hold it. They were giving me blankets to put under him. I would estimate that he lost around 2 gallons of fluids (yes, 2 GALLONS). The ER dr gave him an IV and after about an hour of this, he said that Ds could go home. He wrote out the release papers and took his IV fluids out. He told dh to go out and warm up the car. While dh was warming up the car, I held a blanket out to the nurse. I asked her if she would take her son home with this amount of bloody stuff coming out of her son. I KNEW this was wrong, and I said so. But what can you do?! The nurse said, "Let me talk AGAIN to the doctor to see if he will consider a stool blood test". The doctor came back and tested the stuff, and SURPRISE it was blood. They decided to "watch him" for about an hour. He then began having a seizure. It was the scariest moment of my life. I have held both parents as they died and I have never been as frightened as I was at that moment. I ran to the nurse and told her he was convulsing, and she yelled, "OH S**T!!" FINALLY some people started moving around there. I can't tell you how long he seized, but I can tell you to me it seemed like forever. The ER doc says 3 minutes, but I do NOT believe that. Well, they stopped the seizure. According to my sister (who is a nurse in the pediatric intensive care unit in a different hospital), they had to use 4 times the standard amount of fluid to revive him, along with many other drugs, including atavan. They sent in pediatric intensive care specialitists. The first guy just couldn't figure out what was going on. I said, "Has anyone checked his sugar?" They did and it was EIGHTEEN. His fever was 103. So then they worked on these issues. Ds then went into a coma and stayed in one for 2 days. His kidneys shut down and we thought we were going to have to transfer him to Chicago to have an on-site nephrologist. But a new doctor came in. She was WONDERFUL and we feel that she is the person God gave the power to save our son. She stayed at the hospital for the first 24 hours without leaving. She stayed in the room with us for 3-4 streaches of time. She held Ds and rocked him. She stroked his head. She truely is an incredible woman. At 30 minutes before the doctor gave him to have some urine output before being transferred, Ds produced 3 tiny drops of urine. JOY!!! He was having problems keeping the 2 IVs in and the nurses were unable to draw any blood, so he had to have a central line put it. The doctor did this herself. She also was the one to put in the IVs because no one else could get them in. This allowed more fluid to be put into his body more quickly and also they could draw blood from it. Late Saturday night Ds eyes opened. We had no idea what type of damage the seizure had caused, so I immediately said, "What is your name, sweetheart?" and he stated his name and then said my name. Those words out of that child's mouth were the sweetest I have ever heard. Everyone in the room started crying. Today, Ds can walk a few steps and has eaten a few things. He is on his way to getting better, and we hope to take him home soon because the drs want him out of the hospital, where infection risk is much greater. From my understanding, we have a long road ahead of us, but we're going to take him home and he is alive and speaking, and we couldn't be more thrilled. So what WAS THIS?! There are differences in opinions. There have been over 15 doctors consulted in this case. Some feel that it was some type of bacteria/virus. They cultured for everything and it came out negative. They also want the whole family to have genetic testing because maybe it was something not so major, but Ds's body, for some reason, possibly genetic, reacted to it differently that someone else. The other school of thought is that it was an allergic reaction. Of couse we cannot pinpoint the food that would be the culprit, even though we have tried. This possibility terrifies us because in this situation, an EPI pen wouldn't save him. We have always thought of the EPIS as our lifeline. But there was no airway problems at any time (which is very odd since Ds has such severe asthma). And there was a fever, which is not usually indicated, from my understanding, in an allergic reaction. So any insight that any can give would be VERY MUCH appreciated.

On Jan 12, 2006

No clue here. Just wanted you to know I read your story with my jaw hanging open, what a horrible experience for all of you. I hope everything continues to improve, hopefully if they cultured enough "stuff" something will come back to tell you what it was.

On Jan 12, 2006

Your poor, poor son. How absolutely horrible. I can't imagine. Big Hugs to all of you. Good for you for standing up to that idiot doctor. As we all know there are good doctors and bad doctors and in that kind of situation you have to fight.

To be honest, this sounded like an infection or even poison. Obviously, I'm not a doctor and if specialists couldn't figure it out, well, I sure don't presume to. But that's immediately what it sounded like to me. How old is your son? Did they screen him for accidental poisoning?

Allergies do not cause fever as far as I know. Convulsions sound like he was completely dehydrated (and dehydration leads to convulsions, coma, death). If he lost that much fluid so quickly that seems to me certainly to be the cause.

Fever, vomitting, stomach ache, diarrea, I'd surely say infection or poison.

Poor you. Prayers sent your son's way for a speedy and full recovery.

Barb

On Jan 12, 2006

Thanks. We could use all the prayers we can get!

I have a friend whose stepmother is a physician and she also asked about the toxins. They ran a tox screening and it came back negative. So did ecoli, salmonella, shigella (this is what they thought it was) and I don't even remember the others. All negative at the 72 hour mark.

On Jan 12, 2006

Oh my God! I'm so sorry this happened. How terrifying for all of you. Yes, you need to find an answer. For peace of mind... My ds had a febrile seizure at 15 months old. Maybe that is partially what happened here? The febrile seizure is caused by a SPIKE in the temp. (not how high it goes). Basically, the brain can't process the spike fast enough and causes a seizure. Scary as **** but rarely causes any harm. How old is your son? Supposedly febrile seizures are outgrown by age 5. Take care and speedy recovery to your son!

On Jan 12, 2006

Ds turned 4 three weeks ago.

On Jan 12, 2006

Mistey,

Seems that they screened for bacteria infections how about viruses. There are some very nasty viruses running around these days. My GP calls them the "Mystery" Viruses. I think the correct term is Nonspecific viral infection. Basically, they don't know what it is, just that it's a virus. From what my GP told me a CBC will give an indicator of whether it's a viral or bac infection. Loosely, a high white BC would indicate bac infection, high red BC viral.

My 3 year old had a viral infection last year that was unreal. I was very worried. 106 for 7 days. It responded to Calpol (Tylenol equivalent?) but each time the Calpol dose started wearing off it shot back up to 106. Didn't eat anything for a week. Drank like a fish. Complete lethargy. No vomitting though. I didn't admit him as at that time of year I'd be worried about what he would have caught in the hospital. GP came out and checked on him after hours. Gave me a list of symptoms to bring him to hospital if they developed.

I guess my point is sometimes viruses can be more harmful than anything and they never really know what they are.

Hugs.

On Jan 12, 2006

O.K., I'm crying for you! I'm so sorry this happened and all I can offer is my support and my prayers. I hope things get better soon

On Jan 12, 2006

OMG Mistey, how awful for your family [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img] Hugs to all of you, I can't imagine going through that.

If Sampson is as accessible as his nutritionist (she's answered a few questions for me after I met her at a seminar even though we're not a patient), just send him this email, and I'd bet they'd fit you in.

Any chance it could have been a combination of a reaction and a virus? And both were so severe because they happened at the same time and his immune system went haywire?

I'm so glad he's talking and walking. I'm sure trying to figure out what happened so it doesn't happen again seems really daunting, especially after the time you've all had. Sending my prayers and hugs too. Please keep us posted. Meg

On Jan 12, 2006

I have no idea what it could be, but wanted to add my sympathy for your ordeal and prayers for answers and a speedy and complete recovery. I cannot believe how terrifying your experience was! How awful. I hope you can figure it out so you can know what caused this. becca

On Jan 12, 2006

No advice, but did they do stool cultures?

On Jan 12, 2006

mistey, wow, I am so sorry. How horrible. I have no advice for you, but I hope they can figure it out. You have just got to be a complete wreck. Take care and keep us posted.

On Jan 12, 2006

How horrible! It really does sound like Salmonella or shigella or what about meningitis? Did they do a spinal tap? Also, is he current on immunizations? If not, then it could be a whole bunch of other things. It doesn`t sound like a reaction to me. So glad to hear he is doing better.

On Jan 12, 2006

I'm no expert but the first thing that came to my mind was Diabetes.

On Jan 12, 2006

From what I've read, it does sound like shigellosis. I also ran across this:

"Diagnosis is made by culturing stool specimens.

Shigella usually do not survive very long outside the human body, thus lab specimens should be processed rapidly."

Is it possible that the test results were not accurate due to delayed handling of the sample?

Cathy

On Jan 12, 2006

You people are simply awesome. I post something and less than an hour later there is 14 replies. I really can't thank you all enough. I'm scared to death and just wanting help. So thank you.

There were stool, urine and blood cultures run the night in the ER. All negative at 72 hours.

A spinal tap was NOT done. They might as well have done one, he was in a coma for 2 days and was poked more times than imaginable before a central line was put in.

He has been screened for Diabetes last year. Those tests came back negative.

On Jan 12, 2006

Also, the people who think it was a reaction are the pediatric intensivists (both of them) and now our allergist through Chilren's Memorial Hospital is saying that it might be a reaction as well.

On Jan 12, 2006

Misty, First of all, I'm glad your son is better. Secondly,I'm sure this was not an allergic reaction. As a parent of a PA allergic child and also a gastrenterologist(although I only see adults) I can assure you this was some type of infectious illness. It would fit very well with enterotoxigenic E. Coli. A possible reason the cultures were not indiciative of this is because we all have harmless strains of E. Coli in our bodies but unless the lab specifically was directed to look for this particular strain, it could have been read out as normal stool flora (bacteria). The fact that the kidneys were affected goes along with E. Coli infection in this age group. It is not at all uncommon in daycares. The seizure most likely was a result of his high fever and blood sugar of 18, neither of which are typical of allergic reactions. I'm glad he made a full recovery. I'm sorry you all had to enudure that.

On Jan 12, 2006

oops, can't even spell my own specialty...gastroenterologist.

On Jan 12, 2006

Perezrap, can`t the seizure cause the sugar to drop? The sugar was 18 after the seizure, right?

On Jan 12, 2006

Oh my gosh! That is so horrible and scary. I'm glad your son has been getting better and your experience sounds like a nightmare.

The only thing I can mention is my daughter had rotavirus when she was two. That was just about the scariest diarrhea episode I've ever seen, which is like pints and quarts of water coming out. My daughter ate red jello and later on I thought she had an enormous amount of some type of rectal bleeding/blood in her stool, something like that. Severe dehydration was a worry. She had to see the pediatrician, and I remember the daycare providers saying ..."We've never seen anything like it." (And they've seen tons of kids in that center through the years.) That was in reference to the type of diarrhea she had.

On Jan 12, 2006

I don't know what the sugar was before the insident, but the sugar was 18 AFTER the seizure.

Ds did have Rotavirus when he was 1 or 2. At the time I thought it was terrible. But I had no idea.

One of the most troubling things about this is that I have been told (even though it is debatable) that an Epi Pen will not HELP my child if this is going to be his reaction "type" if you will. I have CLUNG to the fact that if we Epi quickly enough, it could save his life. Now I have been told that the Epi could have KILLED him because his heart rate went over 200 (but blood pressure became unbelievably low). They said that if it raised his heart rate he could have easily passed away from the Epi.

The anxiety that we are feeling is unreal. My dh and I are terrified. And no one has any answers for us almost a week later [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img]

On Jan 12, 2006

Oh my! I too read this with jaw hanging open. I am SO glad to know he is doing better. My DD just finished with a nasty bout of the flu...TERRIBLE DIARHHEA, 105 fevers and from what I learned from the doctors, it IS possible to have bloody diarhhea from a very nasty infection...although my dd had NOTHING like what your poor son had. I, too wouldn't rest well even after his recovery. That is just so very unusual. I hope you and your family can get some answers. Many many hugs.

jill

------------------ Jill DD, 5, TNA DS, 18 mo. EA, MA

On Jan 12, 2006

Quote:

Originally posted by mistey: [b]And no one has any answers for us almost a week later [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img] [/b]

I'm betting it's because the reason your son had seizures and then into a coma could be a hospital error with the force of fluids.

On Jan 12, 2006

I'm not sure what you mean by force of fluids?

They were giving him fluids and then took the IV out to send us home (yes, I have kept the discharge papers). He had the seizure while not on ANY fluids. They then had to start an IV while he was in full blown sizure, which was not an easy task on a dehydrated toddler.

I also must add that the ER dr also had us give ds apple juice while in the ER to get his fluids back up. Needless to say, this only made the vomiting worse. He blamed dh for giving it to him too quickly.

On Jan 12, 2006

Quote:

Originally posted by mistey: [b]I'm not sure what you mean by force of fluids?

They were giving him fluids and then took the IV out to send us home (yes, I have kept the discharge papers). He had the seizure while not on ANY fluids. They then had to start an IV while he was in full blown sizure, which was not an easy task on a dehydrated toddler.

I also must add that the ER dr also had us give ds apple juice while in the ER to get his fluids back up. Needless to say, this only made the vomiting worse. He blamed dh for giving it to him too quickly.[/b]

You said the seizure happened after giving him the IV of fluids.

Wouldn't he have been hydrated from receiving the IV fluids?

Another question, why would they have been sending him home if he was, in fact, dehydrated?

On Jan 12, 2006

Forcing fluids = rehydrating via IV

On Jan 12, 2006

The doctor not testing your son's stool cultures after he expelled [b]"pure liquid- bright red. It was coming every 3-4 minutes at some point and an adult diaper couldn't even hold it. They were giving me blankets to put under him. I would estimate that he lost around 2 gallons of fluids (yes, 2 GALLONS)"[/b] would have sent up red flags for me as it did you.

I think the reason you haven't heard back from them is because the hospital/doctor screwed up.

On Jan 12, 2006

mistey, where do you live?

On Jan 12, 2006

I'm in total agreement with you, e-mom. The doctor screwed up. Totally. That's why I kept the discharge papers. I have been told by another doctor that if we took him home like the dr recommended, my precious little boy would no longer be with us.

The fluids. He lost SO MUCH fluid. I don't think that they gave enough before taking out the IV. And then they did NOT reinsert the IV after the blood was detected in the stool. The IV wasn't reinserted until after he went into the seizure.

After the intensivist came (she was in Hoffman Estates at the time) she had them put in two IVs with as much fluid as possible. Then the central line was put in. This leads me to believe that he was not adequately hydrated in the ER. But I'm no doctor.

The Epi thing is killing me, though. I have always lived under the rule it's better to give than not to give. Now I've been told that in certain circumstances it could kill him. I am so confused and miserable and just want my baby to get better.

On Jan 12, 2006

Southwest suburbs of Chicago.

On Jan 12, 2006

Don't beat yourself up over the Epi use.

There are many circumstances where using an Epi when it shouldn't be given will kill someone. It should [b]never[/b] be thought of as a quick life saving treatment for all circumstances.

On Jan 12, 2006

I don't have any insight into your DS' situation, but I wanted to type a response. I literally was crying reading your post. What a horrible ordeal---and that is an understatement. I can't imagine how frightening that hospital stay was. I also cannot believe you got such grossly negligent care. That's preposterous that you had to keep thinking of things and asking them to check them. Thank goodness you are such an intelligent, well-informed person who was willing to speak up and wasn't intimidated by the "experts." When things settle down a bit, please consider filing complaints against that horrible doctor. He should not be practicing emergency medicine, in my opinion.

I hope that they figure out what caused your DS' "episode," for lack of a better term. Hopefully it was something that will never pose an issue again, and hopefully he makes a full recovery. Many of the symptoms can be signs of an allergic reaction (as well as other things), but like you said, allergic reactions don't cause fever. My guess would be that it was something else, but I'm not a medical professional. My best wishes go out to you and your whole family!

------------------ Mookie---Mom to Devin (PA, born 2004) and Brendan (PA, TNA, SA; born 1999)

On Jan 13, 2006

Hi, I don't really have any advice at all, but just wanted to say that my thoughts and best wishes are with you, and wishing your son a speedy recovery

Take care Rach

On Jan 13, 2006

Oh, Mistey, I am so sorry for all that you and ds have been through! What a nightmare! I, like the others, am just stunned by it all. I really don't have any insight regarding the cause, but it does sound like the ER dr. really messed up, which of course would lead them to try to cover that up. What an example you are to us all of standing up for your child. I'm so glad that you were finally sent a wonderful caring dr. - to actually hold your child, what a gift that is! I also am so glad to hear that ds is improving.

It can be so hard to continue to be strong but know that you and ds are being lifted up in prayer - for complete recovery, for strength, for insight for you and drs.

Please keep us updated on his progress.

------------------ Jamie - mom to: Morgan (dd-13) - NKA Ethan (10) - asthma, enviromental allergies Carson (5) - PA/TNA/EA/Soy - enviromental allergies, slight asthma?

On Jan 13, 2006

Mistey,

I have absolutely no insight whatsoever, but just wanted to send you and your family a big hug}}} after an absolutely unspeakable ordeal. I'm just sort of speechless right now.

Please keep us posted and let us know how your little guy is doing.

Amy

On Jan 13, 2006

No advice either, but you any your little boy will be in my prayers. I cried (in my office) reading your post. No child or family should have to go through that. Hang in there and I am glad he is feeling better.

On Jan 13, 2006

Mistey,

If the ER doctor messed up, do you think it would be beneficial to get an opinion of another doctor outside the hospital as to what happened? It sounds like someone who would specialize in infectious diseases and an allergist (is that why you mentioned Dr. Sampson?)

I would be going absolutely crazy waiting a week and still not having any answers, my heart really goes out to you!

You mentioned the discharge papers...they don't usually say much right? What about the hospital records? Could you request a copy of those with all the test results etc?

Still thinking of you all today and hoping you have answers soon. Meg

On Jan 13, 2006

Mistey,My heart goes out to you and your family during trying time. My first thought when I read your post was the Red dye in the jello.,other then that I really have no clue.

(((hugs)))sending a angel your way. [img]http://www.TimeshareWeb.net/public/angel_9.gif[/img]

------------------ Love this site Synthia

On Jan 13, 2006

I am so sorry. I was shaking reading what happened. How is your son today?

I just wanted to send your son, you, and your family my best wishes and prayers.

On Jan 13, 2006

I have no advice to you either but I think you should continue to seek out other opinions and don't stop until you're satisfied...call in whatever "big guns" you can find and I agree get a COMPLETE copy of the hospital records asap. Please know we're thinking of you and your son and please update us when you can. Melissa

On Jan 13, 2006

Wow. This brought tears to my eyes. How frightening for you and your family. I too will pray for your son's full recovery.

You should pat yourself on the back for following your maternal instincts. You saved his life. What a lesson for all of us to learn.

On Jan 13, 2006

I am sure you are busy with your little one, but I am thinking of you and hope you have good news to share today. Prayers. Becca

On Jan 13, 2006

Good lord, Mistey! What an awful experience. Were I you, I would pay close attention to what Perezrap posted and try to take heart. This really doesn't sound like an allergic reaction, and the epi WILL help him if he does have one.

Also, I feel pretty certain that someone must have ripped that ER doctor a new one over the way he treated your son. A lot of people at that hospital know that he screwed up. He must have been called in by his superiors and told to explain himself. I'm guessing he's a resident, and still has a lot to learn.

Hopefully he and some of the other medical folks involved will learn something from this. I have no doubt your little guy was the main topic of discussion during Grand Rounds.

Hugs to you and your family. I hope your child is on his feet and playing again soon.

On Jan 13, 2006

Misty, I am sorry I didn't respond after reading your post last night. I was too overwhelmed to even know what to say. Of course, I am so sorry about what you went through, and hope he doing well. The first thing I thought of while reading it, before I got all the way through, was Norwalk virus. I know that a few years ago, a healthy teenage boy in the Phoenix area went to bed feeling fine. He came down with Norwalk virus during the night, and in the morning his parents found him dead in the bathroom. That virus is that bad. I hope they find out what happened, to put your mind at rest if for no other reason. Someone posted about getting an outside doctor to look into what happened. I agree. It is your right to get a copy of your child's medical records. Ask for ALL of them, every scrap of paper. Get two copies (I'm not sure whether they are required to make you multiple copies, but you can make your own copies of whatever they give you). Keep one set for yourself. THen give one copy to a good doctor that you feel you can trust. Depending on what is in that information, the doctor may or may not determine what caused the problem to begin with, but he/she will be able to pinpoint what the ER doctor did wrong, and what could have been done better. I am not usually one to think of suing, and think frivolous lawsuits are the scourge of our society. But I believe that this kind of thing is the reason malpractice law exists. You could also look into contacting the state board of medical examiners. They have the power to pull a doctor's license if they deem him too imcompetent, but as importantly, they keep track of this type of this kind of thing and could spot a pattern.

On Jan 13, 2006

This is his dad.

He is doing very well. Once he got home he seemed to perk up a bit and started walking more. I think he was getting depressed listening to all the people talking about him. At one point he looked up at me and said,

On Jan 13, 2006

I want so much to thank all of you for your positive thoughts and prayers. We truely could use all that we can get!

Thank you for the statements about all that I did to help my son, but the praise for that doesn't belong to me. I'm an intelligent person, but I am not trained in the medical field. God himself was the only one who saved my ds that night. I give Him all the credit.

Anyway- my ds. He is at hime right now and is doing much better. He is watching Spiderman right now [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] .

We pray that the worst is behind us now and that something like this NEVER happens again. Of course in order to be able to stop it from occurring again it would definately help to know WHAT IN THE WORLD IT WAS!!

The anxiety is a little better today (and it's daytime, which always helps!). I have to say, though, that everytime he coughs or says something hurts I get this knot in my stomach and break out in a cold sweat. Hopefully someday soon that will diminish.

As far as aftercare, we really don't have any. What should we do any differently that we weren't already doing? We don't know. How to prevent it again? We don't know. Was it a reaction? We don't know.

Still the issue with the Epi is one of the more difficult aspects for me. I will now question it's usage where I never did before. And we all know what happens when we question it's usage when it is needed. It's a very difficult situation.

On Jan 13, 2006

Mistey,

Glad to hear your darling son is home and doing better. He was in my prayers and thoughts last night and today.

I'm wondering if you asked any of the doctors if the dehydration caused the seizures and coma as it is my understanding that dehydration is extremely dangerous and can easily cause seizures and coma and if untreated death. If he lost that much fluid I would say he was severely dehydrated and removing the IV was a very very dangerous thing to do to the poor child.

I hope you get answers. I understand your worry about the Epi. Personally, if it had been my son, I wouldn't have administered Epi given these symptoms, if there was no breathing impairment or circulatory collapse I would have just assumed it was a very bad bug and gotten him to hospital just as you did.

Unfortunately a lot of hospitals leave things in the hands of interns and residents and the consultants are "on call". It is a ridiculous situation and very frightening in a life or death situation with your precious child.

I hope he continues to recover and has no lasting ill-effects. Have confidence in yourself. You did a great job. Your son is safe and alive.

Hugs Barb

On Jan 13, 2006

He has started throwing up again today. The doctor is admitting him again to the hospital for observation. Any ideas?

On Jan 13, 2006

You said some of the doctors suspected a bacterial infection--was your son treated with antibiotics?

You may want to read more about shigellosis. These sites seemed to have good info:

[url="http://www.rehydrate.org/dd/su44.htm"]http://www.rehydrate.org/dd/su44.htm[/url]

[url="http://www.cdc.gov/ncidod/dbmd/diseaseinfo/shigellosis_g.htm"]http://www.cdc.gov/ncidod/dbmd/diseaseinfo/shigellosis_g.htm[/url]

[url="http://www.cdc.gov/ncidod/dbmd/diseaseinfo/shigellosis_t.htm"]http://www.cdc.gov/ncidod/dbmd/diseaseinfo/shigellosis_t.htm[/url]

All the best, Cathy

------------------ Mom to 6 1/2 yr old PA/TNA daughter and 3 yr old son who is allergic to eggs.

[This message has been edited by Momcat (edited January 13, 2006).]

On Jan 13, 2006

Quote:

Originally posted by Deansdad: [b]His Allergist is also from a different hospital in Chicago (Children

On Jan 13, 2006

I found this online:

Symptoms of Shigellosis

The first symptoms are abdominal pain and watery diarrhea that start 1 to 4 days after infection. Fever is frequently present and may reach 106

On Jan 13, 2006

I am so sorry to hear your boy is still ill and has to go back to hospital. How stressful for all of you. I hope he can get fixed up quickly. Poor little guy. I will be sending good thoughts his way when I light my meditation candle tonight.

The Shigella symptoms sure do sound similar, don't they? Now I am wondering about that water park and the potential for bacterial contamination.

On Jan 13, 2006

Mistey and DeansDad, I am so sorry he is back in the hospital again. Hopefully they will figure it out before they send him home again so you won't have to worry so much.

Please let us know how he is doing. I will be thinking of him (and you).

On Jan 13, 2006

Quote:

Originally posted by Deansdad: [b]He has started throwing up again today. The doctor is admitting him again to the hospital for observation. Any ideas?[/b]

What a night mere...

Have the doctors checked with the Department of (Public) Health to see if there are any reported cases of anything in your area? Would that help provide any clues? (Some the illnesses mentioned are highly contagious and may require reporting...)

On Jan 13, 2006

Ok, MAJOR shot in the dark here but I had to share...I found something called Henoch-Schonlein purpura...look it up for the symptoms. Note that a yucky purplish rash shows up at some point in the illness but what I read says it can be 1st or last and can be a week or more after the other symptoms (which can include vomiting blood and bloody diarrhea). Good luck and I'm saying a prayer for you. Melissa

On Jan 13, 2006

Still wondering if he has had all the recommended immunizations? The two most common kinds of meningitis are prevented by the routine immunizations. Hopefully he has had them.

C difficile and pseudomembranous colitis are the same thing. Pseudomembranous colitis is the disease and C difficile is the bacteria that causes it. My dd had it when she was a baby. She acutally had it twice. It usually follows a lot of antibiotics. She had had a couple of courses of antibiotics for her ears. That wipes out the normal gut bacteria allowing for overgrowth of C difficile. The classic stool looks like "currant jelly"---blood and mucous mixed together. She had lots of pain and diarrhea. I don`t remember any vomiting, so it doesn`t sound like C difficile to me. So sorry to hear he is back in the hospital. We will be thinking of you.

On Jan 13, 2006

Oh no! I'm sorry he had to go back to the hospital. I have my whole family praying for you. Please keep us posted.

Hugs and prayers.

On Jan 13, 2006

Poor thing! I hope he gets better soon, no matter what he has.

That said, I'm with MommaBear on one of her ideas. The first thing I thought of when I read this was his appendix. I hope they did at least one thing right and checked him out for that already...those symptoms can all happen if his appendix ruptures.

On Jan 13, 2006

Misty--

I am shocked and sitting here reading this with my mouth open. I am also in the Chicago area and curious...what ER hospital was this? What waterpark were you at?

Can you or have you requested all of the records for yourself? Please consider doing this as well as working with Children's and possibly a lawyer. The treatment of lack of is unacceptable and outside of this board and your account here, document everything. Names of the nurses, comments that they said, timing, everything.

I am happy to here that he is doing better (and you) and we are here for you. Your family are in my thoughts and prayers.

On Jan 13, 2006

Quote:

Originally posted by Deansdad: [b]He has started throwing up again today. The doctor is admitting him again to the hospital for observation. Any ideas?[/b]

Keep in contact constantly with Children's and your allergist. Have him transfered there if for one millisecond you do not think that you are getting the care you deserve.

On Jan 13, 2006

Have they checked his cortisol levels? A minor illness can turn into a major crisis (with many of the symptoms you described) if his cortisol is too low...

So sorry to hear he's back in the hospital - hopefully they'll keep him an figure this all out!

With prayers, Rebekah

On Jan 13, 2006

My instinct would be E. coli. I know it can often cause kidney failure.

Thank God you trusted your gut and your ds is doing better.

On Jan 13, 2006

Our prayers are with you. Andrea

On Jan 14, 2006

Quote:

Originally posted by Carefulmom: [b]C difficile and pseudomembranous colitis are the same thing. Pseudomembranous colitis is the disease and C difficile is the bacteria that causes it. [/b]

In my field, c difficile is probably the most common cause of it, but I understand there are other causes, although less common. [url="http://www.emedicine.com/med/topic2743.htm"]http://www.emedicine.com/med/topic2743.htm[/url]

per the link:

[i]"Rare cases have been related to Staphylococcus aureus, Salmonella species, Clostridium perfringens, Yersinia species, Shigella species, Campylobacter species, cytomegalovirus, Entamoeba histolytica, and Listeria species." [/i]

General Disclaimer: I am not offering advice in any manner or form. I do not guarantee the accuracy, currentness or content of the link in this post.

On Jan 14, 2006

Mistey - your son and your whole family are in my prayers.

On Jan 14, 2006

Has a physician discussed a CT of the abdomen? It's not meant as advice, I'm only wondering.

On Jan 14, 2006

Wow, I am so so sorry. I will continue to keep you in my thoughts. Bless you heart.

2 thoughts.... I am in agreement that the ER Dr. messed up and badly. Can't believe that he would even consider letting him go when he had lost that much red fluid so rapidly. My friend who is severely allergic to wool gets a high fever and i have read threads where a fever can accompany an allergy but i DON'T think thise was an allergic reaction. Anyway, good luck and post about how you are doing.

On Jan 14, 2006

My prayers are with you.

On Jan 14, 2006

Thank you all so much. Once again I am overwhelmed by your support. Ds came back home tonight. Once again he just perks right back up as soon as he is feeling better. But when it's bad, it *bad*.

Dh and I looked up the information all you gave us. The doctors are still very puzzled. They only did one stool sample (I asked this after a post earlier). Today they did another one.

Here's some answers/comments to the questions some of you posted:

Shigellosis- to me this still sounds TOTALLY possible

Cryptosporidium- also VERY possible. My dh has a master's degree in hydrogeology and actually mentioned this. It is resistant to chlorine because it has a hard outter shell.

Colitis- doctor said this was not it

Appendicitis-yes, they checked for this. No go.

Public health department was not contacted. Our dr said that because he is not showing any strain of any type of illness they could not contact them with any info about ds. We asked about any type of illness that they might have info about, and she said that if there was an outbreak of something we would have heard it on the news.

Purpura- very interesting question, Melissa. I had the very type of purpura when I was 7 or 8 years old that you mentioned. I did bring this up to the doctors, and no one really made anything of it. But my sister, who is a PICU nurse and teaches at a University called today to remind me of the fact that I had this. Very strange timing. But he has had no rash at all.

Immunizations are all up to date. He even had the 21 pnemonia shot because he didn't develop immunity from the 3 strain shot. He was re-titered for it and shows now that he developed immunity with the 21 shot.

Cortisol has been mentioned, but I'm not sure in what capacity.

No one has mentioned a CT of the abdomen. He had an Xray of it looking for intusussuption (sp?). Everything looked ok.

So for now we are taking it one day at a time. Thanks again for the thoughts & prayers. They are needed and appreciated.

On Jan 14, 2006

I'm so glad he's home again Mistey [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img] I've checked this thread a bunch of times today hoping you'd give us good news. Let's hope he turned a corner and won't have any more episodes! Meg

On Jan 14, 2006

Thanks so much for taking the time to give us an update Mistey. I sure hope this is it, and he has an uneventful recovery from this point on. You all must be exhausted.

On Jan 14, 2006

I'm so glad he's doing better and home again. It sounds like you are getting good quality care now. You will continue to be in my thoughts. I've been turning on the computer a lot more than I normally do in order to check what's happening. Hopefully soon you will have an answer what's going on, and in the meantime, may your dear DS continue to do well.

------------------ Mookie---Mom to Devin (PA, born 2004) and Brendan (PA, TNA, SA; born 1999)

On Jan 14, 2006

Thanks so much for the update; glad he's home and doing better. Continued prayers for all of you - you have been through so much.

On Jan 14, 2006

Glad to see the update. I hope things continue to get better--quickly. Still keeping you in my thoughts and prayers. Good luck.

On Jan 14, 2006

I am thinking of you and your DS. I must have missed, how old is he?

I was in tears reading what happened. I wish I had some ideas but I can't add anything.

Please keep us updated. We are praying for your DS and a quick and full recovery! HUGS

On Jan 14, 2006

(((((HUGS))))) to your family.

I hope you didn't have to take him back to the same hospital.

On Jan 15, 2006

Thank you for giving us the update. You've been in our prayers, and I know I've come to the computer to check the board several times this weekend just to see if he's home from the hospital--and to see if there's an answer.

All the best in finding one!

On Jan 15, 2006

Just finished reading all the posts. Mistey and Deansdad my heart goes out to you. It is one thing knowing what is going on and dealing with it but it is another not knowing anything. I pray they soon have an answer for you.

My family has been praying for your son. So sad. Sounds like he is a brave little guy though.....

Pam

On Jan 15, 2006

Thank you all so much. We continually pray that the worst is over now and we never have to go through anything like this ever again with him.

He has always been such a strong little boy. This time has really affected him emotionally, though. But this is my area of expertise, so hopefully I can pull him out of it. It just breaks your heart to see them in pain, whether it be physically or emotionally.

So now we're taking it day by day. Almost 24 hours since we've been in the hospital. Deep breath in, deep breath out.

But once again, I thank you all for being so supportive.

On Jan 15, 2006

I think the unnerving thing is not knowing what caused it. You are getting differing opinions about whether it was an allergic reaction or something else. If it was an allergic reaction, you would want to know what to avoid....whereas if it was something else then there is nothing you need to do or not do.

Here is a thought....what about stool culturing everyone in your house? Then if one of you has shigella or salmonella then that would make it likely that is what your ds has. What do you think? Salmonella and shigella can be present in stool without symptoms. Maybe if your ds has it by now he has passed it to someone else in the family and they are carrying it.

On Jan 15, 2006

Misty, I have been reading along for the past few days and was shocked when I read that he was in the hospital again. I am glad he is home now. I hope you get some answers soon. My thoughts and prayers are for you guys.

On Jan 15, 2006

Mistey, I wanted to offer my hugs and prayers. I am glad that your child is home now! HUGE HUGS!!

[This message has been edited by mom2nickie (edited January 19, 2006).]

On Jan 15, 2006

Mistey & DeansDad, That was so scary. I'm so glad to hear your DS is home and doing well. Poor little guy, he's been through so much. My prayers for you all that he continues to get stronger with no repeated episodes and that you find an answer to all of this. God Bless.

On Jan 15, 2006

Mistey, I am wondering about why the hospital did not want to report this to the Health Dept. What if it happened, say, to other kids that went to this Water Park and no one reported it? I think you may at least want to call the water park and ask:

- What were the chlorine levels that day, in the pools your DS was in? (they have records of this and are required to share this info) - Has anyone else reported getting sick after visiting the Water Park?

Over time there has been a few cases where a strong bacteria was in the pool (I remember one case in a public pool in Atlanta a few years ago) and has killed several children and/or sickened many kids.

On Jan 15, 2006

Rectal bleeding was the 1st symptom my daughter had of her peanut allergy...but nothing as severe as what your son has gone through... my thoughts and prayers are with your son and your family.

On Jan 16, 2006

Mistey and Deansdad, I just arrived back home after an overnight trip. I was thinking of you while I was gone. How is your son doing today? I'm sure you're very busy taking care of him, but let us know when you have a chance.

On Jan 17, 2006

Mistey or Deansdad, how are things? becca

On Jan 17, 2006

Just curious on how everyone is. Keep thinking of your ordeal...Hang in there..

Pam

On Jan 17, 2006

Just a thought as I am running through scenarios in my head. Did the Er or hosp docs ever do an abdominal ultra-sound or an MRI to rule out anything other than acute illness? Sometimes trauma can present itself in very mysterous ways.Not trying to scare anyone just curious. My thoughts are with you and your family and I hope that everything turns out well.

On Jan 18, 2006

Mistey and DeansDad,

Hoping all is well with your son. Many prayers are coming your way!

Daisy

On Jan 19, 2006

We're still taking it one day at a time. He complained of a stomach ache today and ice ran through my veins. We still have no answers. Don't think we will ever have them. But I do really want to rule out an ana. reaction as the cause. For a MILLION reasons. Am I crazy for thinking that I should email Dr. Sampson? Anyone have the email address?

Also, I feel some pressure to return to work. I am TERRIFIED by this idea. The doctor will NOT release him to go to a daycare setting (nor would I be comfortable with this right now anyway). I'm trying to find someone I TRUST to come into my home at least one or two days a week. But really the thought terrifies me. But we just moved into a new home and I can't quit right now. But I'll take this type of worry over ds being sick anyday!!

I just pray that the worst is behind us now.

On Jan 19, 2006

I hope that your son is feeling better. If it were an anaphylatic reaction he could still be having stomach pains from the reaction. His stomach may have become angry from the reaction. When my dd had a bad reaction it took weeks before her stomach calmed down. I hope he is doing better and that he will be able to get back to normal. I would take him to an allergist and have them take a look at him.

Sending hugs.

On Jan 19, 2006

Hi Mistey,

I'm sorry the stress is still so high. Trying to deal with returning to your job when your child is sick must be terribly difficult.

And I'm sorry that the doctors still have no answers for you. How frustrating.

I pray you have some peace of mind soon.

On Jan 19, 2006

I see nothing wrong with sending an email to Dr. Sampson. I know I'd try anything and everything if I had the same situation occur with our dd. I did a search online. Is this the Dr. Sampson that everyone talks about? Hope so. Here is the info I found:

Hugh A. Sampson, M.D. Professor, Pediatrics / Allergy And Immunology Professor, Center For Immunobiology

E-mail: [email]hugh.sampson@mssm.edu[/email] Tel: (212) 241-5548 Mailing Address One Gustave L. Levy Place, Box 1192, New York, NY 10029 Dr. Sampson is a Professor of Pediatrics and Biomedical Sciences at the Mount Sinai School of Medicine. He is Chief of the Division of Allergy & Immunology in the Department of Pediatrics, Director of the Jaffe Food Allergy Institute, and Director of the General Clinical Research Center at the Mount Sinai Medical Center. Dr. Sampson's research interests have focused on food allergic disorders, including work on the immuno-pathogenic role of food hypersensitivity in atopic dermatitis, the pathogenesis of food-induced anaphylaxis, characterization of food-induced gastrointestinal hypersensitivities, characterization of food allergens, and immunotherapeutic strategies (recombinant engineered protein, plasmid DNA, peptide, etc.) for treating food allergies. His research has been funded by a number of grants from the National Institutes of Health (R01 AI 24439, R01 AI 43668 and P01 AI 44236) and private foundations (Clarissa Sosin Foundation and Food Allergy Initiative). Dr. Sampson supervises two clinics/week in pediatric allergy.

I wish you the best of luck and I hope your son has a speedy recovery. Please keep us posted.

On Jan 19, 2006

Here is the link:

[url="http://directory.mssm.edu/faculty/facultyInfo.php?id=29101&deptid=29"]http://directory.mssm.edu/faculty/facultyInfo.php?id=29101&deptid=29[/url]

On Jan 19, 2006

Mistey,

Sooo glad to hear all is well...have been checking the boards daily since your last email. It's so scary when our kids are sick. HUGS and PRAYERS are coming your way.

Please try to contact the nice Doc you saw during the hosp. stay. See if she could recommend yogurt or a "bene-bacteria" that would help your sons tummy. (I have allergic gastroenteritis, and have problems for at least a week following a tummy reaction...much cramping, stomachaches etc...much like antibiotic-induced diarrhea. The bacterial supplements, or even yogurt, helps get things right in just a couple of days. But since your son has been ill, please contact the Doc regarding this; wouldn't want to add to the problems.)

Hope you have a well weekend! Daisy

On Jan 20, 2006

Quote:

Originally posted by mistey: [b] She said that Ds had woken up from nap coughing, and now he was saying his stomach hurt. I rushed to the daycare to find Ds lying on the floor screaming that his stomach hurt and that he needed a treatment. I asked if he was having trouble breathing or if his lungs hurt, and he said no. I attempted to give him a treatment and the nebulizer was broken. He was crying so hard, that I just called 9-11. The ambulance came and said that his pulse-ox was fine and he didn't need a treatment. I told them to give him one anyway, which they did. When they were done they said that he could go home because he was fine. When he tried to stand up, he fell over and started vomiting. I asked for him to be taken to the hospital. In the ER his vomit had a red tinge to it. I asked about it, and they asked what Ds had eaten and he said, "Jello". I asked if it could be blood, and they kept insisting it was Jello. Then the diareah started. I can't even describe to you the HORRIFIC amount of it that came out, and it was pure liquid- bright red. It was coming every 3-4 minutes at some point and an adult diaper couldn't even hold it. They were giving me blankets to put under him. I would estimate that he lost around 2 gallons of fluids (yes, 2 GALLONS). .[/b]

Hello Mistey, I'm sorry I didn't see your message to me on my 'GI Symptom' post. I've been gone for three weeks.

First, I hope your son is feeling better. It must have been terrifying to go through this.

Your son's initial symptoms sound like mine. Mine starts with terrible stomach cramping....not just 'cramping' but pain that I would rate an 9 on a scale of 1-10. Then the nausea hits and I start vomiting, followed by diarrhea that is unlike what you get when you have the stomach flu. It's as if someone has turned on a garden hose.... lots of fluid loss in a short period of time. When I had a major reaction a year ago, I realized it was serious just by the amount of fluid I was losing in just minutes. It was really scary. Rapid fluid loss causes a major drop in BP resulting in hypovolemic shock. It is as much a medical emergency as a respiratory reaction.

Years ago I was hospitalized for 3-days with gastroenteritis that the doctors suspected was caused by an allergic reaction as I was also covered in hives. At that time, I tested positive for blood in the stools.

But I certainly haven't had the problems that your son did after his initial GI bout. Is it possible your son had a GI reaction that caused major hypovolemia that then caused all the other problems?

I hope you can figure this out. It does sound like someone dropped the ball in your son's treatment. Keep us posted. Adele

On Jan 20, 2006

I just recalled that you moved into a new house. Beside him having an allergic reaction could there be something in the new house that he could be reacting to?

I hope all is well and that you all have a great weekend together.

Hugs

On Jan 20, 2006

Hello,

He is still doing better and better everyday. He must have been traumatized by it as well because he will not sleep in his own room and every moment he is awake, he spends tried to one of our sides.

He is supposed to go back to our allergist in Chicago as soon as he is well enough. I think it is very possible that this was a GI reaction. The nurse in the PICU gave us the medical manual to look over after the two intensavists said it must have been a GI reaction. The medical information was spot on, I think. With the allergist now on the fence (after hearing our story), I really suspect this. Your symptoms (Adele) sound exactly like what we had happen. The amount of bloody stool in a short time period was unbelievable! It just kept getting worse until he had the seizure. I really think that all subsequent problems were caused by massive lack of fluid (hypovolemic shock?). Basically he just shut down after the seizure and his kidneys had also shut down. So the stool stopped at that point.

The house we have lived in for over 6 months already. And before moving in it was cleaned from top to bottom by my wife. Since then we have even cleaned all the carpets twice. Also, he had not been at home for probably 8 hrs when this started at daycare.

Funny you should mention them dropping the ball with his care. We have the medical records now and they are several things other than correct. Many Serious omissions and even flat out lies. They even have in the record that I wanted to take him home and had pulled the car around. What they leave out is us both questioning the bloody stool and vomiting many times. The doctor saying

On Jan 20, 2006

Quote:

Originally posted by mistey: Now I have been told that the Epi could have KILLED him because his heart rate went over 200 (but blood pressure became unbelievably low). They said that if it raised his heart rate he could have easily passed away from the Epi.

I've been thinking about this. I thought that tachycardia (fast heart beat) was caused by low blood pressure and that epinephrine would help in this case because it constricts the blood vessels and thus raises the blood pressure. Anaphylactic shock occurs when rapid fluid loss causes a catastrophic drop in blood pressure. I would definitely talk to the allergist about this. The epipen may still be the thing you want to use.

Looking at this chart (from Dr. Sampson) I would have thought that epi was indicated in your son's case. (Of course, I'm not a doctor, I could be wrong!)

[url="http://pediatrics.aappublications.org/cgi/content-nw/full/111/6/S2/1601/T2"]http://pediatrics.aappublications.org/cgi/content-nw/full/111/6/S2/1601/T2[/url]

Cathy

[This message has been edited by Momcat (edited January 20, 2006).]

On Jan 20, 2006

Mistey and Deansdad, I am so glad to hear that your little one is getting better.

I am also angry and sad for you that now you are getting CYA from the hospital w/r to records.

I wish you luck. When faced with this ourselves, we ended up getting records changed by screaming obscenities on the phone to several hospital administrators... [img]http://uumor.pair.com/nutalle2/peanutallergy/redface.gif[/img] Obviously, you all know that this was clearly not the first approach I tried, but I wanted it clear that my daughter's experience was class IV anaphylaxis... NOT something "less serious." The nurses were covering themselves since they hadn't even evaluated her when we showed up... so they recorded us as an "urgent care" visit instead of a 9-1-1 call. I would never have known if our insurance company hadn't questioned it. I suspect your case may be more serious since physicians were involved in the official "record." All I can tell you is that you should not back down and that you may have to become a PITA to multiple people, but DO NOT allow medical errors to stand in a chart. No way-- even if it takes radically, uncharacteristically obnoxious behavior on your part. Maybe pointing out to them that errors of that nature could have a serious impact on future critical care. That helped us.

I am with you. Wholeheartedly. I hope that you can track down the source of the problem so that none of you ever has to go through this again. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] Your poor guardian angel must be wanting a vacation after all the recent overtime, huh?

On Jan 20, 2006

Mistey: Um, why are his fingernails so blue. My father recently died of lung cancer and they often came in and looked at his nails and pressed on his fingers. How come when I press on his fingers they stay white?

Nurse: (seemed concerned): Yes, let me talk to the doctor about this.

They never came back in and did anything. The IV was STILL not re-inserted even when I questioned about the CYANOSIS.

I questioned REPEATEDLY about the Epi. I told every parimedic, nurse and doctor that he was ana to peanuts and I had four epis with me. Everyone told me (even after they attempted to send us home) that this was just gastroenteritis and that the Epi was not needed. Personally, I kept thinking about the girl who thought that she was having an asthma attack and didn't use her Epi. I kept thinking that I had always been told that it wouldn't hurt.

Then when the doctor said that it could have KILLED him, I was devistated. If I had followed my gut, I would have killed my only child. It was terrible. Then when a doctor said that it could have been a reaction, I said (ver batim): "Heads are going to roll if I find out that I should have used that Epi on my son. I continuously asked to use it and was told not to. I was even told that I could have KILLED my son if I had given it". Interestingly enough, no one has mentioned the Epi issue with me at all since.

I actually haven't even been coming to the board. My husband told me there were some posts, and I totally didn't want to leave anyone hanging. You all are the only people who will give me any straight answers. It is so frustrating and now I'm still jsut scared to death. I'm scared for us to leave the house. It's absolutely insane.

Adele, could you please tell me more about your reaction? Did doctors tell you to use an Epi with the gastro reaction? How did you live through such reactions? Do you have asthma? Do you gets respiratory symptoms as well? Ds has severe asthma, but really didn't have much of an issue- it was almost all gastro.

I have so many questions. But our allergist doesn't want us to come to Children's Memorial Hospital until he is farther out of the woods because they don't want him exposed to more germs. It is such a long road. And today he ate Betty Crocker fruit snacks and had 2 hives and his stomach hurt again. I gave Benedryl and he was o.k. I called Betty Crocker and they said that they would label if it were made on the same lines with peanuts, so I have NO IDEA what happened with that one.

I just want to cry [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img]

On Jan 20, 2006

Mistey, I know you're trying to get in touch w/ Dr. Sampson. Should you be unable to and would like to pursue a 2nd opinion w/ another well known allergist, I can give you the number for Dr. Wesley Burks' assistant. Dr. Burks is at Duke and you can google him to see how much research he does and how well respected he is. I can't promise anything, but he may be willing to look at the records and speak w/ you re: whether or not this is a reaction. Melissa Feel free to contact me off board if you wish (email is in my profile)

On Jan 20, 2006

This just hit me as I read through this entire thread. . .

Jello? Betty Crocker Fruit Snacks? Possibly both have same or similar dyes or other ingredient or something totally NEW that child is now allergic to???!

I can only imagine what you are going through. And maybe I can't really even do that.

Perhaps consider keeping a detailed food diary right now?

And, if you haven't already, sit down and write out your version of the entire event in ER & hospital. Do it now while all is fresh. -- Print out copies of what you've posted here too as they may be helpful down the road. Slowing down enough to write out (by hand with pen & paper, if you can stand it) may help you find a clue, or some sort of clarity. Have DH do his own version.

You all must be exhausted through all this.

Thinking of you, as we all seem to be -- Elizabeth

On Jan 20, 2006

Quote:

Originally posted by melissa: [b]Mistey, I know you're trying to get in touch w/ Dr. Sampson. Should you be unable to and would like to pursue a 2nd opinion w/ another well known allergist, I can give you the number for Dr. Wesley Burks' assistant. Dr. Burks is at Duke and you can google him to see how much research he does and how well respected he is. I can't promise anything, but he may be willing to look at the records and speak w/ you re: whether or not this is a reaction. Melissa Feel free to contact me off board if you wish (email is in my profile)[/b]

Similarly, I've just scheduled an appointment with Dr. Robert Wood, who also is one of the country's leading allergists. He's head of John Hopkins' allergy department. I can give you his contact info. if you want it.

------------------ Mookie---Mom to Devin (PA, born 2004) and Brendan (PA, TNA, SA; born 1999)

On Jan 20, 2006

Mistey,

Reading your last post, one thought came to mind: exactly when were you told using the epi would kill him? How far into your ordeal were you and what were his symptoms/vitals at that point?

Going out on a limb here, not being a doctor, but I guess I could potentially see how if the hospital let the reaction continue long enough (blaming it on jello no less [img]http://uumor.pair.com/nutalle2/peanutallergy/mad.gif[/img] ), that perhaps the epi could do harm if his heart was already trying to compensate for what was going on and was beating so fast.

But...if the hospital had dx it as a reaction when you guys came in the door, and gave the epi then??? Then what???? Would it still have potentially killed him?

And, I can see how you guys are already at this point...but I would not believe too much of what anyone in this hospital told you. The cover up of mistakes may have begun much earlier than you realized. Hopefully I'm making sense here.

I'm sorry, I don't have any other way of getting in touch with Dr. Sampson other than the public phone/email info that Lori Anne posted. Just in case you missed it in my first post to you, his nutritionist was totally willing to take a few calls from me, and we're not a patient. I met her at a seminar and had a few follow up questions, she was incredibly helpful and accessible.

If I were you, I'd send an email with all the details and make a follow up phone call explaining to look for the email and what happened.

If you guys could get some kind of answers, it might help ease some of your anxiety right? Try getting another allergist's opinion.

HUGS}}}}}}}}}}} again. Meg

Edited to add: I'm only asking these questions because it seems what you were told about the epi potentially killing him has really upset you (as it would me), and I think (?) the timing of that information could be important. If I were in a hospital and I was told not to give the epi, I'm sure I would have listened also. Just to be clear, I wasn't questioning your actions, only the hospital's again.

[This message has been edited by mommyofmatt (edited January 20, 2006).]

[This message has been edited by mommyofmatt (edited January 20, 2006).]

[This message has been edited by mommyofmatt (edited January 20, 2006).]

On Jan 20, 2006

I believe I would sit down with those medical records and respond to each one of the inconsistencies/lies in the records and then insist that they be added to his official records... at the very least. Good luck

------------------ Lalow James 4 yrs, NKA Ben 3 yrs, PA and MA and SA

On Jan 20, 2006

Mistey and husband, We are all thinking of you and your little boy. I check this board every day to see how he is doing!

I agree with writing down your version of the events, and I'd get it NOTARIZED so it's official.

The food diary is a good idea, too.

I know it must be so stressful to deal with the CYA bs from the hospital when you are so worried about your DS.

HUGS!!!!!

Please let us know if we can help in any way.

On Jan 20, 2006

Mistey, I am so sorry for what you are going through. I can imagine the fear you are feeling right now. Honestly, I think I would copy and paste the posts you have here describing everything that happened and mail it to Dr. Burks, Dr. Sampson and Dr. Woods. You have nothing to lose. Any help you can get right now would be more than you have.

I think it is disgusting that the hospital has decided to document their version of what happened. I agree, write down your version. You may want to get a lawyer's advice about this.

Hang in there. I can tell from your posts that you are a wreck and just mentally exhausted from the stress of this. I wish there was something I could do to help you.

On Jan 20, 2006

So sorry. I can't imagine your stress.I agree...document, document, document.

On Jan 20, 2006

Quote:

Originally posted by mistey: [b] Adele, could you please tell me more about your reaction? Did doctors tell you to use an Epi with the gastro reaction? How did you live through such reactions? Do you have asthma? Do you gets respiratory symptoms as well? Ds has severe asthma, but really didn't have much of an issue- it was almost all gastro. [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img][/b]

Hi Mistey, My heart goes out to you. It is so confusing.

Yes, I have asthma....but it's mild. I don't wheeze...I just cough. I was diagnosed with PA after having a big reaction (all GI) after eating peanuts....but I had no respiratory problems. This all happened at home. I didn't know I had PA. The vomiting/diarrhea lasted for a few hours. Within 6 hours I was tired/shaky but was ok. I went to an allergist and he confirmed PA with a skin prick test.

Having only GI reactions makes it difficult to decide when/if you should give EPI. My allergist said to play it by ear. If I have another reaction like the one I had a year ago, I wouldn't hesitate to use EPI. I know how sick I felt and how scared I was.

I've had other smaller reactions since but it seems that the bad one hit hard, immediately. The smaller ones felt milder from the beginning. For these, I took Benedryl.

Trust your instincts. If you feel your son is really sick, you have to do whatever you need to do so that he receives treatment. But I think it is really important that you find the best allergist in the business so that you KNOW you're getting accurate information. We are all just second-guessing. Good luck - and keep us posted. Adele

On Jan 20, 2006

For what it's worth, my pa son also had a hive reaction to Betty Crocker fruit snacks. I also called and they insisted they were safe, so who knows.

I do know that some people can have very severe reactions to dyes. You may want to do a search on it.

On Jan 20, 2006

[url="http://www.pslgroup.com/dg/42e7a.htm"]http://www.pslgroup.com/dg/42e7a.htm[/url]

[url="http://www.allergynursing.com/questions3/food_dye.html"]http://www.allergynursing.com/questions3/food_dye.html[/url]

On Jan 20, 2006

Mistey,

Didn't your son also have a reaction to marshmallows? Any connection b/w jello, marshmallows and fruit snacks?? I don't have all of them in my house right now to check...Meg

On Jan 20, 2006

Quote:

Originally posted by mommyofmatt: [b]Mistey,

Didn't your son also have a reaction to marshmallows? Any connection b/w jello, marshmallows and fruit snacks?? I don't have all of them in my house right now to check...Meg[/b]

Is gelatin a possible link? Many jellos contain gelatin, all marshmallows except vegetarian ones contain gelatin, and a few brands of fruit snacks contain gelatin (being vegetarian, we don't eat gelatin. That's why I know this stuff).

------------------ Mookie---Mom to Devin (PA, born 2004) and Brendan (PA, TNA, SA; born 1999)

On Jan 20, 2006

It was nice to see you on the board tonight. I am sorry for all you are going through and I hope that you will all find answers soon. Has a Dr. or any one that you trust told you what he should or shouldn't be eating aside from nuts? When my dd had her last reaction the Dr. said to only give her bland foods and let her eat only if she wanted. She barely ate for weeks but the Dr. said let her eat when she wants. She is fine now and eats well but when a reaction happens in the stomach then it takes a while to heal. I hope all is well. Continuing to pray and send hugs to all of you.

toomanynuts

On Jan 21, 2006

Mistey and Deansdad,

I hope you'll keep one thing in mind as you're reading everyone's questions and suggestions: it's much easier for us mentally to come up with ideas because we haven't lived through what you did, and we're not emotionally involved the way you are since it's not our child. And, we want to help so badly because we know it could have been our child.

I found a thread that might be worth reading concerning the emotions you're feeling after such a traumatic experience.

[url="http://uumor.pair.com/nutalle2/peanutallergy/Forum3/HTML/001015.html"]http://uumor.pair.com/nutalle2/peanutallergy/Forum3/HTML/001015.html[/url]

For myself, after my ds had a reaction, it took me a while before I could wrap my mind around the whole thing, and it wasn't anything like what you went through. You guys did an amazing job in that hospital pushing the doctors and nurses to look for things and to not take him home. I hope I could do the same thing.

You've proven how much strength you have, and you'll get through this. Meg

On Jan 21, 2006

Yes, you really did a great job. I only hope I could be as strong as you were if I'm ever put in the same situation.

I wish you only the best and I hope you get some answers soon.

I've been thinking about how it would be if I went through this and it just makes me want to help more. I wish I had some way that I could.

On Jan 21, 2006

Regarding the link between gelatin and anaphylaxis, see this website: [url="http://www.postgradmed.com/issues/2002/05_02/rusznak.htm"]http://www.postgradmed.com/issues/2002/05_02/rusznak.htm[/url]

On Jan 25, 2006

Dean is still hanging in there. He still complains of his knee, foot and hand hurting frequently, though. He also has 'just little tummy aches'. Yesterday he said, "Mom, don't worry, but I've got a LITTLE bit of a tummy ache". I do my very best to keep my anxiety away from him, but he's a VERY perceptive child.

We're still just taking things day by day. I have found a very sweet young woman to come into my home. It scares me to death, but I realize that sooner or later we are going to have to move on, even without any answers. I just pray daily that God will protect him. There's not a whole lot more we can do.

I do not think that we will ever know definately what happened. Our doctor has recommended genetic testing. I might request a GI workup as well. We will also have to go to our allergist in Chicago as well.

We don't really know what else to do.

Anyone have any suggestions on dealing with health anxiety? I worry about him everyday. I'm scared that it will happen again- especially since we don't know WHAT it was. He coughs or looks tired or says he has a tummy ache and my insides turn to Jell-o. Like I said, I try to keep it away from Dean, but really inside I'm having a tough time.

On Jan 25, 2006

I have been following along here, mortified by your experience in the hospital, and just so sorry for what your son, you and husband have been through. Really didn't know what to say -- just have been shocked. Now, though, I might have some suggestions to alleviate your anxiety with having to leave your son (at least).

Now I don't know everyone's opinion about this -- but what about a nanny cam? You could also get one of those web cams too. Video phone. Why would I suggest these? Well, you could get a visual on your son during the day when you can't be there -- but might have reason to want to see (literally) how he is doing. There are visual cues that you as a mother will pick up on, that someone else might not. If you got something like a web cam, you could call during the day, tell them to turn the thing on, and see your son. I would guess, you could even achieve the same with a couple of cell phones that have the video capability -- you could talk and see and so could your son (which I think is important too).

That might help out with some of the anxiety -- for you and your son. If you could see & talk to him throughout your day, you'd have the ability to monitor him (and this new caretaker) more closely. Your son might also find it comforting to have a way to see you too.

On Jan 25, 2006

Good idea. My dh and I have discussed this. I tell you, it's difficult to even go to the grocery store. I suppose it comes with time.

BTW- does anyone happen to know how long cryptosporidium can be detected in stool? Just curious. I searched the web today and realized that an o & p test will NOT detect it. Dh and I asked about this many times, and every time was told that they had ordered an o & p. At the time we didn't realize that the test does not test for the one thing that we were requesting.

On Jan 25, 2006

Mistey, I am sorry about what your family has been through, and I am so glad to hear that your son is doing better. I have not been through the same thing, but my own son has many health issues. Let me assure you that it will get easier with time, even if you don't get over it completely. And if he has truly recovered, and this mystery illness was something accute, not chronic (which I think is probably the case), then in the future it will all be a distant memory. I know that doesn't help too much now, but it is something to look forward to.

On Jan 25, 2006

Hi Mistey, When I was so sick a year ago, prior to the ana reaction that caused me to visit an allergist when I got the PA diagnosis, I was eating peanuts slowly through the day 'for my health'. I was sick for a couple of weeks (until I ran out of peanuts) .....and thought I had either giardia or crytosporidium.

I mention this as you are also suspecting cryptosporidium for your son. Another similarity!

On Jan 25, 2006

Hey Mistey,

Thanks for the update. Glad he seems to be doing better. I know you're not sure whether this was a reaction or not, but would a call to Lisa Cipriano Collins be helpful? In case you don't know, she wrote the book Caring for Your Child with Severe Food Allergies, and she is offering phone consultations. I haven't tried her but kept the flyer in case. Phone: 866/270-4945 or [url="http://www.foodallergymatters.com"]www.foodallergymatters.com[/url]

Also, I have no idea whether this will be helpful, but I saved an article from the WSJ about people working for call centers from home. I might look into this myself in a year or so. You can set your own hours, and according to the article, the income is $25-$40K a year. If you're interested, the author's email is [email]sue.shellenbarger@wsj.com[/email], it was a recent article (about 2 weeks ago) titled "Outsourcing Jobs to the Den".

Hope things continue to get better! Meg

On Jan 25, 2006

Mistey,,

Glad to hear you DS is better. Hang in there! You sound like you are still in shock; this will get better.

I take an antidepressant. I was clinically depressed following a bad hospital stay a few years ago. I resisted at first, but decided to give it a few weeks. Then, I returned to my old self. (The anxiety is not good for you or DS or DH.) The SSRI's do not medicate you (as does Valium or Xanax, which are great in a pinch --lol!). But when you are under a lot of stress, your serotonin gets used up.

If you'd like to hear more, please feel free to email me (see my profile).

Meds are not for everyone, but can come in handy during times of stress.

JMHO, Daisy

On Jan 26, 2006

Hi Mistey and family...So glad to hear your little one is doing better..Our hearts and prayers go out to you all..It must have been so awful for all of you..I can't even begin to know how you go on everyday with the worry you have..It must be so difficult not knowing..Just remember you have to stay healthy too for your sweet baby..Please take good care of your self and I hope your husband is taking good care of himself..Hope to hear more good news...

On Feb 1, 2006

I learned through my child's recent bloodwork that the total IgE indicates if the system is in "attack mode" to an allergen. Was Dean's total IgE ever measured at the hospital? If not, did the hospital keep the blood? They still might be able to add the test. This might be a way to answer if Dean had an allergic reaction--- or I could be totally off about the relevance of total IgE for his situation. I'm not a medical professional.

------------------ Mookie---Mom to Devin (PA, born 2004) and Brendan (PA, TNA, SA; born 1999)

On Feb 1, 2006

I was thinking about you and your son today. Do you have any updates? Were you able to contact Dr. Sampson?

Has anyone determined what the cause actually was?

Hope things are getting better for all of you.

On Feb 5, 2006

How are you , your son? Please let us know how you are doing...

------------------ Jill DD, 5, TNA DS, 18 mo. EA, MA

On Feb 6, 2006

Thanks for the concern. Ds is doing o.k., I guess. Since the hospital and then the re-hospitalization he has had one episode of vomiting and now has somthing that we think is a cold/ flu.

Emotionally, we are all still pretty devistated. We have an appointment to see a genetisist (sp?) on April 19th. Ds is still not able to go to school or really leave the house and is starting to go completely stir-crazy. Some days we feel like prisioners in our own home. My friends' children are going to The Incredible on Ice, taking tumbling lessons, etc. Mine watches movies and plays with his toys inside the house.

Don't get me wrong. Our son is ALIVE and we have nothing to complain about. Just sometimes I get on my pity-pot because I just want him to live a "normal" life. We just take it day by day. I still think not knowing anything (what was it, how do we prevent it from happening again, etc.) and having orders that we have to keep him isolated until *who knows when* is difficult. Or is this how our life is going to be forever? We just don't know. No one has any answers for us.

On Feb 6, 2006

I am sorry that you are still going through so much with out any answers. I wonder why they are asking you to isolate him if they don't know what is wrong? I hope you find out soon. Take Care

toomanynuts

On Feb 6, 2006

Thank you for your update...I'd been wondering about you guys...hoping things are a bit better. I ,too wonder why they want him isolated? Are you able to at least go outside with him for fresh air? Sometimes that does wonders for a mood.

Have you ever just sat down and asked your DS (or for others reading this post..your son or daughter) "Is there anything on your mind? Anything you'd like to talk about? Anything you're wondering about?" Once in awhile I will do this with my daughter..not in the heat of a moment where she is obviously upset, but in a moment where she is her usual self. It is interesting to hear her responses...sometimes she starts discussing some odd thing on her mind, sometimes she just says, no...and then I see her smiling and I know she is just pleased I've cared to ask. Maybe your DS could get something off his chest...release a little if he's feeling frustrated as you are. I know it must be difficult to talk about. And it must be so frustrating not knowing whats caused this. Sending you many (((((hugs))))) and praying your world regains some 'normalcy'.....

On Feb 7, 2006

On the very few days in which it isn't freezing (we are in the Chicago area) we do go out a bit. He has severe asthma, and the cold definately aggravates it. But when the weather breaks above 45 or so, we do go outside to watch the geese [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] .

The only reasoning that we have been given for keeping him inside is because the doctors do not know what caused this *thing* so we can't really keep him away from what we don't know. They are concerned as to why whatever this was hit HIM so hard. We are seeing an geneticist, but the first available appointment is April 19th [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img] . The doctors are concerned that there might be "something else" as to why this happened, and why he has been so sick for his entire life.

Lilpig- I do often talk with him. He just turned 4, but I ask about what he is thinking about. I'm a child therapist, so this is my area [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] . The interesting thing is, though, that he is very perceptive. He says things that he knows that I *want* to hear. He has said that he wants to go back to school to see his friends, and we have discussed this. We talk about how lucky it is that his school comes to HIM, instead of him having to go to school. We talked about it's benefits. But I also did not dismiss the fact that he misses his friends. We have had two of his schoolmates to the house, even though it's probably against the rules. But as his parents, we have to look at him as a WHOLE child, not just the illness. Doctors are there to treat his physical issues, but we can't dismiss the rest of him in the process.

On Feb 7, 2006

Hang in there mistey.

------------------ Love this site Synthia

On Feb 7, 2006

Wow, mistey, you're a child therapist! Your DS is very fortunate to have a mommy like you...you must have wonderful insight. And you're so right, you do have to look at the whole child. I'll be praying that time goes quickly and hopefully 'uneventfully' for you until April 19th. As synthia said...hang in there ...and hugs too.

On Feb 13, 2006

Our peditrician said that April just would not do. He recommended a different children's hospital and we have an appointment for Feb 24th. MUCH better [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] .

[This message has been edited by mistey (edited February 14, 2006).]

[This message has been edited by mistey (edited February 14, 2006).]

On Feb 13, 2006

mistey and deansdad,

I just read through this whole thread. I am so sorry that you and your precious little boy have been going through all this. I will add your family to my prayers.

My first thought was an allergic reaction to DYES. At least two other people mentioned the same thing, but you haven't responded to that possibility. Have you looked into that?

On Feb 14, 2006

No, he hasn't been tested for dyes. Since he is allergic to so many things, most of his food is all natural. But he does eat Fruity Pebbles, which I would *think* have red dye. But I'm not sure. He's eaten the same brand of jello (Kool Aide brand) many times in the past with no issue, though.

I will mention it to the allergist the next time I see her.

On Feb 14, 2006

Thanks for explaining your experience on the dyes subject.

We went through a mystery of sorts ourselves with our son's learning disability. I considered everything we could rule out just as helpful as the things we finally nailed down as the problems. If your son has eaten the exact foods that are now seeming to cause the problems, then there probably isn't any link - unless he's just developed an allergy to them.

Hang in there. Prayers, Lam [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

[This message has been edited by Lam (edited February 14, 2006).]

On Feb 23, 2006

Got to thinking about your son today. Any new info? How has he been?

On Feb 23, 2006

Thanks for asking. You have incredible timing. We actually go to see a geneticist tomorrow.

We are of course concerned with this "episode", but also of some other things as well. He complains all the time of his left knee, left leg and left hand hurting. I supposed it could be growing pains, but it is always on the left side. He also gets a lot of little red bruises that turn purple after a couple of days on his legs and on the top of his arms. My dh thinks I'm paranoid after the "episode" and that they're nothing. I hope he's right. He's also got severe asthma, but that's under pretty good control right now, but with a really high dose of Flovent (220 mcg twice daily).

All prayers will definately be appreciated!!

On Feb 23, 2006

Glad to hear you have a doctor's appt Mistey. I've been following along, wondering how he's doing.

Prayers coming your way! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] Meg

On Feb 23, 2006

I've been following along too. Of course, your whole family is in my prayers too. Best of luck! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

On Feb 23, 2006

Prayers to all of you...Take care, mandi

On Feb 23, 2006

Been thinking of you guys, too. Prayers for sure...good luck tomorrow and I'll pray for the doctors wisdom.

------------------ Jill DD, 5, TNA DS, 18 mo. EA, MA

[This message has been edited by lilpig99 (edited February 23, 2006).]

On Feb 23, 2006

My local paper had an article today on vaccinating for the Rotavirus, and it sounds almost EXACTLY like what your child had. He sounds like just the right age to get it, and it can be so bad that children can die from it. The links are to the symptoms and a more graphic description of it, and the website also has a ton more info on the virus.

[url="http://www.rotavirusinfo.com/rotavirus_symptoms.html"]http://www.rotavirusinfo.com/rotavirus_symptoms.html[/url]

[url="http://www.rotavirusinfo.com/treatment_for_rotavirus.html"]http://www.rotavirusinfo.com/treatment_for_rotavirus.html[/url]

ETA: Just re-read the thread, and I saw he already has had Rotavirus...is it possible it could be a different strain? Because the more I read the website, the more it sounds like what happened to you. When I was young and got the chicken pox, the doctor said that since it was such a weak case of it that I could get it again. I didn't, but maybe something like that happened? Did they test for the rotavirus?

And I forgot to add, I hope all goes well at the genetist.

[This message has been edited by starlight (edited February 24, 2006).]

On Feb 26, 2006

Another wasted day. Every time I asked a question, the geneticist said that this question was not in her "field" and I would need to ask someone else with that "speciality". To be honest, she did not seem very knowledgable about things in general. In fact, at one point in time she told me that a RAST test was not a "very good way to detect food allergies". I knew right then and there we were not in the right place. She had blood drawn, and said that she would test for a couple of things, but highly recommended us to see a doctor who specialized in connective tissue disease. Thanks. Great. Now let's wait another month or two so we can go somewhere else. She gave me a name of a specialist she knew. Um, no thanks. I guess the only real thing that we agreed upon was the fact that we need to see another doctor.

Dean has already had rotovirus. He contracted it while in the hospital for pnemonia. They did test for it and it came back negative.

On Feb 26, 2006

How disappointing that the dr.'s visit was so unhelpful. Will you try to see another geneticist who hopefully is better? Obviously this dr. didn't understand things outside of a geneticist's domain, like the value of a RAST test. How did the dr. seem about a geneticist's "turf"?

On Feb 26, 2006

mistey,

Sorry you had a wasted trip. We've had our share of those, but our problems weren't anywhere near as urgent as I would think yours are.

Did your doctor suggest the geneticist?

On Feb 27, 2006

Yes, our peditrician suggested that we go to a geneticist.

Now I guess we need to see another doctor. *sigh*

On Feb 27, 2006

Sorry to hear she was no help..We were hoping you would get some answers.. Can't the doctors understand how sick your child was..And still is.Makes you want to scream doesn't it..Hope you find some answers soon..

On Feb 27, 2006

How is your son doing now? Is it possible it *was* viral or bacterial and missed? Maybe it isn't anything more than that(meaning it hopefully is now gone), but there is some issue here of the initial ER visit and some questionable handling, so maybe there are alot of referrals going on the cover all the bases and be sure not to miss anything. Trying to be hopeful it was an illness that is now gone, long gone....

Thinking of you, becca

On Feb 27, 2006

Mistey,

Has your son been tested for LCHAD (Long- Chain Hydroxyacyl-CoA Dehydrogenase Deficiency) or MCAD (Medium Chain Acyl-CoA Dehydrogenase Deficiency)? I was talking with another mother while waiting for our daughters at dance class and she was telling me that all three of her children have this disease. Their bodies cannot process glucose and if it builds up to a certain level they get violently ill. Her oldest daughter was the one they discovered it on and she nearly died at age 2 b/c her sugar level got so low. She was so sick that they took a Make a Wish trip with her. Now that they know what it is they are able to manage what the children eat so everyone is healthy. I looked up the name of what she was telling me about and I'm pretty sure I typed the right things above. I will see this mother tomorrow at dance so I will find out for sure. She said that no doctors could help them until they went to the Mayo clinic. What her children have is a rare disease and left untreated is very serious. Just thought I'd check to see if either of these diseases might be a possibilty for your son. My prayers are with you! God Bless!

On Feb 28, 2006

Interesting. Yes, he was tested for MCAD by the geneticist last Friday- it takes 2 weeks for the results. I don't know if he was tested for the LCHAD or not.

I don't know a thing about either disease. I guess I will look them up, though. I swear, I should have an honorary Dr degree for this!!!

On Mar 2, 2006

Quote:

Originally posted by mistey: [b]Interesting. Yes, he was tested for MCAD by the geneticist last Friday- it takes 2 weeks for the results. I don't know if he was tested for the LCHAD or not.

I don't know a thing about either disease. I guess I will look them up, though. I swear, I should have an honorary Dr degree for this!!![/b]

I kind of shuddered when I read about the LCAD and MCAD. To go along with that thought...there is also SCAD--very rare (short chain acyl-coA dehydrogenase deficiency). My goddaughter had this from birth...and quite severly, and in conjunction with a few suspected other rare diseases. She was unable to do ANYTHING on her own..eat, talk, walk etc. A symptom of SCAD is found in the URINE!...elevated levels of ethylmalonic acid (NOT methylmalonic acid as many dr's would think). It is extremely rare and there is a sort of 'threshold' effect...if a certain and unknown majority of an individual's cellular mitochondria are not affected by this mutation(s)--that is if the person has enough 'good' mitochondria, they'll be OK, if the individuals mitochondria are mostly 'bad' (affected greatly by the mutation(s) ), the individual expresses symptoms of the disease at really varying levels from person to person. At the time my goddaughter was being tested for things, there in fact were no really great testing parameters for SCAD, other than the ethylmalonic acid in the urine...I do know this--if one has ethylmalonic acid in the urine...'something ain't right'.

Praying for answers for you guys...

------------------ Jill DD, 5, TNA DS, 18 mo. EA, MA

On Mar 7, 2006

Thanks for the info Lilpig. Of course I haven't heard of that either! Could you tell me more? Was there an "event" or "episode" that cause symptoms? Was she able to perform the above life skills before the "episode" and then not after? What promted testing for this disorder? How old was she when she was diagnosed?

On Mar 9, 2006

Hi there,

To answer your questions...

My goddaughter had severe hypontonia from birth...extremely low muscle tone. All of the life skills I mentioned she was never ever able to do. Her mitochondria were so heavily affected, even her brain was essentially malformed. Hence, the months of genetic testing after her birth until finding out the liklihood of SCAD being the culprit. So no, there was no episode in her case...no point where she was ok and then was not.

Here is a link to the page in NORD that has general info about it.

[url="http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Short%20Chain%20Acyl%20CoA%20Dehydrogenase%20Deficiency%20%28SCAD%29"]http://www.rarediseases.org/search/rdbde...cy%20%28SCAD%29[/url]

I realize your son defintely had some sort of event/episode here but, when I get a moment, maybe tonight, I will research a little further...I know i've read something once about it 'presenting' itself at a later time..not at birth. I'll keep looking for that. Can I ask how his muscle tone was/is? Tiring alot? From reading that article from NORD, I notice that there may be a conclusive test for that now...thats good.

I'll post when I find more info!

Take care mistey...

On Mar 9, 2006

Just thought of this too....

Maple Syrup Urine Disease. My son was tested for this after having several bouts of his diaper smelling heavily of maple syrup...unbelievably so. Easier to smell a babies wet diaper with concentrated urine then a boy of your sons age....but at any rate. In fact when my dh was holding him one morning and i walked by him, i asked dh if he had made pancakes or spilled syrup! He tested negative.

Can be from birth or episodic I believe. Interesting syptoms...

[url="http://www.nlm.nih.gov/medlineplus/ency/article/000373.htm"]http://www.nlm.nih.gov/medlineplus/ency/article/000373.htm[/url]

I am so sorry you are being forced to go down all of these horrifying roads...it is really awful to think of these things. I pray for continued strength for you ...

On Mar 9, 2006

Mistey, Sorry I have not replied sooner but I have not seen the other mother from dance class until this week. Here is the info she shared: There are several fatty acid metabolism disorders-MCAD, LCHAD, VLCAD, CPT1&2. Suggested website is [url="http://www.fodsupport.org"]www.fodsupport.org[/url] She suggested that you contact some of teh families on the website if you have questions. She also said that of her three children, one tested negative for the disorders, but because her enzymes levels were so off they knew something was not right. All three of her kids have this disorder.

Best Wishes! Please keep us posted!

On Mar 13, 2006

Hi Mistey - was thinking of you and your DS today, and came here to catch up. Sorry about the disappointing appt with the geneticist.

Someone mentioned Mayo clinic. Could you go to a place like that for a full workup? My mom had immune system issues and she went there (Minneapolis I think) and saw a bunch of specialists and it was valuable. In her case they didn't uncover anything -- but they did rule out many things. In other cases I think the specialists there are the only ones that figure out a rare disease.

Best of luck, and keep us posted. We are all thinking of you often!! ((hugs))

On Mar 14, 2006

I'll admit I haven't read every post in this thread but I have to ask - your son HAS been tested for type 1 diabetes right?

I totally don't understand how he could go as low as 18 (which is VERY low) unless he is having some problem with his blood sugar levels. Generally the numbers would be very high with undiagnosed diabetes.

I ask because my 4 yr old son was dx'd with type 1 diabetes when he was 26 months old. And the peanut allergy showed up a month after that (ugh!). He also has issues with asthma and eczema.

Type 1 or other blood glucose orders are ruled out?

Carol G.

On Mar 15, 2006

We have considered Mayo. We are going to pretty good hospitals in Chicago (no more little ones for us). We might consider it over the summer.

He was tested for diabetes. Negative. But it's my understanding that a metabolic disorder often *looks* like diabetes. He was tested for MCAD and one that begins with an 'L'. These both came out negative. But I guess there are hundreds of types of metabolic disorders. That's why the geneticist wants to discuss his case with a metabolic geneticist.

On Mar 16, 2006

Quote:

Originally posted by mistey: [b]We have considered Mayo. We are going to pretty good hospitals in Chicago (no more little ones for us). We might consider it over the summer.

He was tested for diabetes. Negative. But it's my understanding that a metabolic disorder often *looks* like diabetes. He was tested for MCAD and one that begins with an 'L'. These both came out negative. But I guess there are hundreds of types of metabolic disorders. That's why the geneticist wants to discuss his case with a metabolic geneticist.[/b]

My sisters family and me and my Dh visited the Genetics Dept at the University of Chicago hospitals. Darrel Waggoner , MD and Julie Hederick were who we spoke to. Their phone number is (773) 834-0555. and address is Dept of Human Genetics , 5841 S. Maryland Avenue Room L041, MC 2050 , Chicago, IL 60637. I believe he is quite into Metabolic diseases. And all I can say is how unbelievable nice these two were. So informative and knowledgable. My sisters family dealt with SO many doctors and really had wonderful things to say about them. Not sure if you're at U of C , but my goddaughters doctor was really top notch, Dr. Huttenlocker (sp?). Hopefully the phone/address hasnt changed ...its been 4 years since we had seen them in regards to discussing the odds of me and my DH having a child with SCAD and learning about the disease. Really a wonderful hospital.

STill thinking of you...

On Mar 16, 2006

Misty,

After I just posted, I re-read the follow letter that the genticists sent us after we met with them. If you do not understand mitochondrial inheritence...it is REALLY different than autosomal inheritance.... here is what they wrote:

"As a review, the the mitochondria and the genetic material of the mitochondria are all inherited from the mother. There are multiple copies of mitochondria in every cell and each mitochondria is different from the other. It is possible for an individual to have some small proportion of mitochondria, which carry genetic mutations making those mitochondria ineffective in energy production, but that person has no signs or symptoms of illness, as there are multiple copies of normal miochondria within the cell. In the case of the mother, when the cells divide to make multiple eggs for fertilization, there is a random distribution of mitochondria to each individual egg. This results in the possibility that some cells might inherit many copies of mitochondria with genetic mutations while other cells may inherit only some mitochondria with genetic mutations and others may not inherit any. The child's symptoms would be related to the percentage of mitochondrial cells, with express the genetic mutation. There is no good recurrence risk information for this data and the risk of having another child for ______'s (my goddaughters name here) parents would be anywhere from 1-100%. We discussed the possibility that _____'s mother may have inherited mitochondrial DNA with mutations from her mother which would raise the possibility that those same mutations could have been passed on to you (me). There would then be a risk that you could pass those mutations on to your children. Unfortunately, we are unable to give any type of statistical number to estimate the chance of such an event occurring. "

My grandmother had 8 miscarriages and 1 stillborn child, my sister 1 miscarriage. They were quite interested in this information and said 'it is consistent with a possible mitochondrial inheritence.' Have you seen any of this sort of activity within your family tree?

[This message has been edited by lilpig99 (edited March 16, 2006).]

On Mar 16, 2006

I am the only live child my mother could have. She had 4 miscarriages.

I have one live child as well. I have had 2 miscarriages.

Interesting.

On Mar 16, 2006

mistey - I had never heard that about metabolic disorders mimicing diabetes. I figured if it was diabetes they certainly would have diagnosed it by now.

Best of luck to you and your family - I wish I knew something that would help but I can tell you are getting some great advice and recommendations here.

Carol

On Mar 16, 2006

Quote:

Originally posted by mistey: [b]Thanks for asking. You have incredible timing. We actually go to see a geneticist tomorrow.

We are of course concerned with this "episode", but also of some other things as well. He complains all the time of his left knee, left leg and left hand hurting. I supposed it could be growing pains, but it is always on the left side. He also gets a lot of little red bruises that turn purple after a couple of days on his legs and on the top of his arms. My dh thinks I'm paranoid after the "episode" and that they're nothing. I hope he's right. He's also got severe asthma, but that's under pretty good control right now, but with a really high dose of Flovent (220 mcg twice daily).

All prayers will definately be appreciated!! [/b]

OK, upon re-reading your mentioning the spots, your purpura, and melissa thoughts a few pages back. I, too looked into HSP. What do you think? Those red to purple spots...diarhhea, joint pains...here seem to be a lot of similarities going on here.

What do you think? This may be worth asking the doctor about.

[url="http://www.drgreene.com/21_842.html"]http://www.drgreene.com/21_842.html[/url]

[This message has been edited by lilpig99 (edited March 16, 2006).]

On Mar 16, 2006

First let me apologize Mistey. I feel so badly for making you think about all of these things, yet at the same time I completely understand the need to follow every lead and path to figuring out what is going on with your DS. So I will add another one to the mix. This too is strangely similar...

[url="http://www.emedicine.com/emerg/topic238.htm"]http://www.emedicine.com/emerg/topic238.htm[/url]

Again, I'm sorry and I hope any of these things helps with out making you crazy with anxiety. BTW , how are YOU holding up?

On Mar 17, 2006

You are absolutely not increasing my anxiety. I and so grateful for all the suggestions and help I have received here. Researching things on your own is difficult, and often you can't see the forest for the trees.

Emotionally I am doing MUCH better. The more time that he is well, the easier it is for dh and I. We're still in "limbo" but it doesn't feel as much like it anymore.

I look into all issues that everyone raises. I am learning more about the medical world everyday. I just hope that we can find out what it was and find a way to ensure that IT doesn't happen again.

On Mar 17, 2006

I have followed this thread and kept this little guy in my thoughs and prayers for sure. I am totally overwhelmed by the wealth of information and love the responders have sent out. I just feel like right now this is the best place to be if you need help of any sort.

Keep it up folks.

Peggy

On Mar 20, 2006

Quote:

Originally posted by lilpig99: [b] OK, upon re-reading your mentioning the spots, your purpura, and melissa thoughts a few pages back. I, too looked into HSP. What do you think? Those red to purple spots...diarhhea, joint pains...here seem to be a lot of similarities going on here.

What do you think? This may be worth asking the doctor about.

[url="http://www.drgreene.com/21_842.html"]http://www.drgreene.com/21_842.html[/url]

[This message has been edited by lilpig99 (edited March 16, 2006).][/b]

I keep going back to this...what do you feel?

[url="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=9713395&query_hl=6&itool=pubmed_docsum"]http://www.ncbi.nlm.nih.gov/entrez/query...l=pubmed_docsum[/url]

On Mar 20, 2006

Thanks Peg- I feel the same way. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

I spoke extensivly with our peditrician about the HSP. At aafp.org, it states that the disease has a rash in 100% of the cases. He did not have a rash of any kind. I totally agree that it sounds much like what happened, but because there was no rash our dr dismissed this as the cause. (Although it would be nice if it was this- usually there is no after effects of this!!)

On Mar 20, 2006

Quote:

Originally posted by mistey: [b]Thanks Peg- I feel the same way. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

I spoke extensivly with our peditrician about the HSP. At aafp.org, it states that the disease has a rash in 100% of the cases. He did not have a rash of any kind. I totally agree that it sounds much like what happened, but because there was no rash our dr dismissed this as the cause. (Although it would be nice if it was this- usually there is no after effects of this!!)

[/b]

I also found studies off of medline that states their subjects had the purpura in 100% of the cases. Yet the study was over the course of many many years, and many of the subjects did not present with the bruising/rash at first, but all of them eventually got it. Many had difficulty getting the inital diagnosis because of just that. You can always talk with your pediatrician again about this. I almost would say that I would if it were me...but I am NO doctor...so thats not advice [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]

Those spots/rash could still come even six months later according to these findings:

[url="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=10405241&query_hl=10&itool=pubmed_docsum"]http://www.ncbi.nlm.nih.gov/entrez/query...l=pubmed_docsum[/url]

" TARGET=_blank>http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=10630435&query_hl=10&itool=pubmed_docsum[/URL]

Take care Mistey...hugs.

[url="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16304891&query_hl=7&itool=pubmed_docsum"]http://www.ncbi.nlm.nih.gov/entrez/query...l=pubmed_docsum[/url]

[This message has been edited by lilpig99 (edited March 20, 2006).]

On Mar 21, 2006

Thank you lilpig. I didn't know that it could present without a rash. How do you know so much [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] ? I'm sure glad you do, though!

So I read that this can occur again. That TERRIFIES me. Any ideas on how to prevent it from occurring again? Do many children die of this? It didn't seem like it, but my ds was VERY close to death with it. I hope that it never comes back again!

On Mar 21, 2006

Just wanted to give you more (((hugs))) mistey. Hang in there.

------------------ Love this site Synthia

On Mar 22, 2006

Thanks, Synthia.

On Mar 22, 2006

Henoch-Schonlein Purpura (HSP) or Anaphylactoid Purpura Medical Author: William C. Shiel Jr., MD, FACP, FACR What is HSP? What causes HSP? What are symptoms of HSP? What is the treatment for HSP? What are the consequences of HSP? What is HSP?

Henoch-Schonlein purpura (HSP or anaphylactoid purpura) is a form of blood vessel inflammation or vasculitis. There are many different conditions that feature vasculitis. Each of the forms of vasculitis tends to involve certain characteristic blood vessels. HSP affects the small arterial vessels called capillaries in the skin and frequently the kidneys. HSP results in skin rash (most prominent over the buttocks and behind the lower extremities associated with joint inflammation (arthritis) and cramping pain in the abdomen. What causes HSP?

HSP occurs most often in the spring and frequently follows an infection of the throat or breathing passages. HSP seems to represent an unusual reaction of the body's immune system that is in response to this infection (either bacteria or virus). HSP occurs most commonly in children, but persons of all age groups can be affected. What are symptoms of HSP?

Classically HSP causes skin rash, pain in the abdomen, and joint inflammation (arthritis). The joints most frequently affected with pain and swelling are the ankles and the knees. Patients with HSP can develop fever. Inflammation of the blood vessels in the kidneys can cause blood and/or protein in the urine. Serious kidney complications are infrequent, but can occur. Symptoms usually last approximately a month. Recurrences are not frequent, but do occur.

Signs and tests A physical examination reveals skin lesions and joint tenderness. A urinalysis shows microscopic blood in the urine. A skin biopsy shows vasculitis.

What is the treatment for HSP?

While HSP is generally a mild illness that resolves spontaneously, it can cause serious problems in the kidneys and bowels. The rash can be very prominent, especially on the lower extremities. The treatment of HSP is directed toward the most significant area of involvement. Joint pain can be relieved by antiinflammatory medications, such as aspirin or ibuprofen (Motrin). Some patients can require cortisone medications, such as prednisone, especially those with significant abdominal pain or kidney disease. With more severe kidney disease, cyclophosphamide (Cytoxan) has been used to suppress the immune system. Infection, if present, can require antibiotics. What are the consequences of HSP?

The prognosis for patients with HSP is generally excellent. Nearly all patients have no long-term problems. The kidney is the most serious organ involved when it is affected. Rarely, patients can have serious long-term kidney damage or an abnormal bowel folding called intussusception. A few patients have recurrences of symptoms for a couple of years after the onset of the illness. Recent data shows that HSP in adults is generally more severe than in children. Adults have more severe kidney involvement and can require more aggressive treatment. The ultimate outcome, however, is usually very good for both adults and children. Reference: Clinical Primer of Rheumatology, Lippincott Williams & Wilkens, edited by William Koopman, et. al., 2003. Kelley's Textbook of Rheumatology, W B Saunders Co, edited by Shaun Ruddy, et.al., 2000.

1: Eur J Pediatr. 2002 Apr;161(4):196-201. Related Articles, Links

Risk factors of renal involvement and significant proteinuria in Henoch-Schonlein purpura.

Sano H, Izumida M, Shimizu H, Ogawa Y.

Department of Paediatrics, Saitama Medical Centre, Saitama Medical School, Kawagoe, Japan.

Risk factors of renal involvement and significant proteinuria in patients with Henoch-Schonlein purpura (HSP) were retrospectively evaluated by univariate and multivariate analyses. The analysis was performed in 134 patients with HSP. Renal involvement was found in 65 patients (49%) and 97% of the renal involvement was found within 3 months of disease onset. Moderate or severe proteinuria was recognised in 25 patients. A univariate analysis revealed that an age of more than 4 years at the onset, severe abdominal pain with gastrointestinal bleeding, persistent purpura over a month, coagulation factor XIII activity < 80%, and treatment with factor XIII concentrate were associated with developing renal involvement. A multivariate analysis showed that severe abdominal symptoms, an age of more than 4 years, and persistent purpura increased the risk of renal involvement. Risk factors of moderate or severe proteinuria were also examined. The risk factors in a univariate analysis were severe abdominal symptoms, persistent purpura, decreased factor XIII activity, treatment with steroids, and treatment with factor XIII concentrate. Of those, persistent purpura, treatment with factor XIII concentrate, and factor XIII activity < 80% were associated with significant proteinuria in a multivariate analysis. Among the patients with severe abdominal symptoms, factor XIII activity was significantly decreased in patients with signific ant proteinuria compared to other patients without significant proteinuria.

CONCLUSION: Long-term prognosis of Henoch-Schonlein purpura is dependent on the severity of renal involvement. In those patients who have the risk factors of renal involvement, especially significant proteinuria, close attention should be paid to a urinalysis for at least 3 months from the onset of the disease.

Chang Gung Med J. 2000 Mar;23(3):135-41. Related Articles, Links

Gastrointestinal manifestation and outcome of Henoch-Schonlein purpura in children.

Chao HC, Kong MS, Lin SJ, Huang JL.

Division of Gastroenterlogy, Department of Pediatrics, Chang Gung Children Hospital, Taipei.

BACKGROUND: We reviewed the clinical and laboratory manifestations and analyzed the outcome in children with Henoch-Schonlein purpura (HSP) and gastrointestinal involvement. METHODS: The medical records of 158 children who had Henoch-Schonlein purpura with gastrointestinal (GI) involvement admitted to our institution from June 1987 to December 1998 were reviewed. We retrospectively analyzed their demographic features, clinical manifestations, and outcome. RESULTS: Totally 104 boys and 54 girls (male: female = 1.9:1) were enrolled in this study, with a mean age of diagnosis of 5.8+/-4.8 years (range: 2 to 13 years). Sixty-three (40%) of our patients had preceding upper respiratory tract infection. The main GI manifestations included abdominal pain (88%); GI bleeding (75%), and vomiting (25%). Bowel edema was found in 71% of examined patients. Upper GI endoscopy provided supportive evidence of HSP in 58% of patients examined. Five patients were found to have marked jejunal edema with bowel collapse leading to severe intestinal obstruction. Thirteen patients (8.2%) had emergent complications including massive blood loss from GI tract in 4, seizure in 2, severe hypoalbuminemia in 2, and emergent surgical condition in 6. Twenty-one patients (13%) experienced prolonged hospitalization (> or =10 days). Bilious vomiting, hematemesis, leukocytosis (>20000/cmm), high C-reactive protein (>50 mg/l), and hemorrhagic erosive duodenitis were found to correlate with prolonged hospitalization. Fourteen (20%) of 70 patients who received follow-up for more than 5 years experienced GI recurrence of HSP. CONCLUSION: Despite severe and protracted GI symptoms in some HSP patients, the overall prognosis of GI involvement in children with HSP remains good.

Mistey....you'll notice varying degrees of opinion on whether or not the future of those with HSP likely involve a relapse or not. Kidneys can be affected, I read a lot about steroids being given for renal involvement or severe abdominal pain...after all, it is an inflammatory vascular disease and a steroid would definitely reduce inflammation. I was drawn to the 'skin biopsy' mentioned in the first article above. The biopsy would show that inflammation (vasculitis).

Did you notice the alternate name for this ...'anaphylactoid purpura'...makes me shiver...

Did your son have blood in his urine upon testing? That might prove renal involvement.

I have not yet read a lot about how to 'treat' such a severe acute case (in the hospital) as your sons...steroids right then? Maybe, I don't know...I'm not in the profession. I'd like to find something useful for you on that. Will try to find more info on that one the next chance I get....big hugs. And lets keep in mind, you don't really even KNOW if he has such a thing as this...I mean who knows? It could just as easily be something else entirely. The doctors are even at a loss right now, but I like information...detective work. This is something to keep in your mind for reference should you want to explore this (the purpura issue) further....or test for it.

((((()))))

(* edited to try and separate these articles more...its not working!)

[This message has been edited by lilpig99 (edited March 22, 2006).]

[This message has been edited by lilpig99 (edited March 22, 2006).]

On Mar 22, 2006

Sorry if this has been suggested before, but I don't have time to look through the post again.

Have you looked into crohn's disease? Mayo's got some good info on it here: [url="http://www.mayoclinic.com/health/crohns-disease/DS00104/DSECTION=1"]http://www.mayoclinic.com/health/crohns-disease/DS00104/DSECTION=1[/url]

My aunt, a childhood friend, and a work friend all had this. All have landed in the hospital from it. I don't know why I didn't think of this sooner...I hope he's been feeling better lately.

On May 5, 2006

Hi Mistey,

You and your DS are on my mind....how are you doing???? I'm still thinking of you guys and hope things are going well...hope you've found some answers or help....

Hugs, Jill

On May 9, 2006

Thanks for asking! Dean has been doing much better lately. We went to geneticist, who did testing. She referred us to a *metabolic* geneticist who also did more testing. We're still waiting for the results of her tests. We also ran a panel to look for markers for any type of connective tissue disease (lupus, RA, etc.) and all came back negative.

We also have an appointment with our allergist the first week of June.

My poor little pincushion [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img] . He doesn't even cry anymore when his blood is taken. I don't know if that's good or bad.

And still no answers.

On May 9, 2006

I am glad to hear Dean is doing even a little bit better. Maybe with summer coming, the fresh air and sunshine will lift his spirits. How are you doing mistey? I know even though the 'episode' was awhile ago, living through every day since then I'm sure, has been different...I hope you're hanging in there. Keep us posted...and enjoy the cool spring Illinois weather.

On May 10, 2006

Thank you so much for your concern. I really do appreciate it.

I am feeling better day by day, especially since Dean is getting better (except for his asthma- but we KNOW asthma). I am trying to get him out in the yard as much as possible when the allergens are down. My dh and I are doing our best to get him out of the house as much as possible.

It is a very strange experience to come so close to loosing a child (especially since he will probably be the only one we will be able to have). I always loved and appreciated him, but it just doubles when you experience something like this- even though I would never have thought it possible to love or enjoy him anymore than I did. I take such joy in the little things that he does. But I must say, that the thought does creep in every once in a while- the "what if's". I have caught myself taking more pictures "just in case there isn't another Easter, another romp in a mud puddle, another opportunity to cut his own hair, etc." I do the very best to shut off those thoughts as soon as they appear, but of course they will still come anyway. Being a therapist I do recognize these as mild PTSD symptoms, but they ease with time and are not debilitating.

Sooooooo, we do the best we can. We love him and appreciate the time we have. In a way, I guess something like this is the best thing that can happen to a parent because you realize how truely blessed you are. And this turns into being a better parent. So I suppose everyone benefits. It's a hard way to learn a lesson, though! I just pray that the worst of his health issues are far behind us now.

On May 11, 2006

I can only imagine that those thoughts must creep in from time to time and I'm glad you are so 'on top' of everything...it's good to hear your disposition is sound. It's good for everyone I suspect. Hugs and keep up the great work at the best job in the whole world....being a mom! Happy Mother's Day ( a little early ) mistey....

On May 12, 2006

Mistey,

Glad to hear Dean's doing better and things have calmed down a bit. I hope the worst is behind you too. Meg

On May 16, 2006

Well, things are up in the air AGAIN. The (2nd) geneticist called on Friday and said that ds's lactic acid and plasma amino acid tests came back abnormal. They re-ran the tests on Saturday. They put a rush on the tests, and we received the lactic acid test back, and it looks o.k. this time. The fasting amino acid test still needs to come back. We don't even know what the doctor is looking at (metabolic diseases, fatty oxidation disorders, mitochondial diseases, congenital lactic acidosis, glycogen storage diseases). We just don't know. We just continue to pray that the worst of his health issues are behind us. One day at a time. It sure is difficult sometimes, though.

On May 16, 2006

I think those amino acids can really fluctuate. I suppose it's good to have numerous tests done to see if something truly is going on...and not just a false result. Don't be shy to ask for repeat tests! I know these things take time...unfortunately.

Praying....

On May 22, 2006

YEAAAAHHHH!!!! The tests came back NEGATIVE!!

Great big, HUGE sign of relief!! I thought it was terrible not knowing what caused the insident, but having a metabolic disorder was worse!

So now to the allergist on the 6th of June.

On May 22, 2006

Whew! Congratulations! Hopefully you will eventually get some answers, but to at least have some good news right now is fantastic.

On May 22, 2006

Mistey,

How has he been since that happened? Its great that the bad stuff is being ruled out. Sometimes, they never find out why something happened. My son had cyclic vomiting when he was younger (at age 3 and again at age 5). He would vomit in the middle of the night, multiple times, be really drowsy and much better in the afternoon. This would happen every 3-5 days. When he was 5 he dropped about 8 pounds, scared the heck out of me. Up until then, I never was concerned with how much my kids ate, they always were healthy and gaining weight. We tested for everything, all negative. Then it slowly stopped happening. They allergist said that we could keep trying to find out, do more involved procedures, but we may never find out the cause. He is 9 now, and knock wood, it hasn't returned, but I can sort of understand the worry, although yours was definitely more immediate. Maybe whatever it was, it is over. Take care, Naturemom

On May 22, 2006

Thanks what we pray for his as well.

This happened January 6th. Only one more doctor to see, I think!

On May 22, 2006

YIPPPPEEEEE!!! That's SO great that you have some good news to hang on to! Really, REALLY great! Enjoy it! And praying for a good allergist appt!

Jill

On Jun 7, 2006

Well, we have visited the FINAL doctor!!!! (Jump for joy!). Here are his rast results:

Wheat 5.9,5.1 now 5.0 (we're going to have a wheat challange) Dairy .52, .35 now 1.0 (yuck) Peanut 1.5, 0.66, now 0.41

So, I guess we *kind of* have our answer. It was not an ana. reaction to peanuts. The only other possibility was some type of bacteria/virus that was not tested. The only puzzle piece that does not fit is the hypoglycemia. Every doctor was concerned about the hypoglycemic episode. But no one can explain it. We went to an endocrinologist who said that he does not have diabetes.

So, God willing, this is over and we can go back to our "normal" lives again.

On Jun 7, 2006

I can just FEEL your excitement on this and I'm just sitting here smiling as I am typing...even a bit teary for you guys.

Good luck on the wheat challenge and the peanut numbers are looking good! Sorry about the dairy though.....

But, hey, the most important thing is that the anaphylaxsis was ruled out!! Even if you never completely understand what happened, it's good to be where you are now...you've come so far.

Just so, so very glad for you and your family...will say a prayer of thanksgiving for this tonight! Continue to keep us updated Mistey!

Hugs....

On Jun 8, 2006

Thank you so much! There has been so many on the board who have been so supportive through all of this. Especially you, lilpig. I really appreciate it. It was so nice to know that there is somewhere you can turn and people will be supportive and give ideas (or do research) when you are just too drained to do so. It really did help a lot.

On Jun 9, 2006

You are too kind Mistey....you guys just go have a *really* wonderful summer...it just makes my day to know you're feeling good about things!

On Jun 9, 2006

Glad to hear that it wasn't anaphylaxis!

Sounds like things are getting better. So happy for you and your ds. Best of luck with the wheat challenge. After all he's been through it would be great if he had one less allergy now!

Related