PLEASE HELP MY DS!!

Posted on: Thu, 01/12/2006 - 9:13am
mistey's picture
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Joined: 01/18/2004 - 09:00

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.

Posted on: Thu, 01/12/2006 - 9:18am
anonymous's picture
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Joined: 05/28/2009 - 16:42

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.

Posted on: Thu, 01/12/2006 - 9:28am
barb1123's picture
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Joined: 04/08/2000 - 09:00

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

Posted on: Thu, 01/12/2006 - 9:53am
mistey's picture
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Joined: 01/18/2004 - 09:00

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.

Posted on: Thu, 01/12/2006 - 10:01am
mommamia8's picture
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Joined: 11/13/2005 - 09:00

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!

Posted on: Thu, 01/12/2006 - 10:12am
mistey's picture
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Joined: 01/18/2004 - 09:00

Ds turned 4 three weeks ago.

Posted on: Thu, 01/12/2006 - 10:12am
barb1123's picture
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Joined: 04/08/2000 - 09:00

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.

Posted on: Thu, 01/12/2006 - 10:17am
Lori Anne's picture
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Joined: 07/13/2005 - 09:00

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

Posted on: Thu, 01/12/2006 - 10:19am
mommyofmatt's picture
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Joined: 03/12/2004 - 09:00

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

Posted on: Thu, 01/12/2006 - 10:29am
becca's picture
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Joined: 05/22/2001 - 09:00

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

Posted on: Thu, 01/12/2006 - 10:43am
MommaBear's picture
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Joined: 09/23/2002 - 09:00

No advice, but did they do stool cultures?

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