Just found out my 14 month old son is PA (SCARED IN IDAHO)

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Hello everyone, On Friday, 18th of May we went to see an allergist and found out my son was PA. (90% chance of a reaction) The night before his appointment, my husband gave him 2 small bites of pie that had peanut extract in it and our son immediately started coughing and a few hours later vomited. He also cried all night.(he developed a rash all over his face too) We were told by our pediatrician that he was allergic to milk and peanuts and to just try to avoid them. She didn't tell us the severity of his PA and that he could actually die from it!!! She didn't even tell us about the EpiPen!!! I feel so guilty (as do my husband) that we made our poor baby suffer all night. We didn't know he was having an anaphylactic reaction. I've been reading all your messages until 2AM since we found out. It scares me to death!! The allergist told us how serious this could be and we now have the Epipens. I know I have a few years before he starts school but, I worry about that now especially after that boy in Wash. died. I'm so glad to read all of your messages...I learn something everyday from them. I do have some questions. He is almost 15 months now and is so small (only 17 lbs). He grew at a normal rate the first six months of his life and stopped growing from 6 to 12 months. (he has bad eczema also)Do you think this could be a result of his allergies? I'm still nursing him and I worry if I eat something with peanut protein...could he have a reaction to it through my breastmilk? I'm so glad to find this website..I need all the support I can get. We are military and we have no family close by.

On May 24, 2001

Welcome to the boards!

You mentioned your child's growth - there is already a thread on this topic with a lot of responses that might help you. It is posted under Reactions/Stories.

I haven't got any children, so I can't help you very much, but when my mum breastfed, she would act as if she was allergic to nuts so that she completely avoided them. I don't know if this is necessary, but something managed to control my reactions- maybe it was that?

The only way to be safe is to be completely sure about what the situation is. I find that the more worked up about something I become, the more I put myself at risk because I am not calm enough to think about the entire situation - I just think about the present. I find that when I am relaxed and think about hat I am going to be doing, when I could be exposed to nuts and how I can prevent a reaction, things generally go very smoothly.

Take care, Rach

On May 24, 2001

Under the Main Discussion Board, there is a thread on breastfeeding/pregnancy that you may find useful.

On May 24, 2001

Peyton's Mommy,

Welcome to the subculture. Isn't it amazing how life can take directions that you never knew existed? Take heart - many of us have unwittingly caused our children to suffer on the advice of woefully ignorant pediatricians.

We did exactly the same thing to our little Katherine. We gave her a taste of a peanut cookie when she was just over 2, and later noticed a little rash around her mouth. Since there were other possible causes for the rash, we didn't think much of it. But we did ask our pediatrician. The pediatrician should have said "see an allergist - get a blood test". Instead, she said "wait until Katherine is 3 then give her a little peanut butter". Needless to say, we followed her advice and Katherine got to see the inside of an ambulance and got to taste an oxygen mask.

So, do not punish yourself for taking the advice of someone who is paid very well to be educated in areas where you are ignorant. You're doing exactly the right thing in reading everything you can on the web. You will soon be better educated than your pediatrician on this particular topic. The knowledge you gain and the understanding you pass on to those around you will serve as the best possible protection for your child.

Re your question about breast feeding. There was a recent study that hit the press that determined beyond a doubt that peanut proteins can pass unchanged from mother to child via breast milk. I don't have a handy link to the study, but I believe it was out of the University of Toronto and should be easy to find via a web search.

Remember Friday, May 18th. Your life just took a major turn. But I firmly believe that by educating yourself and then by educating (sometimes aggressively) the other people in Peyton's life, you can give him a safe, happy childhood.

On May 24, 2001

Disregard this - server problem resulted in a duplicate posting.

[This message has been edited by Wilton (edited May 24, 2001).]

On May 24, 2001

Welcome to the Scared to Death Club. Our son had his first reaction to peanuts when his sister gave him a peanutbutter sandwich (which he didn't eat just put it to his face)we thought it was due to a bar of soap he got hold of. His second reaction also came courtesy of his sister, but there was nothing else to blame. Our family doctor's advice was "Well no more peanutbutter sandwiches for him." When you consider all of the other products which contain peanuts it's a wonder we still have him. READ EVERY LABEL! And I mean read every label, ice cream, chili, coffee, bean bag chairs, shaving cream, and so on and so forth. You are not half as scared as you're going to be. Just remember you're not alone and it can be done. Being scared is a good start.

On May 25, 2001

Just wanted to add to my husband's (MattsDad) post. Yes, allergies CAN contribute to or cause growth problems. Our son was breastfed from birth until 3mo of age after he lost 7oz in a month. After switching to formula, he gained well for a week. Then he quit gaining. From then until the time we began introducing solid foods, and ended up eliminating the formula within about 3wks, he gained either VERY little, VERY slowly, or occasionally LOST weight. His percentiles slipped from over the 50% in weight and 25% in height at birth to far below the charts in height and under the 5% in weight by the time he was 5mo old. That was right around the time we discovered he was PA, incidentally.

Numerous tests and a visit to a pediatric gastroenterologist gave us no answers. It wasn't until January of this year when we took him to an allergist (as a direct result of stumbling onto this site in October of last year) that we FINALLY got a probable answer to his FTT (failure to thrive) and other problems (goopy eyes, arching of the back, not wanting to be held while eating, lethargic periods, periods of NO appetite, ashen color, etc, etc, etc) when he was an infant.

Probable answer? Food allergies. Our theory now is that he began having problems and losing weight while on breastmilk because I was eating things he had developed allergies too. Of the things he has since tested positive to, I was eating: peanuts, carrots, peaches, watermelon, and chocolate. He appeared to be doing better for a short time after switching to formula, because he was no longer being exposed to those allergens. However, after drinking the formula for a few days, he developed another allergy and began having problems again, which did not go away until we eliminated the formula and fed him solid foods only. See, one of the ingredients listed in the formula is coconut oil. He has since tested positive for a coconut allergy. We were effectively poisoning him, little by little, every day of his life for 8mo. =(

He did tremendously better once off the formula, but still had minor problems with rashes, goopy eyes, and other minor complaints. We think most of those were probably being caused by the occasional peaches and chocolate he was eating, if not from peanut products that we were unaware he was getting (we didn't know yet to read every label, but we weren't giving him obvious peanut products). Coconut is not a part of our diet anyway, so he wasn't getting anymore of that, and the carrots and watermelon he flat out refused to eat any time I offered them, so he was naturally avoiding those allergens as well.

Today he's still short, but his weight/height proportion is so good that he's actually a chunk o' hunk. =) I was SOOOOOOO pleased to be able to say that the first time. I still am really, because for months I knew he was sick but didn't know why and didn't know how to help him. I spent countless hours researching online, and took print-outs on various possible causes to my doctor, but not once did I suspect allergies. Apparently none of the 3 doctors that saw Matt during that time did either. Regardless of the fact that during this time we mentioned to our regular doctor that he had facial swelling after touching peanut butter to his mouth.

Another example of allergies affecting growth is my daughter, who has also always been small (though never in as bad a position as Matt was there for awhile!). We recently noticed a connection between her increased milk intake and her eczema flaring from mild to "Omigosh! What do I do now?" and eliminated milk from her diet to see what would happen. What happened is that her eczema clearly up almost completely within 2wks, but would flare after accidental exposures (even in minute amounts), AND that she gained *2 POUNDS!!!* in about 6wks. She has never gained so well! She too, is still small for her age, but again, her weight/height proportion is at a much better level now.

On May 25, 2001

Hi Peytons Mommy. I too only recently found out about my son PA. (4 months ago) Although I suspected PA, I let my son try a little tiny piece of a peanut (I too didn't know the dangers of having PA). That's when my eyes opened to the dangers, he immediately grabbed his throat and turned bright red. He said it was hard to breath, then he started vomitting, it was horrible to watch, he is only 3 years old. We rushed him to the hospital where the doctors told us he is anaphylactic to peanuts.

That's when my world turned upside down. I went on the internet and started my research on this allergy. I couldn't believe that I could have killed my son that night (I still think about what could have happened that night). It took me about a month to start sleeping properly again. For me though, I found that finding as much info on PA is extremely helpful in dealing with it. This site is a great start.

I used to eat a lot of peanut butter when I was pregnant. I never ate while nursing, but then again I only nursed for a month and a half. At this conference I attended on allergies in Kingston, there was a doctor (I think it was Dr. Vadas) there discussing the latest findings on peanut proteins being passed on to the baby through the breast milk. He said that they tested the breast milk and they found high levels of peanut protein in it. I don't know if it would be enough to cause a reaction, but he did say that the babies were being exposed to it. They are still trying to determine if this kind of exposure is actually making the babies immune to having PA or is making them more prone to having PA, because not all babies came down with PA after being exposed through breastmilk. I would speak to your allergist about it, he should know about this latest research.

Personally speaking, if I were to become pregnant again, I would avoid peanuts and peanut butter all together. Hope this helps.

Tina

On May 28, 2001

Hi, Thank you for all your responses. It's so nice to have the support and someone to talk to anytime. Any advice you can give me would be great. I have a question about Benedryl. Peyton's allergist didn't mention it...we just got the EpiPen from her. It seems that everyone has this Benedryl on hand at all times. Is it a prescription or over the counter? Does it seem to help? I don't ever want to have to give my son that EpiPen if it's just a mild reaction and the Benedryl could help. Does it work immediately?? Thanks again for responding!!!!

Peyton's Mommy

On May 29, 2001

Our Benadryl is OTC. We use it for any mild reactions Matt has to ANY of his allergens. It generally clears up these mild reactions within a few minutes. Our allergist has basically told *us* (allergists have differing opinions on this) to always use the Epipen, follow with a tsp of Benadryl, and a call to 911, with a peanut reaction, though. She's told us to use it:

If we know he has ingested peanuts, whether or not he is showing symptoms yet.

If we suspect he has ingested peanuts, whether or not he is showing symptoms yet.

If he has touched peanuts (he's contact sensitive) and has any respitory symptoms OR facial swelling OR has hives and any other symptom.

If he has any respitory symptoms OR facial swelling OR has hives and any other symptom; regardless of what caused or possibly caused the reaction.

She feels that the policy "Better Safe Than Sorry" applies here, and has said that she would rather we use it needlessly and deal with a hyperactive kid for a couple of hours, than hesitate to use the epipen because we're "not sure" when it is needed. Again, for *us*, our allergist said to use the Benadryl only (but epi later if any of the above situations came into play, of course) for the reactions we knew weren't caused by peanuts that included ONLY hives or redness (like around the mouth).

On May 29, 2001

Our 2 1/2 year old little girl is PA and was diagnosed at 17 months old. Regarding your question about Benadryl-we seem to have to use that a lot! We haven't ever had to give her an Epi-pen shot since she was diagnosed with her allergy (thank goodness), but she does get "topical" reactions to peanuts about once every couple weeks. She will get hives on her face or hands from the playground, grocery carts, toys at other children's houses, and at the mall. We think she is coming in contact with peanut residue and she just gets a few bumps on her face or hands. A teaspoon of Benadryl and us watching her CLOSELY seem to do the trick. I am always prepared to give her an epi-pen injection if needed, but so far none has been needed. I am glad you have found this web site, it will be very comforting and informative for you. Finding out about your child's allergies can be very overwhelming. You will find your "comfort zone" and it will become second nature to read labels, talk to people about it, and be able to sleep a little easier. It just takes time (and a lot of reading). [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] good luck with everything.

Shandra (mom to Madeline, 2 1/2 year old PA)

On May 29, 2001

Hello and welcome. Excellent advice in the above posts. I just wanted to say that we discovered my son was PA when he had an anaphylactic reaction at age 2 1/2. It was very scary and I felt much the same way you describe feeling.

On a positive note, we have learned to live with it. Although you must always remain vigilant, I found that I learned to come to terms with the majority of the emotions associated with finding out about the severity of the allergy. (Of course, tragedies like the death of 2 children last week bring those fears to the surface.) My son is now 4 1/2 and we have managed to keep him reaction free since that first anaphylactic reaction. He just completed his first year of preschool and takes many park district classes. It takes extra work to educate others, but it can be done!!! Take care!

**MattsMom: what an EXCELLENT decription on when to use the EPI-PEN. I am a firm believer on erring on the side of caution (I would tend to use the EPI-PEN if there was ANY QUESTION) and this was a great way to word it. I am printing it out to use with my sons teachers, etc.

On May 29, 2001

Hi, Thanks so much for the responses about the Benedryl!!! I get so worried about Peyton...I watch him closely as I feed him and after I feed him. His eyes seem to swell alot and he's getting the stuffy, runny nose back. We went to the park yesterday (for about 3 hours) and I'm just hoping that these symptoms are just from the environmental allergies (trees, grass)All this is overwhelming since I just found out about his PA and I realize it will get easier as time goes by. There are times that he just cries and cries (like he did the time he had a reaction to the pie with peanut extract)and I get so worried. I don't want him to grow up too fast, but I sometimes wish he was old enough to tell me what is wrong!!!! He has eczema really bad (especially around his mouth) and I'm ALSO worried if I will be able to tell if he's having a reaction (rash around his mouth)if he ingests any peanut. I give him a bath and slather him with moisturizers every day but, his mouth and thumb are the only areas I can't completely clear up. I'm glad I have people I can talk to here and you ALL know what I'm going through!!!

Peyton's Mommy

On Jun 12, 2001

Hello. I just recently found this board and Peyton's mommy is the first post I read and I felt I had to respond to it right away. My daughter is four and we found out she had PA last year. The thing that makes me so mad is that before that time she had already had 3 exposures. After we found out she had another serious exposure at a party where someone gave her a PB cookie. It really scares me because I know that she becomes more sensitized w/ each exposure and she hasn't even started school yet. The main reason I am posting is the military pediatrician factor. My daughter was my first child and I did things by the book. I followed the What to expect books which looking back really only mentions the hazards of choking when it comes to peanuts. I breast fed and waited a little late to start solids against all types of pressure! My husband is in the Army but when my daughter was close to a year we were visiting my family near an AFB and for some reason she had a check-up before her 12 month well baby. She was small weight wise but looked healthy w/ baby fat. The Dr. suggested that I try giving her PB sandwiches to fatten her up. The thing that makes me mad is that he knew hers and my own history of excema and maybe even grandmother's asthma. Now I know that excema, resp. allergies and food allergies are all related in some way. This was 3 1/2 yrs. ago surely he would have known this info and also the fact that children shouldn't even be introduced to peanuts until age 3 or 4. As far as being mad, it gets worse, she took a bite of the sandwich and broke out in hives all over, so I took her to their emergency room. The doc said nothing like no peanuts ever or possibly a peanut allergy. My baby books never discussed this allergy and so stupidly I thought you outgrow food allergies and around 2 1/2 yrs of age she had a piece of maple nut candy and started to have a runny nose and teary eyes. We had no idea what was causing it at the time. I feel so stupid and so terrible. To make it worse I exposed her to it yet another time. I was eating a PB and J sandwich and thought well let's see if she likes PB now, up until the time she always just said she didn't like it w/out even trying it. She was three and half this time and of course had no recollection of having it so I guess this was some type of inner survival mechanism which is why I was surprised she took the PB cookie and also the fact she was so shy. Well getting back to my part in it. I gave her a piece of crust w/ PB on it the width of a piece of thread and maybe only 1/4 to 1/2 in in length and she started to have the runny nose and watery eyes. We gave her tylenol allergy chewable and it went away. A couple ofmonths later I brought it up to the Dr. and she said right away w/out even testing that she had a PA. I feel so guilty the number of times she has been exposed. I guess I really shouldn't blame anyone, but if the ER doc had said that it might be PA then I would never have even given it to her even if I thought that she could outgrow it. They must have known about the risks and effects even 3 1/2 yrs ago, right? I wish I could bring a law suit up against them and then use the money for schooling and donation to research for a vaccination, but unfortunately you can't sue military docs. I'm so sorry that my very first post is so long but I am very scared and still very angry. I'm not an outwardly religious person, but I pray every night for a cure or vaccination and that my 11 month old son doesn't develope any allergies.

On Jun 12, 2001

Hi PEYTON'S MOMMY. You'll get lots of support and advice off this board that's for sure! My daughter is eleven and we found out she was PA when she was 18 month. I only found out about this board a few months ago, (I didn't have internet access until then)so I've had little moral or emotional support over the last ten years.

Definitely post any questions you have even if they sound silly - a lot of us have had or still have the same questions.

In some ways I've been lucky. My daughter had other allergies (milk,egg,wheat,citrus)until she was around four, so we went through a lot of problems early on, but her other allergies have cleared up and her asthma is mild and under control.

So there is hope and with the support of the people on this board that I'm just beginning to get to know, you'll get through it just fine. And probably have a lot less grey hair than I have right now!!!

On Jun 12, 2001

Peytons Mommy:

Be careful with everything you eat too. Also be careful not to kiss him if you'd had peanut butter, etc. My son is highly allergic as well and cannot even smell or touch it.

On Jun 29, 2001

Hi Peyton's Mommy-I am pretty new to this too(we found out my son Jake was PA at 6 months old (he's now 8 1/2 months) but I've gathered a LOT of info--we went to FAAN's conference a few weeks ago (Food Allergy & Anaphylaxis Network--go t their website--lots of useful info & materials)and have been to one of the world's leading allergists.

Yes-you can cause an allergic reaction in the baby while you breastfeed him if you eat what he is allergic to. There have even been cases where the baby went into anaphylaxis while breastfeeding. This is scary & comes with a lot of responsibility but remember you have to eat and eat often & a lot--your baby's health (and yours) depends on it. I am still breastfeeding Jake and have to avoid eveything he is allergic to (peanuts, soy, eggs, peas, sensitive to milk, and I avoid all other nuts, fish & shellfish too, and I limit wheat. Not easy but I do it. *** However, Note that some doctors may suggest that you stop breastfeeding if they feel it is actually hurting your baby--terrible failure to thrive, bloody eczema all over, etc. so you should talk to your pediatrician and allergist and probably a nutritionist.

Since he still seems to be reacting to something, don't rule out other food allergies & assume it's environmental. You could either have him tested for the other main allergens or try eliminating them one at a time from your diet for 2 weeks & see if his symptoms clear up. Ask your doctors about the testng and about elimination diets

For the eczema on his hand and face, I recently discovered that Vaseline works best as a total body moisturizer for Jake (after I'd been spending $60 a month on Aquaphor, Eucerin, etc.) but on his hands which he did make bleed from constant sucking on them, we put the Lanolin ointment that's made for breastfeeding--it's safe for them to eat & it's so thick & goopy it stays on longer & protects & moisturizes better (does get on clothes though--oh well). Also, at night after he's fallen asleep, if his hands are bad I'll put a little MILD steroid cream on them--ask your doctor. We also soak him in Aveeno bath every other day for 10 minutes then get him covered in Vaseline within 3 minutes of coming out of tub--this "locks in" the moisture, but 3 minutes goes by fast so you have to work fast--As soon as he comes out of the water I sing the numbers up to 180 to count the time & make it fun for Jake while I grease him up.

DON'T be afraid to use the Epi-Pen--if you give it to him & he didn't need it the only thing that will happen is the area where he got the shot will be a little sore for a little while & he'll be a little revved up for about 15 minutes. If you don't give it to him & he needs it he could die.

You need to do your research so you'll be smart & know how to help keep your son safe and so you'll feel A LITTLE less helpless. These boards help a lot. Also go to the FAAN website & consider purchasing some of their literature. Right now I'm reading The Parent's Guide to Food Allergies by Marianne S. Barber.

Good luck & stay safe

On Jun 29, 2001

Welcome to our world! When my son was first diagnosed with his allergies, find this sight and reading all of the postings had me in tears most days. Now that I have been dealing with it for a year, your story brought it all back, I am sure I write for everyone, WE KNOW HOW YOU FEEL!

It does get better. My son is allergic to wheat, milk, soy, oats, eggs, and Peanuts. If fact, just in May we went back for our one year allergy appointment. His reaction was still so severe to milk, eggs and peanuts, we were told they wouldn't even test him again for four years. But the bright side, maybe he can have oats, soy and wheat - we are beinging trials.

My son was basically born with eczema. It turned out to be the dairy I consumed and passed to him in my breast milk. We finally, through our allergist, found formula that he could have, it is called Neocate. Neocate is amino acid based and boy is my son thriving. It can be expensive, but insurance covers with a note from the doctor stating the life threatening allergy.

As far as the eczema goes we use Oclovate, it is a steroid so we use it sparingly. I have found that if Tommy gets a bath everyother day and can soak in it for at least 20 minutes, the without being completely dried off (more blotting) and apply CUREL mosturizer, we fend off the eczema pretty well. We also avoid all of the foods he is allergic to. Interestingly enough if you have a health food store near you - not a Whole Foods, but a whole in the wall fanatic health food store - they can usually help. The one near me had me write down everything my son ate for a week. She reviewed and told me that grapes and rasins we the culprit. Tommy loved them, but I took them away and his eczema cleared up so that many days we don't even see it.

You doctor should also be able to tell you how much Benadryl to administer (my guess 1/2 teaspoon) We use it when ever we see hives, in all of Thomas' cases (since the 1st) his only contact has been touch, no ingestion. The Benadryl works great for that. Also you allergist should be able to provide you with ingredient lists, as milk and peanuts are not always called milk and peanuts. I bought laminated ones from FAAN over the internet. They come in handy and I have given them to every member of the family.

School is a tricky thing, and I too have a while to worry about it since Tommy is 18mos. I more concentrate on worring about babysitters, camp, the park, the swimming pool, etc. There are so many places closer to home to make me nerotic. If Tommy still has severe allergies when it is time for school, I may join the elite group of Home Schoolers.

Good Luck!

On Jun 29, 2001

Welcome!

As to the growth issue, my son didn't lag too much on growth, but his gross motor skills were four to five months behind that of his non-PA siblings. He couldn't lift up his upper body with his arms until six months, didn't crawl until a year, and didn't walk until 17 months. I have no doubt that this was due to his body working on other things like cross-contamination from peanut products and exposure through breast milk. He's 4 1/2 and fine now, but it was amazing how even his personality changed a couple months after diagnosis and started avoiding peanuts. He went from a timid little boy to a little daredevil and had a nice growth spurt.

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