I could really use your help!

Posted on: Fri, 04/12/2002 - 1:02pm
Grateful's picture
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pWe realized our son was pa at 11 mos. I gave him a pbj sandwich of which he only took 1 or 2 bites. He seemed fine except for a red rash on his face every place the pb had touched. The rash never spread or turned into hives. About a week later, I tried pb again and again a red rash where pb touched his skin. Also maybe 1 messy diaper(DH remembers this part, I don't, so it must have been no big deal). To this day he always gets a rash whenever any food is left on his face for an extended period of time, he has very sensitive skin, but this rash happened very quickly. Anyway, we assumed pa and thought okay, we won't feed him peanuts and pb. (Luckily, being our first child, we weren't into giving him cookies, candy and junk food at this tender age, so I guess we avoided a lot of contamination issues without realizing it! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] )/p
pWhen he was 3 and about to start preschool, we visited an allergist who skin-tested for peanut and he had a 2+ reaction. At this point we educated ourselves and became much more careful about label-reading, etc. and began to carry Benadryl and Epi-pens. Allergist says he will re-test before Kindergarten./p
pWhen he was 5 (last summer), we went back to the allergist, confident that he had outgrown the allergy. After all, we had gone 4 years with no reactions and he had been in a preschool that was not peanut-free for 2 of those years (we did take a lot of precautions and my son never eats anything at school that doesn't come from home) and the earlier 2 years we had no clue of the seriousness of this allergy and were not careful beyond the obvious peanut and pb. He tested 4++ on the skin test (they wiped it off after a few minutes) and Level 5 on the CAP RAST. Needless to say, we were devastated!/p
pNow he has been in Kindergarten since August in a school that is not nut-free and still no reactions. Although he doesn't sit beside the children who pack (the school only rarely puts peanut in a dessert and not in any other food so we decided to seat my son in the middle of the kids who buy their lunches) they are out of order and all over each other, hugging, holding hands, etc. before they even leave the cafeteria! They are supposed to wash their hands after lunch but after several months of school the teacher admitted she never remembered to do this. I have told my son to wash his hands if he ever feels anything sticky on them and since there hadn't been a problem so far I didn't complain. After lunch, they have a playtime in the room so I would think he has certainly touched peanut residue on more than one occasion and from the original rashes I assume he is or was contact sensitive. They also eat a snack in the room (each child brings his/her own with no peanut restrictions). /p
pI plan to have another CAP RAST done this summer. We are now almost 5 years without a reaction and I guess my questions are as follows: Am I crazy to think he has outgrown his pa despite the test results? How accurate are the tests - I know a skin test will show positive for years after an allergy is outgrown and I've heard the CAP RAST can do this as well. Is it really possible for an allergic child to go that long with no reaction, especially if he is not in a nut-free environment? I know I have not been as careful as many of you are but since we have had no problems I am comfortable with our balance of allergy management and normal life. The allergist did not seem at all surprised by the skin test and would have done a food challenge if the CAP RAST had been low enough. DH and I would like a food challenge because our gut feeling is that he is not allergic. /p
pThanks for reading this and sorry so long! I would really appreciate any input you have!/p

Posted on: Fri, 04/12/2002 - 1:41pm
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Joined: 05/28/2009 - 16:42

Grateful,
Yes it is possible to go many years with out a reaction. Your son may not be sensitive to touch, just ingestion. The CAP RAST test is the most accurate. As Dr. Sampson explained it to me, it measures the likelihood of having reaction, not the severity. The higher your numbers, the more likely you are to have a allergic reaction when exposed to the allergen.
I personally, would not go ahead with a food challenge if my son's CAP RAST numbers were high and besides, I don't think you could find a allergist would administer it. Why risk his life, the numbers on the CAP RAST don't lie.
Don't give up hope, your son may still out grow his PA . He is still very young.

Posted on: Fri, 04/12/2002 - 2:44pm
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Eighty percent do not outgrow PA, twenty percent do. The CAP-RAST is extrememly predictive of a positive food challenge. Almost certainly your son would have a positive food challenge. My daughter`s situation is similar to your son`s. She has a very high CAP-RAST and has never had a reaction. The past year and a half her class has been peanut free and we have been very careful, but nevertheless I would find it hard to believe that there has never been a situation of one of her friends eating peanuts maybe for breakfast before school or for lunch before a playdate. I`m sure these kids at home don`t all wash their hands after eating PB, and then they come to our house. In preschool there was no peanut free classroom, and there was no hand washing. Right at the end of preschool, we found out she was allergic to peanuts. Obviously she was allergic sooner than the day of the skin test. I`m sure somewhere she has had contact exposure, and she has not had a reaction. I consider myself very lucky. I believe your son`s CAP-RAST is a good indicator that he is allergic. You are lucky that he doesn`t need a peanut free class. I wouldn`t do a challenge, because it will probably be positive and may be life threatening. Some allergists also feel that exposure decreases their chance of outgrowing it.
[This message has been edited by Carefulmom (edited April 13, 2002).]

Posted on: Sat, 04/13/2002 - 5:16am
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I have read some of the research articles and noticed that the 20% cited to outgrow peanut allergy is 20% of those included in the study. People were excluded from the study if they had ever had a severe reaction or if they had had a reaction within the last 18 months. So you cannot really say that 20% of kids with PA will outgrow it. Only 20% of those included in the study (mild to moderate reactions and no recent reactions) will outgrow it. My daughter would not have been included in the study, nor would many of the other kids I've heard about on this site. The researchers believe that some of their subjects may have been falsely diagnosed with PA in the first place. The data is actually skewed because of this. I'm afraid the percentages are misleading. Sorry to bear bad news. There is still hope for all our kids. Lets hope the vaccine research gets back on track. Go Johns Hopkins!

Posted on: Sat, 04/13/2002 - 8:55am
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Joined: 02/26/2002 - 09:00

MPeters, I was glad to see what you had written because this is just what our allergist told us when I took in my 13 year old son this month for testing--past severe reactions (none recent). He is a respected doctor in the Boston area who seemed to know about recent research. He said that he doesn't believe the 20% figure himself, and suspects that few, if any, truly allergic kids ever outgrow allergies to things like peanuts, tree nuts, or fish/shellfish. I feel bad for parents who may cling unrealistically to this statistic, and like you, I think the real hope for dealing with allergies lies elsewhere.

Posted on: Sat, 04/13/2002 - 8:58am
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Joined: 02/26/2002 - 09:00

MPeters, I was glad to see what you had written because this is just what our allergist told us when I took in my 13 year old son this month for testing--past severe reactions (none recent). He is a respected doctor in the Boston area who seemed to know about recent research. He said that he doesn't believe the 20% figure himself, and suspects that few, if any, truly allergic kids ever outgrow allergies to things like peanuts, tree nuts, or fish/shellfish. I feel bad for parents who may cling unrealistically to this statistic, and like you, I think the real hope for dealing with allergies lies elsewhere.

Posted on: Sat, 04/13/2002 - 9:04am
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Joined: 11/14/2001 - 09:00

mpeters and MarlaH,
I totally agree.

Posted on: Sat, 04/13/2002 - 10:37am
Grateful's picture
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Joined: 04/10/2002 - 09:00

Thank you everyone, for taking the time to respond! I appreciate everyone's help!
Carefulmom - do you ever wonder whether your daughter is actually allergic since she has never had a reaction? How does anyone know the accuracy of a CAP RAST (especially in the case of an outgrown allergy) if they don't ever food challenge the children with high results and no recent reactions? I have read over and over again that food allergy tests are only useful in conjunction with the person's history of reactions. I'm curious how you feel since we seem to be in the same boat! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] I am happy to do everything I can to protect my son, and I am thrilled that he does so well in a non-peanut free school, but I feel I owe it to him to be as informed about all of this as possible! (And I've had enough bad experiences with doctors to leave me forever skeptical of what they say!)
I spoke with a woman several weeks ago who told me her infant son was off the charts on CAP RAST tests for a multitude of foods (including peanut)about a year ago and turns out to only be allergic to one (almond, I think). This got me interested in finding out more about other people's experiences. As far as people outgrowing food allergies my SIL was anaphylactic to shellfish when she was young, carried Epi-pen forever, etc. and found out by accident a few years ago that she could now eat shellfish and has been enjoying it ever since!
MPeters, I have also read the study results and the way I understood it was that the people with recent reactions and/or high CAP-RAST scores were excluded from the food challenge and presumed still allergic but ARE included in the final numbers as part of the 80% that did not outgrow the allergy. I also understood from what I read that every person included in the study had experienced a doctor-documented allergic reaction to peanut at some point in their history. This was to rule out the possibility of including people who were never allergic in the first place! IMO, the study seemed to be very carefully done and very encouraging for those of us whose children have reacted mildly!
As far as I am concerned, you can never have enough information so please, everyone, keep telling me what you think!
[This message has been edited by Grateful (edited April 13, 2002).]

Posted on: Sun, 04/14/2002 - 1:53am
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Grateful, I`m with you on the 80 percent---I also read that 80 percent of all people with PA do not outgrow it and 20 percent do outgrow it. There were no subcategories in the study I read---i.e., it was not specific to people who have had reactions in the past or specific to anything else---it was just PA. And yes, I definitely consider my daugher to be allergic to peanuts. Only because of my vigiliance has she never had a reaction. For example at the movies, we only go to a first morning show so there are no crumbs from the previous show, and we bring all our food. The CAP RAST is extrememly predictive of failing a food challenge, while the RAST may not be. I truly believe that if my daughter ate a fraction of a peanut I would be using the Epipen. So I think I am very lucky that she has never had a contact reaction, especially in preschool where we didn`t know she was PA and kids are so messy. It was because of her CAP RAST that her doctor decided she should have a peanut free classroom. I just consider myself lucky that she didn`t have a reaction, or maybe in preschool before we were so cautious, she may have had a mild reaction that was undetected. It`s a very hard decision whether to request a peanut free classroom for your child. One doesn`t want to make unnecessary demands on the school, but personally I would rather be safe than sorry, especially when I am not there. When I hear about other people`s children who are PA having contact reactions, I don`t assume that my child`s PA is less severe but rather that I am more cautious. For example, I know of someone whose child had a contact reaction at a Christmas dinner. We don`t even go anywhere peanuts are served, so that would never happen to us. We also don`t fly unless we can get a peanut free flight. Again, maybe nothing would happen if my daughter sat on a plane with 200 people eating peanuts, but there is only one way to know for sure, and I don`t want to put it to the test. I used the Epipen once for egg, and believe me I never want to be doing that again. And by the way,since she did have a severe reaction to egg, this may help clarify the situation: Once we knew she was allergic to egg, obviously I never gave it again, and since then she has never had an egg reaction, although I`m sure in preschool kids ate sandwiches with mayonnaise and didn`t wash their hands.
[This message has been edited by Carefulmom (edited April 14, 2002).]

Posted on: Sun, 04/14/2002 - 4:52am
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Joined: 10/16/2001 - 09:00

A student in my class was told two years ago that he had outgrown his peanut allergy - he had a food challenge because his CAP Rast was low enough to do it. They threw away all of the epi pens and the child ate whatever he wanted. A few weeks ago, he had a reaction to eating one peanut that necessitated going to the hospital. Just something to think about!

Posted on: Sun, 04/14/2002 - 5:33am
mpeters's picture
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How scary to think it could return like that!
I looked at the literature I have. Here are the numbers from one study published in 1998 British Medical Journal.
Total number of PA kids studied: 230 - all with documented PA
Number challenged: 120 - Those challenged were kids with negative skin pricks, or positive peanut exposure with no reaction, or positive skin prick with no recent reaction or by parent request, no children with life threatening reactions were included.
Number of resolved cases out of the 120 challenged: 22
22/120 = 18.3% This is the figure reported in the final analysis. This does not include the children who were not challenged.
This is a great study because it is one of the first times peanut allergy was ever considered anything but a life sentence. We just have to be careful how we interpret it. The researchers say that 18% of children who fit the criteria to be challenged were resolvers, not 18% of all the PA children in the study.
This is just one study. I will try to lay my hands on more through the medical school library and maybe I can put together a better synopsis.
An epidemiologist (biostatistics) friend of mine likes to say "There are lies, damn lies, and then statistics" Unfortunately alot of journalists report research findings without all the details.
I do not think this is bad news. There is still hope. I hope for every one of us that this nightmare will leave our lives. I still cry and lie awake at night imagining what could happen to my daughter. I do not know if other people who do not have this in their lives realise how deep the anxiety runs. I do hope your child is one that will outgrow this allergy. Honestly I do not believe my child will, and unfortunately my instincts are usually right. It is hard for me to think positively when I feel so certain that she falls in the unlucky group.
I think I'm just pouring out my feelings now. Sorry. I guess this forum is here for that, though, right?!

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