I could really use your help!

Author:
Publish date:
Updated on

We realized our son was pa at 11 mos. I gave him a pb&j 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] )

When 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.

When 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!

Now 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).

I 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.

Thanks for reading this and sorry so long! I would really appreciate any input you have!

On Apr 12, 2002

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.

On Apr 12, 2002

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).]

On Apr 13, 2002

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!

On Apr 13, 2002

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.

On Apr 13, 2002

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.

On Apr 13, 2002

mpeters and MarlaH,

I totally agree.

On Apr 13, 2002

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).]

On Apr 14, 2002

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).]

On Apr 14, 2002

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!

On Apr 14, 2002

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?!

On Apr 15, 2002

MPeters,I found that article online, and that got me wondering about other research in the last few years--what the scientific articles really say vs what gets into the newspapers. I found a really great Canadian website that is devoted to peanut allergy research, and contains summaries of numerous scientific articles regarding outgrowing peanut allergy, as well as hyperlinks to articles: . Sorry, I must have typed something wrongly, but it should not be hard to find, and may well have been noted on PA.com before. If nothing else, we are lucky to be living at a time when so much constructive research attention is being paid to food allergies.

On Apr 16, 2002

Carefulmom, thanks for taking the time to help me sort this out! I really admire you for avoiding egg and peanut so successfully! I am so happy my son doesn't need a peanut-free school - I know it would be an uphill battle! (My own SIL told me she would definitely complain!) And my pa son is one of her son's best friends! I know we've been doing a great job avoiding accidental ingestions; perhaps he just isn't sensitive to contact and airborne exposures.

Aztec765, thanks for sharing your story. I hadn't really considered all the worry that would go along with NOT having an Epi available! I didn't think allergies could come back, but I guess sometimes they do.

Mpeters, we were looking at two different studies! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Marla H, thanks for that great website! I've been going crazy trying to find the actual research studies; my eyes still hurt from staying up late last night to read and read and read...

[This message has been edited by Grateful (edited April 16, 2002).]

On Apr 16, 2002

Grateful, I am wishing the best for your family. It sounds like you have really good chance, because from what you describe your child fits the criteria to be a potential "resolver". Good luck!

MarlaH, thanks for the site. I have not checked it out yet, but I've been looking for a way to get research and stats. compiled. That may save me alot of time at the library. I always believe in going to the source because I imagine journalists may not have the time or desire to critically analyze research literature.

On Apr 20, 2002

Grateful, I think my daughter may have had her very first reaction to peanut last night. As you remember, my situation is similar to yours, in that her CAP RAST is very high, but she has never had a contact or airborne reaction. What happened last night is a long story---it is on the "Living with PA Board" titled something like "has anyone ever used a product by WholeSoy called Glace". She had a mild reaction, she is fine now, but I think that the product may be on shared equipment with peanuts. I am going to call them Monday. It seems like so many people on these boards make their own ice cream, because of concerns about cross-contamination. This product did not have a may contain on it, but it really did appear to be an allergic reaction. After I call them and talk to her allergist, I`ll post more. If she had any reaction at all from eating a product on shared equipment, that shows me that she is very sensitive. As you can probably imagine, a food challenge for her would probably produce fairly severe symptoms. So it looks like being reaction free for years (my daughter never had a peanut reaction until now) really doesn`t mean someone has outgrown it.

[This message has been edited by Carefulmom (edited April 20, 2002).]

On Apr 22, 2002

Carefulmom, I am so sorry your daughter had a reaction and so glad it was mild! I will follow your post on the other board. Thanks again for all your help!

On Apr 22, 2002

Grateful, it looks like I will be joining the moms who make their own ice cream! I definitely would not food challenge your child. Here`s what happened. I called all three companies. The company that made the sprinkles never processes any milk, eggs, peanuts, or tree nuts in that plant. The company that made the strawberry sauce never processes any milk, eggs, peanuts, or tree nuts on the same line. The WholeSoy imitation ice cream gets made in two plants. The first plant makes the soy, the second plant which turns it into a frozen dessert is the Howler`s ice cream plant! it is made on the same line as real (milk-containing) ice cream, and it is on the same line as the flavor Peanut Butter Fudge! I was furious. First of all, people who are buying soy imitation ice cream are probably buying it because they are allergic to milk, so shared equipment with milk should be stated and the shared equipment with peanuts is also unacceptable! So I talked to the president of the company. I asked why there was no "may contain" to warn us. He said that the equipment is cleaned really really well, and he just doesn`t think there could be any peanut residue in the non-peanut products. I said apparently there is, because she had a reaction, and one reaction is one reaction too many. I said the next person could die, and they should put on a may contain. Because of the shared equipment with milk, they rountinely test the product twice a year for milk residue, BUT THEY DON`T TEST IT FOR PEANUTS!!!! I think the problem was cross contamination with peanuts, not milk, because my daughter`s CAPRAST to milk is only 104, and her CAPRAST to peanut is 1800! I think if she ate something cross-contaminated with milk, she probably wouldn`t have a reaction. So this was "food challenge" for peanut. They are sending my leftover WholeSoy imitation ice cream to a lab in Nebraska to have it tested for milk and peanuts. Just wondering, do you make ice cream for your child or do you buy it? In the past there were a few times I gave my daughter Rice Dream and she coughed very slightly after, but I never thought anything of it. I think that was probably a reaction too. I stopped giving Rice Dream imitation ice cream when I found out it was on shared equipment with peanuts.

On Apr 23, 2002

Carefulmom, I do buy ice cream and my son has never reacted. He eats Breyers vanilla and natural vanilla; Shenandoah's Pride vanilla; and Hershey's vanilla, coconut, crazy vanilla, peppermint, and green mint chip. And, I have to admit, he eats the Hershey's at an ice cream parlor in our local mall. They know my son and wash the scoop an extra time for him but that is our only precaution and I know they have peanut butter ice cream. The reason we do the ice cream thing is that we did it for the 2 years we knew he was allergic but didn't realize how serious pa is. We have been doing this for 5 years now with no problems at all. I am a nervous wreck about anything new that he tries - even Hershey bars this past Easter after reading here that they were safe! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

It is these things like the ice cream parlor ice cream and the fact that he has eaten things cooked in peanut oil, not to mention the whole peanut butter situation at school for almost 3 years, that make me wonder whether he is really still allergic. I always take the unsafe treats out of his treat bags, even pb cups, and give him the safe stuff and it never occurred to me to have people brush their teeth after eating peanuts! I know he hasn't eaten a peanut product in all this time but these other potential exposures - I don't understand why we haven't had at least one problem. (Remember, his first 2 reactions were mainly contact reactions.)

If he is allergic and just not very sensitive, I am thrilled that he can lead such a "normal" life. I guess I just don't want to find out in 10 years that he was never allergic beyond toddlerhood and I put him through all these precautions for nothing without even trying to find out whether he had, in fact, outgrown it.

On Apr 23, 2002

Since my daughter was reaction free for seven years until last week and clearly is PA, I believe your son is too. The brands of ice cream you mentioned, I have never given because she can`t have real ice cream. Maybe your brands are on peanut free equipment, and maybe that is why he hasn`t reacted. I think Hershey`s is very allergy aware. Remember, my daughter had Rice Dream at least a hundred times (for two or three years) and never had an obvious reaction, also had this WholeSoy product for about three months and never a reaction. They haven`t changed their manufacturing practices---I just got lucky until now. Also, we saw the allergist today, he agreed it was a reaction due to cross-contamination from peanuts, and said that 99 percent of parents would have never noticed such a mild reaction. He also said what probably happened was a small fraction of a peanut ended up in the batch and testing the part my daughter didn`t eat probably won`t show peanut residue--It was probably just in one bite. So maybe your son has reacted and you didn`t know. If your son suddenly develops a slight cough after eating ice cream that wasn`t there before eating the ice cream, that could be a mild reaction. That happened to us a few times in the past, but I never thought anything of it until I came to this site and saw that some of the mothers were making their own ice cream due to cross-contamination concerns. When I read that I thought,"Maybe that was why she coughed after eating ice cream, next time that happens I should ask myself if it is a reaction." We also went to Baskin Robbins a few years ago, where they used a clean scooper to scoop some sort of sorbet for my daughter and had no problem. Now I wouldn`t do it. Anyhow, I wouldn`t food challenge him---I think like me your day will come when he gets an unintentional food challenge, and you will have the proof you need.

On Apr 23, 2002

I agree with carefulmom. Be especially careful about ice cream parlors. My daughter reacted to cross contaminated ice cream from a shared scoop and a peanut butter flavor. (coughing, sneezing, wheezing, rash) Even if they clean the scoop for you the ice cream is already contaminated from previous scooping. we also had enjoyed special ice cream outings, so it was a great loss to give it up. Now we buy only soft serve or an unopened gallon container for our special treats. And I feel even safer when we take it home to eat it.

On Apr 24, 2002

We've also had a reaction--throat closing, difficulty breathing-- in an ice cream restaurant from a scoop that had been used for nuts and not washed off. Having said that, however, my son does eat ice cream out in places where we can see exactly how things are being done.

On Apr 25, 2002

Thank you everybody! You have given me a lot to think about! I have been doing more research and think perhaps my son's CAP RAST results are incorrect. Since he tested 87.50 which is level 5, the way I understand it is that he should be extremely sensitive to peanut, although he may react mildly. I know he's not very sensitive due to the situation at school. (I eat lunch with him once a week so I've seen it firsthand!) Our first course of action will be a new CAP RAST in June when we return to the allergist. I'll let you know how it turns out! Again, thank you and stay safe!

On Apr 25, 2002

My daughter`s allergist told me when we went on Tuesday that some labs are very inaccurate with CAP-RAST. I think it is a good idea to repeat your son`s. My daughter`s is getting repeated at a more accurate lab, not to see if it is better, but to see if it is worse, due to the reaction from the cross-contaminated imitation ice cream.

On Apr 25, 2002

Carefulmom, that is so interesting because I was looking at the CAP-RAST report last night to see where it was done and it looked as though the allergist's own hospital lab did the test! It is a university hospital so maybe they are well-equipped but I would love to know what lab yours is being sent to. Perhaps I could get my ped. to order a CAP-RAST sent to your lab to compare with the allergist's results.

Thank you again for all your help and I hope you get good news on your daughter's test! Please let me know how it goes.

On Apr 26, 2002

The CAP-RAST is being done at Kaiser in Los Angeles. I don`t have Kaiser insurance, so the allergist is working it out so that my insurance company will be billed and I don`t have to pay. I don`t know if the blood is less reliable if it is shipped (assuming you don`t live in Los Angeles). For me, I don`t really see this as a situation that has potential for good news. Now that my daughter has had her first reaction from cross-contaminated ice cream which is a pretty small exposure, a low CAP-RAST won`t make me feel any better, and a high one will only make me feel worse. I think Sinai in New York is supposed to have a really accurate CAP-RAST, but again that depends on whether it is okay to ship the blood, assuming you don`t live in New York.

On Apr 29, 2002

Thanks for the info! I live on the East Coast so maybe New York would be a better option. I'll have to look into it.

I guess I was hoping your daughter would have a low number so she would have a greater possibility of outgrowing this. This is what I hope for my son as well! Another high result will certainly be difficult. I need to go back and re-read how you determined your daughter reacted to peanut instead of something else. If it was only based on CAP-RAST numbers, remember my son has a level 5 CAP-RAST but does not seem to be very sensitive!

On Apr 29, 2002

The reason her allergist and I both think it was from peanuts, not milk, cross-contamination, is that her milk CAP-RAST is 140, and her peanut CAP-RAST is 1804, 12 times as high. Also, the President of the ice cream company told me they test the ice cream twice a year to make sure it is negative for milk, but they do not test it for peanut. Lastly, I think it is harder to get equipment clean from peanuts compared to milk, because milk is liquid. I`ve heard that a fragment of a peanut can get lodged in the equipment even with cleaning and then get released many batches later (when a different product is being made). I don`t think that is as likely with milk.

On Apr 30, 2002

Careful Mom,

Could you please post the information you seem to have that says the CAP RAST can predict an individual's reaction because of a low or high score? Anything I've read or been told is that nothing can predict the reaction, regardless of the score.

Curious, Tammy

P.S. Please see the post under Living with PA by Jacksmom (about still being allergic with a negative CAP RAST).

[This message has been edited by Lam (edited April 30, 2002).]

Related