Food Tolerance testing help needed

Posted on: Tue, 03/13/2001 - 6:05am
SusanMO's picture
Joined: 03/13/2001 - 09:00

pI just recently found this forum and have decided to come to you for advice. I have a 5-year-old PA son who is also allergic to tree nuts, shellfish and cat saliva. Without going into a lot of background information, my son had a food tolerance test on peanuts performed under the advice of his pediatric allergist. Although my son tested positive on the skin test for peanuts, the doctor was hoping he had outgrown his allergy since he hadn't had a reaction since he was 3 and his RAST test came back negative. (His lack of reaction can be attributed to avoidance.) My sons history of allergic reaction to peanuts is vomiting with ingestion, hives with contact and his eyes bug out if it's placed in front of him. Fortunately he has never had an anaphylactic reaction. I never really felt completely comfortable with taking him for this test, but hoped like the doctor that maybe there was a chance he had outgrown his allergy. I also took comfort in the fact that this test was being performed in a Children's Hospital. We were greeted by the person who administered the test and then received a 5 minute consult with the doctor who was working the clinic that day. We NEVER saw this doctor again! I was told there were 13 steps to the food challenge and if he made it to the end, he would be considered allergy free. I never told my son why we were there, but amazingly by the second dose (which is the equivalent of 4 sugar granule size of peanuts mixed in pudding), my son detected peanut and got agitated. I was amazed since it had been almost two years since he had even tasted it and that his body knew exactly what was in that pudding. By the seven dose (which would have given him the combined total of two peanuts) he vomited in a pan. He had been complaining of an upset stomach since the third dose. I assumed at this point the test would be over. He even had three hives break out on his lips from the skin contact with his vomit. The nurse administering the test said they couldn't consider what he did a valid vomit and he would have to take the next step to make the test valid. (All of this information was coming via the doctor.) They were skeptical as to whether he actually vomited or if he just spit it out. Against my better judgement and my insistence that what he did was how his past reactions were (meaning immediate vomiting)I made my son take the next dose. This time he threw up in his left hand and he wiped his chin with his right hand. He immediately broke out in hives in all of the contact spots and within a few minutes, the hives started spreading. He became extremely agitated and started itching all over. He was given a dose of Benadryl and then was observed for the next two hours. He even had hives on his feet from where his vomit soaked through his socks. Anyway, I was kind of ticked off when I left for several reasons. I was mad at myself for making my son take that next dose. I knew my son vomited, I shouldn't have to prove whether he had a valid vomit or not. Second, I was mad that all of the information and opinions from the doctor was coming via the nurse. Why didn't he ever come to examine my son? After all, he wrote a report that went to my allergist as well as my pediatrician. How can a doctor write a report on something they didn't even see? Another reason I got mad came a couple of weeks later. My son's allergist called wanting to discuss the results and he surprisingly said to me he wants to redo the test in 3 years. I informed him the only way I would allow my son to be force fed peanuts in the future was if he passed a skin tolerance test first. The doctor said the skin tolerance has nothing to do with ingesting. DUH!!! Of course it does! If he can't touch it.....he can't eat it! I don't care if he ever made it completely through an ingestion test, if touching it makes him break out in hives, he still can't have it! I have an appointment with his allergist in two weeks for an asthma check up and I'm already worried about another confrontation with him. I have been told he is the best pediatric allergist in the St. Louis area, but I'm not going to argue with him over something as traumatic as this. Doesn't it seem logical if he can't pass a skin contact test, why even bother with a food ingestion test? He also wanted me to schedule a tolerance test for pecans, but of course I have not and have no intention of doing it. I guess I am asking for some advice and support on how I should stick to my feelings on this subject and how do I argue with an expert on the subject? Unlike him, I don't look at my son as a clinical abnormality. I'm sorry his RAST test came back negative, but obviously he is still allergic. Why put him through something like this again if he still can't touch the stuff??? Thank you in advance for any advice!/p

Posted on: Tue, 03/13/2001 - 7:02am
PattyR's picture
Joined: 04/12/2002 - 09:00

Wow! I am just shocked that they put your son through a test like that and I am very sorry for you. Don't blame yourself, we put trust in our Drs. until they disappoint us. You will be very happy that you found this site as it is where you will learn the most about this allergy.
First of all, I would find another allergist immediately. I have never heard of a Dr. doing what yours did. To top it off, the fact that the Dr. didn't even check your son's condition is unbelievable to me! Anytime, more than one body system is involved it is considered an anaphylactic reaction. This certainly sounds like the case with your son.
I also learned the hard way to trust my own instincts over the advice of Drs. We do know our children best. My son had an anaphylactic reaction to a skin test.
Do you carry an epipen for you child? If not, you do need to get a prescription. Again, I am so sorry that you and your son had to go through this experience. I don't know why your son's RAST comes back negative and don't know why they discount the skin test but if I were you, I would not retest.
Welcome to the boards.

Posted on: Tue, 03/13/2001 - 7:39am
BENSMOM's picture
Joined: 05/20/2000 - 09:00

I'm sorry you and your son had such an awful experience. It is hard to speak up to your doctor, but with practice it gets easier. The next time your doctor wants to do an oral challenge is in 3 years. You don't even need to confront him about it right now if you don't want to. If you do want to discuss it now, I would say that you don't plan on having him challenged again until he has a negative skin test. I have read (somewhere on here from a FAAN conference) that a skin test can take up to 7 years to clear after an allergy has been outgrown, but it is up to you to decide whether or not to have another oral challenge. If your doctor gives you a hard time about your decision, I would consider finding a doctor you can talk to more easily. Or, if you like him, you can just stick to your guns and tell him you don't feel comfortable with it. A lot can happen in 3 years. Perhaps they will have a cure, or at least some better testing.
I am pretty much in the habit of questioning everything doctors tell me, from vaccines, to prescriptions, to blood tests, etc. It gets easier, and I happen to have a pediatrician that doesn't get offended. I have not had as much luck finding an allergist I like. Good luck.

Posted on: Tue, 03/13/2001 - 9:05am
SusanMO's picture
Joined: 03/13/2001 - 09:00

Hi Patty and BensMom! Thank you so much for your responses. I guess I just needed to hear someone else say what I already knew. I also don't think I made myself clear in reference to doing the food tolerance test again. The only way I would consider doing another ingestion challenge is if my son was able to have peanuts/peanut butter placed on his skin without any reaction. When he had his reaction in the hospital, it seems as soon as the hives came, the test was considered valid, but not when he vomited. Given my sons history, I don't want to be splitting hairs again over what is a vomit and what is not. And are both right....I need to follow my instincts on this one. Thank you so much!

Posted on: Wed, 03/14/2001 - 3:11am
CherylB's picture
Joined: 12/06/2000 - 09:00

Boy, that stinks. One thing I've learned is to trust your own instinct. I'm still relatively new to my son being PA but I knew he had problems long before we ever tested him or even gave him peanuts of any kind. He had eczema problems that my Dr. told me was caused by me and my husband not treating it well enough to clear up. I know in my heart I did everything I could. when my doctor finally listened to me and refered my son to an allergist I was proven right! I was doing everything I knew to do but he had allergies to several foods and environmental allergens that was constantly irritating him. Now he's fine and we have all of his allergies under control. (or at least as much control as humanly possible) I got a new pediatrician since I had such a hard time with my last one. Dr.s don't know as much about your child as you do. They are there for direction. You are the driver.

Posted on: Wed, 03/14/2001 - 9:12am
anonymous's picture
Joined: 05/28/2009 - 16:42

Susan - there are lots of threads on the RAST test (darn search function isn't available right now to find them, though!). I seem to recall reading that both RAST and skin tests are NOT infallible. While the RAST is slightly more reliable than the skin test, neither test is more than approximately 75% (at the most) accurate. I also recall there are more false positives than false negatives, but false negatives DO exist, which is what your son's RAST may indicate.
Once the search function is back, you will be able to retrieve lots of pertinent information on RASTs.
Also, I completely agree with you! How can the doctor say a food challenge is in order when he can't even tolerate the peanut sample on his skin!! That's just ludricrous - I don't know what he could be thinking! It's SO hard to stand up to doctors - especially when you get one who's eyes glaze over when you're trying to explain to him that you have found new information on your own.
Good luck finding a new allergist (if that is your intention). Allergist DO exist, who are willing to work with you and not steamroll over your wishes. Keep us posted! [img][/img]

Posted on: Wed, 03/14/2001 - 9:35am
marla's picture
Joined: 01/15/2001 - 09:00

I agree with what everyone has said. Personally, though, I would never go back to this allergist again, not even in 3 years. The way that you and your son were treated verged on malpractice. It is hard to find a good allergist (and I don't know one myself--our ex-allergist, supposedly one of the best in the Boston area, is up on murder charges for killing his wife). Mainly you have to trust your instincts...

Posted on: Fri, 03/16/2001 - 5:09am
4jesters's picture
Joined: 03/16/2001 - 09:00

Yes, it is possible to have the RASST come back "False Negative." I was told if it comes back positive, it's definitely positive. With my son, some things only came back 2+, and the Dr. told me that doesn't mean he can't eat it! Yea, right! The foods I had him tested for he NEVER came in contact with! He was only 1 yurs. old! Anything that comes up + is strictly avoided.
He is undergoing BioSET, but that's another story, another time! He's doing great! I'll have to start a thread when I have free time to respond!!!

Posted on: Fri, 03/16/2001 - 6:20am
SusanMO's picture
Joined: 03/13/2001 - 09:00

Thanks to everyone who has responded! Your insight as well as your own experiences has been very helpful.

Posted on: Fri, 03/16/2001 - 1:30pm
KevinsMom's picture
Joined: 03/01/2001 - 09:00

Susan, I can't believe how alike our situations are. My son with PA is also 5. He failed a food challenge last year. He has a similar backgound also, the only reaction being his first. His skin test and rast test were both negative, which lead to the challenge.
It was an incredibly scary thing for DH and I, not to mention Kevin. The only "good" thing we took away from it was that Kevin now knows what a PA reaction may feel like. He was too young at his first and only reaction to remember.
We have been very lucky with our allergist. He is incredibly supportive and knowledgeable about food allergies and living with food allergies. I don't know how to find an allergist, I would recommend trying new doctors until you find one in your area that you can work with.
As far as future food challenges, I'm torn. The allergist thinks we might be able to do one in a few years, depending on his skin and rast tests. This year the weal from his skin test was so big that the allergist said he would not do a rast test, he almost guaranteed that it would come back very high.
DH and I agree that it will be a few years at least before we put Kevin through this again.

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