Negative Cap Rast Be Aware!!!

Posted on: Tue, 07/08/2003 - 1:30pm
nikky's picture
Joined: 11/14/2000 - 09:00

My four year old PA son just skin and cap rast tested negative for peanut. The doctor (at Childrens Memorial Hospital In Chicago) told me to go home and feed my son peanuts. I had previously been told by a doctor at Rush Presbyterian St. Lukes in Chicago that because my son had only been exposed through the breast milk as a baby, his test would most likely come back negative because it had been so long since he had been exposed. I was told by this doctor that a food challenge would be the only true way to test if he had actually outgrown the allergy. I was shocked that the Children's doctor told me to just try the peanuts at home. I told her what the Rush doctor had said and she said that she didn't think that was true. My husband and I agreed that feeding him peanuts at home was way to risky and decided to just go on avoiding them for now. My infant son was also skin tested and cap rast tested. He had reacted badly to cows milk through my breast milk. His tests also came back negative. They told me to keep avoiding cows milk in my diet and his until he is one. A couple of days after we received the cap rast results, I accidentally ate a biscuit with buttermilk in it. My husband bought the wrong kind and didn't notice it when he made them. We ate them for dinner. The next morning the baby had a nasty rash. I immediately started thinking about what I ate the day before and my husband realized that he had bought the wrong biscuits. My first reaction was.... they just told me that he tested negative to milk and had outgrown the allergy. But he obviously reacted only a few days later!!!! This means that he WAS allergic even though he tested negative. It appears that the Rush doctor was correct in saying that if you haven't been exposed in a long time that the tests would likely come back negative. I can only assume that there is a real possibilty that my PA son is still PA even though he tested negative. Now I for sure will keep him from peanuts unless we someday decide to do a food challenge to know for sure. Also, just to let you know, the Children's doctor said that in her practice, not very many children had outgrown their peanut allergy. She had one girl recently that tested negative and then reacted again after she started eating the peanuts. She still felt that it would be rare to react again if you had outgrown it, and that is why she told me to go home and give him peanuts. Sorry this is so long. I just thougt some of you might find this interesting to know in case your child ever tests negative. Anyone who has had any experience with this please let me know. Thanks!!!!!!!!

Posted on: Tue, 07/08/2003 - 10:33pm
BS312's picture
Joined: 09/05/2001 - 09:00

Nikky- We had a similar experience. My DD tested negative to peanut by cap-rast at age 3 3/4. Her allergist thought there was a very good chance she had outgrown her allergy. Her only exposure to peanut had been in utero and via breast milk prior to 7 months old. She had skin and cap-rast tested positive to peanut in the past but had never actually eaten it. The allergist challenged her by feeding her a teaspoon of peanut butter in his office. I never would have let him do it if I had known what I know now! DD was 4. SHE ALMOST DIED. She had to get 4 or 5 shots of epinephrine. I am sure she would have died if we had given her peanut at home. In our case, the negative cap-rast was probably the result of a lab error. Our new allergist told us later that the lab we had used was having trouble with their computers around the time DD's test was done. So we almost killed my DD based on false results. IMHO, your doctor is committing malpractice by telling you to challenge your child at home. Also, I would NEVER consider doing a food challenge without at least once repeating a negative cap-rast, just to be sure the result was correct and a mistake wasn't made. YOUR CHILD'S LIFE IS AT STAKE. (I am not yelling at you. You can understand that I feel very strongly about this.) Doctors don't always realize that they can kill our children with inappropriate food challenges.

Posted on: Wed, 07/09/2003 - 1:13am
SpudBerry's picture
Joined: 07/23/2002 - 09:00

I think this doctor's behavior should be reported to his superiors. Who knows the entire place might be misguided & not think anything of it. But hopefully some one will see how dangerous his/her attitude might have been, and then as a group, the doctors could then decide what the PROPER protocol should be.
Mom to 3 year old twins Ben & Mike - one PA & the other not.
Stay Informed And Peanut Free!

Posted on: Wed, 07/09/2003 - 1:54am
river's picture
Joined: 07/15/1999 - 09:00

Thank you so much nikky for letting us know about this. This information could be a real life saver.
I hope there are allergists who secretly read this site, because they'd sure learn a lot.

Posted on: Wed, 07/09/2003 - 12:58pm
Yonit's picture
Joined: 06/24/2002 - 09:00

nikky - how about a skin prick test? Our allergist (Chicago area, too, but not at Children's) always insisted that a NEGATIVE skin prick test is very reliable. So, perhaps, if the skin test is negative, then you'd feel okay about an in-office supervised challenge. I agree that the doctor's advice was scary and inappropriate.
[This message has been edited by Yonit (edited July 09, 2003).]

Posted on: Wed, 07/09/2003 - 1:13pm
nikky's picture
Joined: 11/14/2000 - 09:00

WOW!!!! I am SO sorry that you had to go through that with your child. I can only imagine what that was like. I think I would be to scared to do the in office challenge at this point. I'm not very confident that he outgrew the allergy. He was skin prick tested and that came out negative also. Interestingly, he did have a rast (not Cap) a couple of months ago at Rush that was also negative. That is why I went to Childrens to get the cap rast. I heard it was more reliable. But it obviously was wrong about the baby and his milk allergy. His skin test and his cap rast were negative and the doctor said that he was no longer allergic. Then a couple days later he had the reaction to milk. Go figure. That is why I don't trust the negative results for my PA son. Have any of your allergists told you that the blood test could come back negative if the child had not had any exposure for a really long time?? My son has not been exposed to peanut since infancy in the breast milk. I appreciate all of the replys. This is so hard and confusing.

Posted on: Wed, 07/09/2003 - 1:26pm
Renee111064's picture
Joined: 07/05/2001 - 09:00

Nikky, I too would like to thank you. We are all "human" and make mistakes, but when you put your trust in the "doctor" we hope for the best.
Thankfully you did not try the peanut test and that you followed you gut instincts. I think a mother's intuition is usually right.
best wishes,

Posted on: Fri, 07/11/2003 - 1:19pm
san103's picture
Joined: 03/27/2000 - 09:00

This is interesting because some of this information is consistent with our experience with our son who is almost 4 years old. At 6 months old he tested positive for peanuts (CAP RAST and skin test). A month later he tested positive for walnuts and pecans. He was exposed to these things through breastmilk -- no ingestion. Over the last three years his peanut CAP RASTs have decreased to 0 (two very low scores, two negative scores) but his nut scores stayed at very moderate-high levels. We plan to peanut challenge him when he is five -- but at a hospital only!
Testing is interesting...our son never tested positive for soy...but he vomited violently on the three occassions he had it. Now he can tolerate soy.

Posted on: Mon, 07/14/2003 - 12:30am
BONNY's picture
Joined: 06/20/2001 - 09:00

I also went to childrens memorial for my pa son and tree nut daughter. We skin tested positive for fish mix, and the other positive for shellfish mix, so we had the cap rast done and broke it down to shrimp, cod, lobster and so on, everything came back zero except I had her test pumpkin for my daughter which came back a class2. I also had a woman doctor. She told me I could test at home for the things that came back negative. I was at the fann conference and talked to a doctor who works with Dr. sampson and he said we need further testing and do not oral challange at home. Needless to say we will never be going back to childrens, in my opinoin she just was not knowledgable enough about food allergy. Nikky let me know if you find a good allergist since we seem to be in the same vicinity,

Posted on: Mon, 07/14/2003 - 7:56am
nikky's picture
Joined: 11/14/2000 - 09:00

I have since spoken to another doctor at childrens. This time it was a male. I think he was just a fellow but he spoke with one of the assistants to the woman. They said they stand by their decision to test at home because they believe that the negative cap rast gives you a 99% chance of not reacting. I told him I would never do it at home. He said he would talk to the woman when she gets back from vacation and ask if an office challenge would be allowable for me.
At this point I will not even consider that. I don't want to confuse my son. If he reacted I don't know how he could trust me again. My husband and I feel it should be his decision when he gets older and can understand better if he wants to do an in office challenge.
About the other doctor issue. I do know of the one group at Rush. They were the ones on tv back in april talking about the shots for PA. They would have done an in office challenge. In fact they told me he would actually even need two in office challenges. They felt that since it had been so long since he had been exposed, his first ingestion might not cause a reaction and that it might be the second ingestion. Thats pretty conservative I think. A lot safer than what childrens suggested. You can email me and I'll give you the name and number.

Posted on: Mon, 07/14/2003 - 11:21pm
becca's picture
Joined: 05/22/2001 - 09:00

FWIW, my dd's allergist said he would not even bother retesting her until age 5, even though her last numbers went from a 10 to a 1.13 in a year. He said with a known sensetivity, he would never consider a peanut challenge until age 5(and after negative skin and Cap RAST), at least, when the immune system is more mature.
He concurs with the skin tesy being the more sensetive, but does not do it with peanut until there is a negative blood test, as it would be an exposure. becca

Posted on: Mon, 07/14/2003 - 11:33pm
Carefulmom's picture
Joined: 01/03/2002 - 09:00

Yonit, a negative skin test is not always reliable. Our allergist told us that a negative skin test is correct 97% of the time, and 3% of the time it is incorrect. My dd was in the 3%. She was skin tested for egg at age 2 1/2, skin tested negative, 3 days later I gave her egg for the first time, and I had to use the Epi. She was skin tested again a few weeks after that, and it was positive.

Posted on: Tue, 07/15/2003 - 10:22am
Anonymous's picture
Anonymous (not verified)

I don't have long to reply to this post, but I do want to tell you that we went through this same situation last year. Son, who was exposed many times and reacted anaphylacticly, tested negative on the CAP RAST to peanuts. They wanted to do a food challenge at the doctor's office. It took months before my son (then 6) to be willing to undergo it. Anyway, a very long story made short, he reacted severly to the food challenge. They insisted that he could NOT be allergic still. About a month after that he had another reaction. Basically, I say trust your instincts...those tests are not always accurate.

Posted on: Wed, 07/16/2003 - 1:51am
BONNY's picture
Joined: 06/20/2001 - 09:00

I will keep the rush group in mind thanks! I also have a three year old who has yet to visit an allergist so we will be going sometime before preschool. The foods we had tested on skin and cap rast are things we have never eaten before so I am wary of that. I am just not sure if they would react or not. It has been a year and I still could'nt muster up what was needed to do a home challange. At this point we are probably going to wait anouther year since that is when my youngest will be ready for preschool and we need to know what he is allergic to. Ya, know I have had skin testing come back positive that I know they are not allergic to and even on two occasions had a negative result on a Tree nut with a known severe reaction. To this point the cap rast has been true, but as of yet not done a food challange to prove it wrong.
Thanks Nikky I'll keep in touch

Posted on: Mon, 07/21/2003 - 6:37pm
wendysco's picture
Joined: 05/03/2003 - 09:00

raising for e-mom

Posted on: Mon, 07/21/2003 - 10:58pm
e-mom's picture
Joined: 04/23/2000 - 09:00

A BIG THANKS to Wendysco!!!

Posted on: Wed, 08/27/2003 - 1:29pm
megans mommy's picture
Joined: 08/26/2003 - 09:00

Wow! Glad I found this post. I am new here. Megan was diagnosed with multiple food allergies at 15 months. I suspected PA at 6 months, but was repeatedly told by her ex-pediatrician that it was not possible as allergens are not passed through breastmilk!!!
Megan was only exposed to peanuts through breastmilk and I have never given her any peanut products. I told my husband she was not to have any type of nut until she was tested (I think she also reacted when I ate a handful of walnuts). I finally succeeded in getting her tested. She turned up positive for wheat, fish and peanut. Her allergist was not very concerned about her food allergies (she also reacts to soy, milk, possibly tree nuts & shellfish). He said she was probably outgrowing them now.....just keep doing what you're doing....end of discussion.
I am on the internet alot, researching her allergies/finding recipes for things she can possibly eat. I started finding things on PA, which I didn't know before. The more I read, the more I get this sinking feeling in my stomach. She may outgrow the other allergies, but fish and peanuts are likely to stay it looks like.
I was glad to read of other moms whose babies were only exposed through breastmilk. I will be more wary if she turns up negative the next time they test. I don't know that I'll ever feel comfortable giving her peanuts!

Posted on: Thu, 08/28/2003 - 1:05am
anobstinateone's picture
Joined: 08/26/2003 - 09:00

Had to respond to the exposure only through breastmilk. This is how my dd got exposed. She never had peanuts/peanut products until she was two...and she reacted the first time. It wasn't until she was 3 or so that the study came out saying exposure to peanut breastmilk was a likely cause that I put two and two together. Glad to see I'm not alone. I avoided peanuts with my second child, and am avoiding them now. [img][/img]
Mom to:
Nina 1*31*98 - allergy and asthma queen
Jude 10*01*01 - asthma boy, but no allergies!
Baby W 2*07*04 - healthy baby...or else [img]/peanut/boards/images/%%GRAEMLIN_URL%%/smile.gif[/img]

Posted on: Thu, 08/28/2003 - 4:46am
jtolpin's picture
Joined: 05/28/2003 - 09:00

Just as an aside:
DW is anaphylactic to peanuts, avoids all nuts and shellfish (OAS).
Never ingested peanuts with any of our girls. Never knowingly given PB to any of them (Sara had a PB cracker - no reaction).
Caitlin, at age 2, on her first/only peanut rast was 70.2, not ingesting it at all, or in utero...
We will keep rasting her for other things (including peanuts), but we'll refrain from ever giving her an oral challenge/SPT for peanuts. If mom is ana., we can safely assume we'll be a peanut free house anyways.
Sorry to hear of the negative reactions with the negative tests... Just proves, you can't go by tests alone!
Caitlin 4-17-00 Allergic to Dairy, Egg, Wheat, Bananas, Grapes, Rye, Sesame, Beef and Avoiding Latex and all Nuts
Sara 2-13-98 NKA (avoiding nuts)
Meghan 2-28-03 dx'ed Reflux - Alimentum feeder, Zantac - 1.1ml 2x/day

Posted on: Thu, 08/28/2003 - 10:40am
researching mom's picture
Joined: 07/06/2003 - 09:00

I took my son to a new allergist and asked about the accuracy of cap rast vs skin testing. The allergist said the higher the cap rast score the more likely it would be positive. He said there are very gray areas because someone with a positive cap rast may not be allergic to the food ,yet SOMEONE MAY HAVE A NEGATIVE CAP RAST AND ACTUALLY BE ALLERGIC .He said a negative skin test would be a good indicator that they are not allergic,but that is not true in all cases.Also he said that when a skin prick test is positive it is accurate about two thirds of the time that they really are allergic.

Posted on: Thu, 08/28/2003 - 2:39pm
nikky's picture
Joined: 11/14/2000 - 09:00

raising for mitch's mom

Posted on: Thu, 08/28/2003 - 10:58pm
abbylukesmom's picture
Joined: 08/28/2003 - 09:00

My son is 2 and he IS allergic to milk also. He started out at just 2 week old with HORRIBLE colic. It took about a month for me to figure out that if I ate anything with dairy or even dairy traces-he had horrible belly aches. When he was a year old I weaned him from breastfeeding & gave him a soy based follow up formula. He began with diarrhea, vomiting & belly aches. My husband & I thought we would try giving him some milk to see if he had outgrown the allergy. He SEEMED to do great!! After about a month though he started with chronic broncholitis. He just kept getting worse & worse.....for 6 months all our son did was wheeze, cough, choke, vomit-we couldn't figure it out & neither could our Pediatrician. He was dx'd with RAD He ended up being on four different meds...Pulmicort, albuterol tx's 4 times during the day & at least twice during the night., nasonex, & Zyrtec. None of these helped-he kept getting worse. Then one day my husband & I thought of the milk!! We took all dairy away & on the second night he didn't wake up during the night choking, coughing & vomiting!! It was a miracle!! It took a few months, but we aere able to wean him off ALL of his meds-he now only takes zyrtec as needed! There was one instance when my son was at my parents house shortly after we had discovered this & he ate 2 bites of cottage cheese, he was up during the night for breathing tx's. So it was proven!! Sorry this is so long-but that story helps understand where I'm coming from. My son recently had a few horrible seizures & the only thing I can relate to them is Peanuts! I had him skin tested for food allergies & the milk & peanuts were BOTH NEGATIVE. Last week my son reacted to only a few plain M & M's. (potty training treats). He had hives on every extremity-The allergist gave me a script for an epi pen jr and we are awaiting his RAST test results for milk & peanuts. I can't imagine that it will be negative, but regardless I cannot give him milk or peanut products! So, be careful when you try to reintroduce dairy into your little might react in other ways than the typical!
[This message has been edited by abbylukesmom (edited August 30, 2003).]

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