Reaction free? Really allergic?

Posted on: Mon, 02/04/2002 - 5:01am
ConcernedMom's picture
Joined: 01/31/2001 - 09:00

I was at the allergist today to have my son tested for food allergies (he was tested for milk, fish, soy and peanuts - thank goodness all were negative.) So while I was there, I inquired about having my daughter retested. She had her first reaction at 16 months I told him, she skin tested positive for peanuts at age 2, and is now 5 and has not had a reaction since. This is what he told me, and I was very surprised!

He said he would not do another skin test on her. He said a skin test, or even a blood test, could show a sensitivity to peanuts, but she may not really be allergic to them. He said skin prick tests show false positives 60% of the time! The only way to know if my daughter was really allergic and to what degree would be to do an oral challenge (in a hospital setting, of course, with crash cart available) My husband and I freaked when we heard about the crash cart, but he told us in 13 years of doing oral challenges, he has only had 3 go into anaphalytic shock. So we are considering doing the oral challenge.

So, is my daughter really allergic? Has anyone else been told this by their allergist? He told us that if it were his child, he would do the oral challenge. To me, that says a lot.

Posted on: Mon, 02/04/2002 - 7:43am
BENSMOM's picture
Joined: 05/20/2000 - 09:00

I've been told the same thing about skin prick tests and I believe blood tests can lie too. But, I think I would get a CAP RAST before doing and oral challenge just to see if the number is low. If it's high, it might not tell you much, but if it's low, at least you can feel that much more confident. For the CAP RAST there is supposedly a correlation between the score and the *likelihood* of a reaction. I've considered getting my son challenged bcs he's never reacted, but his CAP RAST was over 100 so I don't think I could even find an allergist willing to do it if I wanted to.
Also, I believe you've mentioned that because your daughter has multiple food allergies, you are extremely vigilant and she never eats anything you haven't made at home. Fortunately, lots of pa kids go for years on end with no reaction, but unfortunately, it doesn't mean they're no longer allergic. Good luck with your decision and keep us posted.

Posted on: Mon, 02/04/2002 - 7:59am
anonymous's picture
Joined: 05/28/2009 - 16:42

To add another allergist's opinion on the matter... my son's allergist recently saw him and refused to do another blood test for me. She said his past reactions (at 15 and 18 months of age) and past test results (at 18 months and 3 years of age) show her that he will never outgrow his PA. He is 5 years old.
I, personally, wouldn't want to do an oral challenge. JMO.
Good luck and take care,

Posted on: Mon, 02/04/2002 - 9:53am
smack's picture
Joined: 11/14/2001 - 09:00

Concerned Mom,
I'm so glad you posted this. I believe my allergist and your allergist may be from the same belief system being that "Are they really allergic?", and the only true test is the Oral challenge.
After reading a little bit on this though, I found out some kids that actually get through the passing the challenge and then having a anaphylactic reaction to eating it 2 weeks after.
I'm not so sure what to do yet, but when I sit down to talk this over with the allergist before I would even consider it now, I will want to know in the Food challenges he has given,
How many kids had no reactions whatsoever.
What were there Cap Rast scores .
How many reactions to peanuts or nuts did they have before this.
What were there reactions.
How many years with no reaction.
How many Cap Rast tests were done before they decided on a Food challenge.
Why some allergists wouldn't even consider doing a "Food Challenge" unless Cap Rast scores are lower than a 5 and why he does.
Just some questions I have now before I decide, and I know you can read and listen and be totally paranoid after but I know the truth lies in people's own experiences with these Challenges because they are somewhat controversial.

Posted on: Mon, 02/04/2002 - 12:39pm
Rae's picture
Joined: 03/28/2000 - 09:00

My youngest daughter, Heidi, tested a 2 to a skin test at age 3. She was eating peanut products at the time - not often due to older sister's PA - and had no "reactions". She did have eczema problems, but she also had many other allergies that were 4+. She recently, at age 5, had a severe reaction to a bite of cookie with peanut butter chips at her school party. We had to rush her to the Dr. (luckily close by). She was kept away from peanut products, although had been known to get some "may contain", during the 3 years between testing and her reaction. Good Luck on your decision.

Posted on: Mon, 02/04/2002 - 1:47pm
Carefulmom's picture
Joined: 01/03/2002 - 09:00

I also would not do the oral challenge without a CAP-RAST first. Your allergist said skin tests have a false positive rate of 60%, mine says 50%, so that is almost the same. However, mine says a CAPRAST is very predictive of liklihood and severity of a reaction, and personally, I think it is rather cavalier of your allergist to want to do a challenge without a CAP RAST. I`m not sure our allergist would do a food challenge anyhow; for us it is not an option because my daughter`s CAP RAST is 1804. I can`t figure out why yours would not do a CAP RAST and go straight to a food challenge. I think few allergists would do what yours is doing.

Posted on: Mon, 02/04/2002 - 2:36pm
ConcernedMom's picture
Joined: 01/31/2001 - 09:00

Thanks for everyone's input. I need to set the record straight on a few comments, though. BENSMOM mentioned multiple food allergies, but my daughter only has the allergy to peanuts. And I must admit I am not very vigilant about what my daughter eats, so she has been reaction free because either she's lucky, or because she isn't very allergic, or maybe not allergic at all. At least that's what I think.
Now you all probably think I am such a bad mother for not being extremely vigilant. Before I knew about this website, I knew to keep my daughter away from the obvious, peanut butter sandwiches and cookies, and candies such as Reese's and Snickers. I even knew that plain M&M's were no nos, and that picking peanuts out of chex mix was not safe enough for my daughter. But I never worried about cereals, ice creams without nuts, plain chocolates, refrigerated cookie doughs, or even restaurants until I read these discussion boards. Now I still keep her away from the obvious, but I read labels and if it doesn't mention anything about peanuts, or may contain, or made in plant with peanuts, I let her have it. I don't call manufacturers, I don't talk with the chef at restuarants to determine what is safe for my daughter, and I even let her play in McDonald's playland because she loves it so much.
My daughter's only reaction was at 16 months. She tested positive to a skin prick test at 2, but I don't know what her score was at that time. I think from reading the posts here I would like to get a CAP RAST test before I do an oral challenge. But this is my thinking on it. Maybe she has not outgrown her allergy. But I don't think she is highly sensitive to it. An oral challenge would give me an indication as to how allergic she is. Then when she starts kindergarten, I'll know how much protection she needs in the classroom. Can other kids bring in may contain foods, could she sit next to someone eating a PB&J (she already has, so I think she could), or should her classroom be totally peanut-free? I don't want it to go that far if it doesn't need to be. I think if by some miracle my daughter passed the oral challenge, I don't think I would start giving her PB&J or Reese cups, but it would be nice not to have to worry and wonder.
I know there are people here whose children have had near death reactions. I thank God I have not had this happen (at least not yet). I still pray that there is a cure soon, maybe my daughter will need it, maybe not. I will do some more research before we actually do an oral challenge. Thanks again for your input!

Posted on: Mon, 02/04/2002 - 11:42pm
Joanne's picture
Joined: 02/22/1999 - 09:00

You may wish to have a CAP Rast test done first. I personally would only do an oral challenge in a controlled hospital setting. In one of the FAAN newsletters last year they reported on a study recommending that a child with 2-3 years of being reaction free AND a CAP Rast score between .5kUa/L and 10kUa/L should be food challenged. In the Journal of Allergy and Clinical Immunology vol 105/No. 1 a study showed that 71% of patients with less than 2kUa/L had a negative oral challenge.

Posted on: Tue, 02/05/2002 - 12:34am
Carefulmom's picture
Joined: 01/03/2002 - 09:00

Just want to point out that reactions can vary from exposure to exposure, so even one negative oral challenge does not mean your daughter will not have a reaction on a future exposure. I suppose with a very low CAP-Rast though, at least you could let your guard down, about peanut free tables, etc.

Posted on: Tue, 02/05/2002 - 3:27am
booandbrimom's picture
Joined: 08/23/2000 - 09:00

Just curious...does anyone have any experiences with a child outgrowing a food allergy? I know most of us are here because our kids are PA, but perhaps another allergen?
I was always under the impression that once they outgrew it, it was done! I'm surprised and dismayed to hear that reactions can happen even after a child has passed a food challenge.
Do kids continue to get less sensitive to foods like milk as they get older? As they have more exposures? We keep hoping our son will outgrow at least some of his food allergies but it would scare me to suddenly have a bad reaction after he's been eating something.

Posted on: Tue, 02/05/2002 - 2:41pm
ConcernedMom's picture
Joined: 01/31/2001 - 09:00

I definitely will insist on my daughter getting a CAP RAST test before we will consider an oral challenge. Thanks for all the information and insight!
Do you think anyone who did outgrow PA would ever come back on to share their experience? Or are they so happy that they don't have to worry about PA that they never come back to these discussion boards, or maybe they feel guilty about their good fortune and wouldn't want to make the rest of us feel bad that we still need to come here...

Posted on: Wed, 02/06/2002 - 12:09am
smack's picture
Joined: 11/14/2001 - 09:00

Concerned Mom,
Good Question,
I think everyone would react differently.
Some would feel quilty even talking on this forum because they are not dealing with it anymore.
Some have so much information to give and are willing to share what they know, regardless if they are living with this allergy or not.
Maybe it depends on how long you have lived with the allergy?
I myself would probably not talk so much on these forums anymore but would support organizations that are funding research and change for better labelling laws.
P.S.-I would for sure tell everyone here if my son outgrew his allergy. That gives everyone hope, without hope what is there?
[This message has been edited by smack (edited February 06, 2002).]

Posted on: Wed, 02/06/2002 - 2:20am
Carefulmom's picture
Joined: 01/03/2002 - 09:00

Concerned mom, here is my input about people whose children have outgrown PA coming back to these boards. My daughter who is also PA was born with a diaphragmatic hernia. She had a hole in her diaphragm, her intestines and kidney were in her chest where her lung was supposed to be and her lung was malformed. She had surgery when she was 26 hours old. This birth defect has a 50% mortality rate. Of the 50% that live, 80% of them have severe sequellae, such as blindness, mental retardation, cerabral palsy. Only 10% of kids born with a diaphragmatic hernia live a normal life. After 3 years of endless doctor visits, physical therapy, and occupational therapy, my daughter is now completely fine other than PA and other food allergies and moderate persistent asthma. We were in the lucky 10%. Her teachers and her friends have no idea of what is in her past. There is no sign that any of this ever happened other than a surgical scar and a chest tube scar. About a year ago, I heard about an organization for support of parents of children with diaphragmatic hernias. Although my daughter was then fine, I joined and go to their website every now and then. When I read their stories, I cry and remember how it was, and I am SO thankful that my daughter is okay. Going to that website really makes me realize how lucky I am. I don`t write in, having been through what those parents have been through, I just can`t write in---I feel like it would make their situation more difficult for them. So by the same token, PA is so horrible to live with (I`m not referring to reading labels and having to ask people not to eat Snickers, but more about sending your child to school and knowing your child could die), and if I ever get lucky enough that my child outgrows PA, I`m sure I will still come to these boards from time to time and be thankful.
By the way, I do know someone whose child outgrew PA. She had no other food allergies, and outgrew it somewhere around age 8. The parents had been extrememly vigilant about any exposure at all. Class was peanut free, no may contains, and kids even had to wash their hands when they arrived in the morning. He really doesn`t know if that is why his child outgrew it, or if it was just luck. I know he also reads these boards sometimes.
[This message has been edited by Carefulmom (edited February 06, 2002).]

Posted on: Wed, 02/06/2002 - 3:26am
MyKidsMom's picture
Joined: 02/06/2002 - 09:00

I know of two children who outgrew their PA. Both had initial reactions of facial swelling and hives at around two years of age. They both had follow-up skin and blood testing, one at age four and one at age eight which came back negative. Both were orally challenged with peanut and both passed. Both continue to eat peanuts/peanut butter to this day. Our allergist told us that whenever she has a child who passes an oral challenge, she strongly recommends the child continue to consume peanuts on a regular basis to ensure that it was not an isolated incident and also to ensure their body remains de-sensitized. She also mentioned that the children that outgrew their allergies were between the ages of 8 and 10 and had positive skin tests but low CAP-Rast scores. I personally feel that in order to give my child the best possible chance of outgrowing the allergy, we should remain extremely vigilant about any exposure and have our child retested yearly to follow his CAP-Rast scores. By the way, our allergist also told us that there is no such thing as a "mild" peanut allery, only mild reactions as each reaction is unpredictable and potentially life-threatening.

Posted on: Wed, 02/06/2002 - 12:13pm
ConcernedMom's picture
Joined: 01/31/2001 - 09:00

Carefulmom - what an amazing story about your daughter overcoming the odds of diaphragmatic hernia. I'm so happy that she was one of the lucky ones. I think there are so many medical breakthroughs these days that make us all live happier, healthier lives. I'm sure your family did a lot to help your daughter get through all the operations and therapy, so you should be commended as well.
With all the medical breakthroughs, I do believe there will one day be a cure for PA (for those of us who do not outgrow it). I remember growing up hearing of how deadly cancer was, and now people are being cured of it everyday! I have faith that the same thing will happen with life threatening food allergies.

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