Please help! How allergic is my daughter?

Posted on: Sun, 01/26/2003 - 8:17am
Nicole1401's picture
Joined: 12/27/2002 - 09:00

As I have seen others of you complain about, I too get conflicting answers from my dd doctors. After having a reaction to her first PBJ sandwich, her first allergist did a RAST blood test. She came back with peanuts as a "3.36" and "623" which the scales list as high and very high respectively. The doctor called these results "impressive" but not extremely so and told me not to give her any peanuts in any form, but that may contains are OK and that peanut oil may be OK. He was reluctant to answer any other questions so we sought out another allegist who did the skin test. My dd was a "class 4 after 5 minutes." She was willing to answer my questions but was extreme in the other direction and her advice was basically to never let my dd leave the house but if she must, then she should sit on my lap the whole time. Many of my questions regarding how careful we need to be went unanswered because this dr refused to admit that there are different levels of peanut allergy. The dr said that it can't get worse because there is no worse because all peanut allergies are the same. I don't know if she was jsut trying to scare me into being careful (I didn't need to be scared any further than I am.) because from reading this board and talking to adults with the allergy, I definitely see different levels of cautiousness and I have seen people say that their child's allergy has worsened. I am sorry this has become so long but I am very frustrated. Can anyone tell me what these numbers mean? Do I need to fear residue left on the playground? Can she eat "may contains" like the first doctor said? Any input would be appreciated as I have already decided that you guys know much more than both of those doctors combined.

Posted on: Sun, 01/26/2003 - 8:50am
joeybeth's picture
Joined: 09/01/2006 - 09:00 got doctors at each end of the spectrum, it seems. of the two, i'd prefer the advice of the second. however, we have two PA girls that we know to be (from testing and past experience) highly sensitive to peanuts in any form and residue and airborne also. we do not live in a bubble but we certainly do not allow may-contains or peanut oil and we are as careful as we know to be. one of our PA girls is schoolage (1st grade) and she does attend public school which is not very strict with it's policy (in fact, there is no policy) on PA. we are doing okay, so far, even though we aren't really happy with the degree of concern the school system shows. you will figure out how to handle things as you go along. one thing you will find, from my experience anyhow, is that one person's solution may not work for you. everyone's situation is a little different and it seems like many PA people have different levels of sensitivity. all levels should be taken very seriously, in my opinion, though. you never know when a reaction might differ from another. no matter what info you get, i would avoid may-contains and educate yourself as much as you can. my children did eat may-contains for a year (before we got serious about tightening up and reducing our risk factors) and no major harm was done. there were minor reactions that we can not actually attribute to peanuts in the products but, who knows. since our kids at the time were also allergic to egg, wheat and soy, we always thought the swelling of the lips or facial rash was from something other than peanut contamination in the products. it very well could have been peanuts, looking back now. some people think multiple exposures can worsen the allergy as a whole. so...better safe than sorry is our motto. plus, i think it gives my girls an idea of how serious their allergy is if we teach them to be extremely careful. i don't want them getting too relaxed about it. heaven knows they are faced with enough people that do not take it seriously. i want them to be on their toes and able to protect themselves if necessary. they have had some huge reactions in the past(one of the girls in particular) and we have seen first hand how bad this allergy can be at times. the problem for us is that we never know which exposure is going to cause facial swelling and then stop and which is going to proceed on to swelling of the airway and/or other problems that aren't apparent by looking (like blood pressure). this site is a great source of info. every time i'm on here i learn a little more and i sometimes alter the way i do things if i am moved to do so. unfortunately, i'm not as educated about PA as i even need to be so i hate to tell you what i think you should do. reading every bit of info you can get your hands on, finding a good pediatric allergist (who gives a rip and is interested in food allergies and anaphylaxis) and getting into discussions like this would be a good start. at least you are aware enough at this point to question your doctors. we, unfortunately, didn't question our first doctors and they were of no use. two of them didn't even recommend epinephrin and some, like yours, said may contains would be fine. i feel very strongly that may-contains and peanut oil can (and at some point will) be dangerous. we feel much more comfortable avoiding those. good luck. i've been where you are and every year, thankfully, it does get a little better. we learn a little more and the girls get a little older so we feel they are learning right along with us. they do learn to look out for themselves some and become a big help to mom and dad. joey

Posted on: Sun, 01/26/2003 - 8:58am
katiee's picture
Joined: 05/09/2001 - 09:00

Hi Nicole,
One of the most difficult things about this allergy is the conflicting information we all seem to get.
One of the best ways to wade through the muck, so to speak, is to educate ourselves as much as possible because the sad fact is, it's up to us.
My allergists way of explaining things was to hand me a stack of reading material and hand me off to his nurse for epi-pen training. I have to say it was a little more than overwhelming at the time. Since then I have forund this site and through various sources I have found my comfort zone with regard to PA. Rather than tell you what to do, I'm attaching some links to some great articles at the Calgary Allergy Network.. They helped me alot in the begining.
The hardest part about this allergy is that you never know how a PA individual will react at any given time. This is why all peanut allergies are considered "potentially" anaphylactic. My PA son has had two anaphylactic reactions, you learn more as time goes by. For myself, I do not allow "may contains" I have read material that stated that a "may contain" has a 1 in 5 chance of actually containing peanut. To me that's too much like russian roulette but like I said, wer all have different cvomfort levels.
You did not mention if your allergist had given you a prescription for epi-pens? If not, given you test results, you need another allergist who does "get it". We do not always have enough time to make it to a hospital in time.
Best of luck to you, there is alot of great information here.
Take care,
Katiee (Wade's mom)

Posted on: Sun, 01/26/2003 - 9:08am
cynde's picture
Joined: 12/10/2002 - 09:00

I only want to echo what katiee and joeybeth said, consider all peanut allergies anaphylactic because you never know when it will be. I hope you have a couple of epipens and know how to use them. Good luck.

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