New and have many questions!!!

Posted on: Sun, 04/29/2007 - 1:07am
anonymous's picture
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Joined: 05/28/2009 - 16:42

My 2Yr old son had an anaphylactic reaction after a tiny crumb of a pistaccio maccaron cookie. He began itchy watery eye, sneezing, then it led up to coughing...((i didn't think much of it beause he was gettting a cold!) then he threw up ...then when he turned around he had golfball size swellings under his eyes bright red. I screamed and my husband and I threw him in the car and headed to either the doctor office or ER. Doc said go there. She gave a shot and nebulizer and gave prescription for epi and prednisone.
I thought everything was fine until I started reading on the internet.....then I brought him to an allergist and he was tested.
Nurse called with results: WHAT DOES THIS MEAN??????
Class 4 for pistaccio and cashew
Class 2 for hazelnut and peanut
Class 1 for Almond.
All other nuts negative ...Does this mean he just hasn't been "sensitized" to them yet??or is it a good indication of not allergic. (I don't even know if he has had many other nuts except for pecans one day.)
Then nurse said doctor recommends he stay away from all tree nut and peanut.

He HAD eaten peanut butter at least a dozen times with no problem that i noticed other than I do remember a red hive above his lip that would go away very quickly if the peanut butter got on his face. Stupid me I thought he was fine (never thought of allergy)and would fed it to him again and again.
Did I ruin his chancs of outgrowing PA ??

If I stop all Peanut won't that give a worse reaction should he come across it again or will it help him outgrow if possible??
He does not have eczema or athsma and NKFA in family.
This is all new to me ....
I did stop all nut proucts immediately and also ..made in a facility and may contain trace amounts ....althought I heard some manufacturs dont say "made in a facilty that al does nuts" so know i won't be able to avoid those unless I call every one!

Posted on: Sun, 04/29/2007 - 2:17am
SydNoahsmom's picture
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Joined: 03/01/2007 - 09:00

Welcome to the boards and sorry to hear of your recent diagnosis and reaction. It is all very scary and overwhelming at first. In time you will learn and develop your own comfort levels. I'll take a stab at some of your questions.
First the 'class' scoring system. This is used to describe results of a cap rast blood test (allergy test). The numeric result of the test is placed into categories between class 0 (non-allergic) and class 6 which is the highest. These classes do not denote the severity of a reaction but the "likelihood" of a reaction occuring- this is how our allergist explained it to us. The following is the scale that is used:
IGE Class 0 <.35 absent or undetectable
1 .35-.70 low level
2 .71-3.5 moderate level
3 3.51-17.5 high level
4 17.6-50 very high level
5 51-100 very high level
6 >100 very high level
I would ask for a copy of the results from your childs doctor... it helps to actually see it in front of you I think.
Strict avoidance is key... I don't think you have ruined a chance of outgrowing. His peanut levels are on the low end which is good- but he can still have an anaphylactic reaction with a very low number. I think in general the lower the number the better the chance of outgrowing. This is my understanding anyone feel free to jump in if you disagree.
Even though there are nuts that he was negative to... avoid them. There is a lot of cross-contamination and cross-sensitivities. Yes he could have tested negative to them because he has never been exposed- try to keep it that way.
Depending on your comfort level you may want to make your home completely peanut/nut free- if you haven't already done this.
It's good that you are not allowing any 'made in facilities'- and just for reference it is not law that this be labeled. It is law that they label the top 8 allergens if contained in the food- not if they are in the same facility or manufactured on the same equipment- it is very frustrating to say the least. You will find brands that you trust- it will take time.
I'm sure the MD told you but you should take the epi with you EVERYWHERE. Wherever your son is there should be epi.
Hope this answers some questions for you. I hope it hasn't confused you more- feel free to ask any questions here- there are people here with invaluable info to share. It will get easier with time. Hang in there!
Kim
------------------
Mom to:
Sydney 4 1/2 Allergic to: Egg, Peanut, Tree Nuts, soy, environmental/seasonal and asthma
Noah 2 1/2 allergic to Penicillin

Posted on: Sun, 04/29/2007 - 10:40am
anonymous's picture
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Joined: 05/28/2009 - 16:42

Quote:Originally posted by SydNoahsmom:
[b]Welcome to the boards and sorry to hear of your recent diagnosis and reaction. It is all very scary and overwhelming at first. In time you will learn and develop your own comfort levels. I'll take a stab at some of your questions.
First the 'class' scoring system. This is used to describe results of a cap rast blood test (allergy test). The numeric result of the test is placed into categories between class 0 (non-allergic) and class 6 which is the highest. These classes do not denote the severity of a reaction but the "likelihood" of a reaction occuring- this is how our allergist explained it to us. The following is the scale that is used:
IGE Class 0 <.35 absent or undetectable
1 .35-.70 low level
2 .71-3.5 moderate level
3 3.51-17.5 high level
4 17.6-50 very high level
5 51-100 very high level
6 >100 very high level
I would ask for a copy of the results from your childs doctor... it helps to actually see it in front of you I think.
Strict avoidance is key... I don't think you have ruined a chance of outgrowing. His peanut levels are on the low end which is good- but he can still have an anaphylactic reaction with a very low number. I think in general the lower the number the better the chance of outgrowing. This is my understanding anyone feel free to jump in if you disagree.
Even though there are nuts that he was negative to... avoid them. There is a lot of cross-contamination and cross-sensitivities. Yes he could have tested negative to them because he has never been exposed- try to keep it that way.
Depending on your comfort level you may want to make your home completely peanut/nut free- if you haven't already done this.
It's good that you are not allowing any 'made in facilities'- and just for reference it is not law that this be labeled. It is law that they label the top 8 allergens if contained in the food- not if they are in the same facility or manufactured on the same equipment- it is very frustrating to say the least. You will find brands that you trust- it will take time.
I'm sure the MD told you but you should take the epi with you EVERYWHERE. Wherever your son is there should be epi.
Hope this answers some questions for you. I hope it hasn't confused you more- feel free to ask any questions here- there are people here with invaluable info to share. It will get easier with time. Hang in there!
Kim
[/b]
Thanks for your reply. It really helped. It's all very overwhelming right now and although I have implimented a no nut diet for my son....I really think I'm in denial about the whole thing. The more I read the more scared I become. The thought of worrying about my son having a reaction every day for the rest of my life is scary to say the least.
I don't know how everyone does it...I guess I will figure it out. Thank goodness I found this board!
Thanks,
Sue...yes, I take the epi everywhere...it took some getting used to!

Posted on: Sun, 04/29/2007 - 10:10pm
SydNoahsmom's picture
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Joined: 03/01/2007 - 09:00

I think everyone goes through the denial stage at first. You will definitely go through different stages of adjusting to this- I look back at some things I've done and I think that I'm crazy. When you have time, and you are ready, go through old posts here- you will learn a lot. However you may want to limit how much you read at first because it is so overwhelming.
We've been dealing with this allergy for 2 years now. For the most part we deal well with it and then every once and a while you have one of those days where you break down. Looking back I can see we were very ignorant and naive in the beginning.
You may want to get a couple of books to educate yourself and your family. "The Peanut Allergy Answer Book" by Dr. young is good. We actually bought 2- 1 for us and 1 to have the rest of the family read.
You will figure out how to deal with it- it will just take a little time. Since your son is so young it may be easier right now because you can control his environment and what goes into his mouth.
Feel free to ask any questions here- no matter how 'dumb' you may think they are. It is all very confusing at the beginning- we have all been there.
Kim
------------------
Mom to:
Sydney 4 1/2 Allergic to: Egg, Peanut, Tree Nuts, soy, environmental/seasonal and asthma
Noah 2 1/2 allergic to Penicillin

Posted on: Sun, 04/29/2007 - 10:40pm
MarkiesMom's picture
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Joined: 02/23/2006 - 09:00

My son also reacted first to pistachio around age two; (RAST tested pos to cashew/pistachio, neg all other TN) He also had been eating peanut butter for several weeks prior (however, without any noticeable reaction). DS's SPT was a 2 for peanuts (never RAST tested for peanuts). Fast forward a year later, and DS still eats peanut butter, we avoid all tree nuts and traces of. Anyhow, from what I understand, past reactions are a good indicator of future reactions, however, there are always exceptions, and you should consider any reaction has potential for anaphylaxis. Testing is a helpful tool in determining allergens, however, tests are used to diagnose FA in conjunction with past medical history.
Our house is completely tree nut free; I call manufacturers, avoid may contains and traces, don't really eat out much (not much fun with a three year old, anyway).
I remember crying for a solid week when DS was first diagnosed. I often wondered what would have happened had I waited until DS was three to introduce nuts, but you can't blame yourself.
It really does get easier as you adjust to your new lifestyle.

Posted on: Mon, 04/30/2007 - 2:40am
niche's picture
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Joined: 02/05/2007 - 09:00

Hi, I just want to add a couple of thoughts to what the others have said. I did wait until my son was three and he is still very very allergic so don't blame yourself! I also wanted to share a area I missed when I was first learning how to avoid nuts for my son. I had read that bakeries can be dangerous I was like ok I get it don't buy the donuts in the case because the could have been by a donut with nuts etc. I continued to buy bagged store bread (french etc) my son had a reaction to this bread within a month of being diagnosed. I now buy bread from big name mass producers vs items baked in the stores. I also liked The Parents Guide to Food Allergies - from a mom point of view I think it is a good starter book. I also like the books by Dr. Sicherer for a Dr's viewpoint and more technical info.
Take Care,
Nichele
DS 5 PA TNA
dd 10 months ???????

Posted on: Mon, 04/30/2007 - 7:39am
anonymous's picture
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Joined: 05/28/2009 - 16:42

Hi Markiesmom,
I was wondering if your doctor recommended that your son avoid peanuts/Peanut butter? or if he said it was OK based on no reactions?? My son did develop hive above lip after peanut butter but that was about all I noticed and it went away so quick we did not think much of it let alone food allergy! If there were cold symptoms I might not have noticed though because for some time it seemed as though he had one continuous cold that lasted for months. He had peanut butter at least a dozen times throughout the last year.
Also, i find it strange my son is so allergic to pistaccio/cashew....also in the "family" is mango and although the RAST was negative for mango------ when he was a baby I would buy 6 mangos at a time and puree them for him.....mango was a large part of his diet from 6 months-1 year old.....now he has piscaccio/ cashew allergy.
Did you avoid peanuts when your son was first diagnosed with TNA? or just continue them? I read avoidance is better then do food challenge later if IEG levels dissapear BUT it seems to me to continue a bit from time to time would be better so they can lose the allergic reaction. Just like the kids at Duke having tiny bits of peanut flour everyday eventually outgrow the allergy or the kids who grow "out" of it are told to eat peanuts often to keep their immunity.
I'm not a doctor though. I do wonder how much doctors actually know about food allergies and maybe they just err on the side of caution or use the "old" textbook answers. I don't know sometimes!

Posted on: Mon, 04/30/2007 - 7:40am
anonymous's picture
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Joined: 05/28/2009 - 16:42

By the way thanks for everyones input! It really helps!

Posted on: Tue, 05/01/2007 - 3:56am
MarkiesMom's picture
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Joined: 02/23/2006 - 09:00

To answer you question, I'll give you a bit of history with our visits to the allergists...the first one we saw was very conservative -- he gave the initial SPT test and advised strict avoidance of PN and TN. I was told that my DS would most likely develop a peanut allergy somewhere down the road with continued exposure. I did then get a second opinion -- second allergist very liberal with all his recommendations, almost complete opposite from #1. Again, thanks to another PA.com member, I received the name of an allergist out of U of M involved in research and specializing in nut allergies. It took months to get an appointment with him, but well worth the wait. He advised to continue with PN consumption, didn't want to do a RAST for PN to "open that can of worms" (probably for our benefit). He sees many patients that are TNA and eat legumes without incident. I know there is at least one other member on this board who fits that profile. On the other hand, you may hear stories here of TNA people who developed PA later in life. Under the advice of our allergist, we decided to continue to give peanut products; we were also told that theoretically this action could help DS to become immune to any potential PA.

Posted on: Tue, 05/01/2007 - 8:45pm
anonymous's picture
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Joined: 05/28/2009 - 16:42

Thanks. I am surprised to hear all the different results from the doctors! Amazing!
I never did get to ask the doctors my "many questions" when we got my son's results. The nurse just called and read them off and gave me "the class of RAST" (like I was supposed to know what that means!) and said "the doctor reccomends avoidance of all tree nuts and peanuts...bye.
When I called back to "question a little more" the nurse piped up and said the only chance to outgrow it is strict avoidance. OK, I'm not about to let my son come in contact with a tree nut....but peanut is my concern. They are everywhere and I have stuck in my head that strict avoidance will only make him more allergic in the future to peanut. Now I am avoiding Peanuts at the time, but I would love to get another opinion. I thought the next doctor might think I am crazy, or in denial if I go and he has nothing to tell me but the same exact thing after looking at the results.
Oh well. I did just request the results of the Rast so I may go to another doctor.
Thanks,
Sue

Posted on: Tue, 05/01/2007 - 10:58pm
notnutty's picture
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Joined: 03/15/2004 - 09:00

Sue: I think you will find as many different answers as there are questions. I don't think the doctors really know what is causing so many food allergies or the best way to treat them. I would get a second opinion. If nothing else, meeting with an allergist may help you get some of your other questions answered.
My son is very, very allergic to peanuts. We had no other option than strict avoidance. Just a word of caution: Until an allergist tells you it is all right to feed your DS peanuts, I would continue to follow strict avoidance. Peanut reactions can be very unpredictable and could go from very mild to life-threatening without a warning or an gradual increase in severity of reaction.
Welcome to PA.com.

Posted on: Wed, 05/02/2007 - 10:13am
anonymous's picture
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Joined: 05/28/2009 - 16:42

Thanks, I will take your advice and strictly avoid all nuts but seek more opinions. It seems like food allergies should be more "black and white" and not so many gray areas as there are now. I hope someone soon uncovers the mystery!
Sue

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