son newly diagnosed with peanut and tree nut allergy- need advice

Posted on: Mon, 02/25/2008 - 1:14pm
nutty1's picture
Joined: 02/24/2008 - 12:46

My 4 year old son was just diagnosed with peanut and tree nut allergy. We suspected peanut allergy since he has vomited and voice became hoarse on several occasions after eating peanuts. He scored a 4plus for peanuts on the test he had. Not sure if this means his allergy is severe, I believe it does, or if any peanut allergy is considered severe due to the potential for anaphalactic shock. I have several questions and concerns.
Daycare, he goes to daycare 3 days per week. This is not a peanut free daycare, and after talking to the director have discovered that my son will be the first child at their facility to have a peanut allergy who is there all day- not very comforting to put it mildly. They had one other child with PA who was an after school only kid and was not fed there. His teacher asked me "if the other kids are eating peanuts, does he need to leave the room?" I'm not sure what the answer is to this question. This is what I need help with, do all kids with PA react to being NEAR someone eating peanuts?? Do some kids have severe peanut allergy but only to ingesting them, and can sit next to someone eating them and be fine? I understand he can't eat them, but do I really need to keep him away from others that are?
My next question pertains to "504". How would this benefit my child if I pursue this for him when he enters kindergarten? What exactly does this do for him? I have learned that the state of IL does not have "peanut free schools". They will have a peanut free classroom, and a peanut free table in the cafeteria, so if they already accomodate in this way then why would I need a 504? If someone could clue me in I would appreciate it.
My next question pertains to food choices. Is it really necessary to avoid all foods that say "may be cross contaminated with peanuts", or "may be processed in a plant that makes peanuts"? I'm reading food labels more closely now, and some of the foods that he's eaten for years and never had a reaction to say this. I want to protect him and be cautious, but I don't want to be over the top/neurotic cautious if that makes sense.
Lastly, I have read conflicting info about the RAST test. My son was previously allergic to milk, but now came up negative and they are suggesting a RAST test to confirm its negative, and then an in-office 'have him drink milk and see what happens' test. Does this sound like the proper protocol that allergists do to confirm a negative test?

Posted on: Tue, 02/26/2008 - 3:24am
niche's picture
Joined: 02/05/2007 - 09:00

Hi and welcome,
I will try to answer several of your questions. Is a 4+ mean that his allergy is severe. I can tell you a few things. One is that many refer to being allergic as an all or nothing condition. the reason for this is that you really can't predict the severity of a reaction via the tests. Also you can't predict the severity of the next reaction based on the last reaction. however it sounds like your son has had similar reactions more than one time to peanut and they sound quite severe to me the hoarse voice would worry me in regard to throat swelling. If your test was a blood test or rast I can tell you that 4 is rated as highly allergic.
Daycare - ok that is a very hard question and you will likely get many opinions on that. I would try to get the school to go peanut free if I was in your position. However my son is going to public school next year and at lunch he will have to be in the room with kids with PBJ as the schools can't limit what is sent in.
there are many threads on 504 if you search in schools you should be able to find them. It is my understanding that a 504 holds the school legally responsible for making accomodations for your child and a key phrase I see is in the least restritive environment. Meaning they make the situation safe for your child without say doing something like putting him outside the room away from the other students.
May contains and process on the same equipment or in the same facility I have a strong opinion on this and we avoid completely. based on studies i have seen somewhere between 7 and 17% of the products studied did indeed have detectable peanut protein in them. I understand how you feel about the product being safe for many years my son wasn't diagnosed until he was three and he had eaten items like plain M&M's for a couple of years. Within a month of being diagnosed my son had a reaction to the same bakery bread he had eaten many many times before. I now understand of course how risky bakery items are and we don't use any bakery items with the exception of big name company sandwich breads.
Rast - the allergists we have here tend to track the kiddo's numbers via rast over time and if the # drops low enough they would do a SPT and if it was neg they would then suggest an IOFC based on the results.
Hope that helps some, sorry for being a bit vague on the daycare and 504 questions but those are items where my comfort zone really isn't set right now.

Posted on: Tue, 02/26/2008 - 10:12am
Mrsdocrse's picture
Joined: 01/16/2007 - 09:00

Hi There, ok.. here is my two cents: First, Sorry about the diagnosis. I agree that is sounds like he has a severe PA. But a gree that it doesn't matter what the test says. positive is a positve and does not predict wether or not they will have a mild or sever reaction. and each reaction can be different.
Day care: I would at the very least push for a peanut free room. Just because they are little 4 year olds touch eachother and share food ect and I think It will be hard to monitor properly. I would prefer that my son not be sitting next to some who is eating PB &J. However we have been outside or in a public place where someone was eating it. He was fine. But if they touched the surface and then he touched the same place and touched his mouth her would have a reaction.
We DO NOT eat any products that say " may contain" because I have read that a large # of them actually do have it. That is why it is labeled. Even if it is things that we have had in the past. I don't mind if the kid next to him eats a " may contains" but it is not safe or a PA kid.
Negitive tests: Allergist do do " food challenges" on certain foods in SOME offices. My Dr will on a occation. It is don in small measured amounts and monitored very closely and there generally has to be several negitive test results before they will do this challenge.
I have not gotten a 504 plan for my son. I did not think It was necessary as he is in a peanut free school and the school nurse is very aware and has several kids with food allergies. But i am am condiering one now because we have recently had some shake up inthe school sytem and if we loose the school nurse or principle I will wish I had a 505.

Posted on: Tue, 02/26/2008 - 11:50pm
MommyOfTwo's picture
Joined: 11/08/2007 - 09:44

Welcome to the board and I too am sorry about your son's diagnosis. I don't really have anything to add in addition to what has already been said. I too keep all "may contains" and "processed with/on/at" out of the house and away from my pa DS.

Posted on: Tue, 03/04/2008 - 4:26am
OriJuice's picture
Joined: 03/04/2008 - 10:50

Hi there =D
Kyle here, I am an 18 year old with severe PA, lived with it my entire life. I went to school in the era were peanut allergies were just getting to be realized pretty much so I may have some helpful hints for you.
1: Pack your child a lunch you KNOW is completely safe. No may contains, make sure you know the extent of the allergy (PA may also include Pistachio, walnuts etc) and go from there.
2: Urge the teachers to learn about the Allergy if they don't already know about it; this is key in keeping the child safe. You may already have a clue how many times I had to explain to a teacher as a 8 year old what a peanut allergy is.
3: Make it clear to the child that they should not eat anything from the daycare, no home made treats from the teacher (Unless cleared with you personally) and certainly no snacks from the other kids.
4: Kids can get into things, we know this. Urge the teachers to pay more attention to your child during snack/lunch time; this will ensure other children's food will not find their way to his/her mouth.
5: Make newsletters for the teacher to give other parents that contain information about the Allergy. Education is power, and having other parents know is much better because it gives a higher level of control over what substances enter the daycare.
Hope it helped.
PS: I hear other people talking about "Peanut Free rooms"
I suggest against this, it may sound like a good idea but it really centers your child against different treatment. Not only from teachers but from other kids. Peanut allergies are a big threat socially to a child, I know this from first hand experience. We all know how nasty some little kids can be, and trust me; elementary school wasn't nice because I was seperated and put in another room for lunch, pretty lonely in there; even lonelier when people make fun of you for it. You need to educate yourself and other people foremost I believe, there is a difference between "Direct action" (Coming up with a solution in the moment.) and "Social Action" (Educating others, a bit more lengthy. But much more effective in the long run).
I urge you as a child who had to deal with this that you try to keep the social interests of your child intact (Especially when they start Kindergarten and Grade 1). Always search for new alternatives and not just the thing that has worked for everyone else, because somewhere down the line a person needs to blaze the trail and not follow it.

Posted on: Fri, 03/07/2008 - 5:39am
nutty1's picture
Joined: 02/24/2008 - 12:46

Thank you all for your input, I appreciate all the advice and have learned a lot just from this website and reading these posts.

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