6 yo son newly diagnosed with PA/TA

Posted on: Wed, 06/23/2010 - 4:28am
jenluth's picture
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Joined: 06/23/2010 - 10:30

Hello,

We have known he had allergies since he was about 2, he started with asthma and needing singular and flovent daily. I started asking for allergy testing then, but my Doctor thought he was too young, so we just recently decided he was already on so many meds, we needed to find out what he was allergic to. They started with the blood test, which came back positive for peanuts, walnuts, soy, milk, and dog. I was so scared. Many of these things he has all the time. we skin tested for just peanuts and it was positive. We chose to do a peanut challenge and he ate them with no problems...so good news. The doctor scheduled a more comprehensive skin test, and decided that he wasn't allergic to the others because he has been eating them without problems.

We went in for skin testing, which was bad. He was allergic to all the grasses, most of the weeds, and almost all of the trees in our area. But, he is already maxed out on his allergy meds, so we were just supposed to keep him inside as much as possible...not very easy with an active 6 year old boy. But, as the cottonwoods have bloomed, even with 3 different allergy meds, he is getting bloody noses, sinus infections, runny noses and puffy eyes.

On to the second food challenge. The doctor wanted another blood test on peanuts and nuts, because the information seemed so different. He showed an extremely high allergy to both Peanuts and several of the tree nuts. So, we scheduled another food challenge. They started with a half of a gram of a peanut. He immediately got hives on his back and stomach. The doctor stopped the food challenge and said he is allergic to peanuts. because of the positive on the tree nuts, we were told to keep away from those, too. So, we got an education on how to use an epi-pen and I just can't stop worrying.

A week later...we had decided we could have PB in the house because our girls love it, and we thought his reaction was fairly small. Husband ate PB toast and kissed Hunter goodbye. Within ten minutes Hunter had hives. So, now we know, it is a bit more serious.

The issues that I am having, is knowing what is safe to eat and what is not. It is just so overwhelming. We have tended to eat out a lot, and now we are trying very hard not to...and we also have never eaten very healthy, and almost everything we have eaten has been in contact with nuts. Hunter already feels totally deprived and I just don't know what to do to help. I make cookies here, muffins, we bought an ice cream maker...any other suggestions to help?

Posted on: Wed, 06/23/2010 - 9:27am
cervonil's picture
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Joined: 04/28/2010 - 12:30

I'm so sorry, I know what you are going through. IT is so very difficult and so very scary!!
We were just diagnosed with severe peanut allergy 2 months ago. So we're still learning. Get some books from the library to educate yourself and family, find a local support group - I think I found one through FAAN's website. Start calling manufacturer's and make a list of safe foods for him. Keep a journal of his foods and reactions. Personally I would get the PB out of the house, but that is my comfort zone. My son has had 3 anaphylactic reaction, last one I had to give him the epi and rush to the ER by myself and newborn. You do not want to go through that if you can help it.
Oh sorry!! My baby girl is crying, so I'll post more later!

Posted on: Tue, 07/06/2010 - 8:40am
double concerned twinsmom's picture
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Joined: 07/03/2010 - 17:15

My twin daughters were diagnosed 15 years ago! I remember how scary it was until I came to understand it all. I will share what "we" feel are safe places to eat out. You will find that different families have differing comfort zones. You will have to pave your own way. We have eaten at Wendy's, Taco Bell, Arbys, Fazolli's, almost all pizza res truants (Pizza Hut, Pappa Johns, Noble Romans...), Italian Restaurant like Johnny Carino's, Olive Garden etc. Red Lobster, Montana Mikes Steakhouse. Look in the link for Restaurants and read what others feel comfortable doing. That helps!
We do not step foot in restaurants that serve peanuts in any form. Do not eat at buffets! Too much chance of cross contamination. Never go to a "scoop" ice cream parlor. You can do soft serve type at Wendy's (plain frosty's..don't do the twisted frosty's); We just did go back to Burger King from info. I received on here last week. Daughter had a strawberry shake and loved it! You can buy Ben and Jerry's or Hagan daaz Ice cream. They are the ONLY ice cream manufacturers that break down their equipment and completely wash it so that there is not cross contamination. If you go out and it is a new restaurant ALWAYS ask for a manager and completely explain the severity. If they act like it is not important or like they are too busy....we walk out!
Oreo clearly marks their cookies and label for cross contamination. We have bought Nabisco cookies for years without a problem...but just read where some of you don't trust them. We have bought soft chewy; or crunchy or chocolate chunk cookies.
I would encourage you to look for a food allergy support group in your area. If there is not one close, look further away and call or email those parents. I just found one near me and talked with another mom for a long time. Find an allergist that is referred by a food allergy support group. The first three that we went to gave us this advice: "avoid peanuts". We need more than that. Most of what I learned came from this website many years ago! It helped so much to get feedback from other parents that were walking a similar path as we are. Good luck. You will find peace with it in time.

Posted on: Thu, 07/08/2010 - 12:01pm
Mrsdocrse's picture
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Joined: 01/16/2007 - 09:00

Hi There,
I understand your concern. My son is now 9 and we have known since he was 3 that he was allergic to peanuts. You have to find your own comfort zone. It just takes time. I personally do not keep PB in my house or "May contain" products. You may want to try sunflower butter. I get mine at Trader joe's however there are other brands. I think it is very tasty and looks and and has the same texture as PB. I put it on english muffins, in a sandwich with jelly ect. It is made in a peanut free factory.
I use cake mixes to make homemade cupcakes ect and cookies. I just read the labels. Contact the manufacturers of the products you eat most and keep a file of what there policies are. Check in from time to time and read labels everytime before you buy as they can change.
I am very fourtunate that I have 2 peanut free bakery's im my area so that I can get treats that are safe. But there are some one line as well.
good luck!

Posted on: Sun, 08/01/2010 - 1:07pm
MagnificentMel's picture
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Joined: 08/01/2010 - 19:54

I understand completely what your little guy is going through, i myself have a severe allergy to nuts, especially peanuts, except instead of small hives, i get baseball size hives that last days on end and extreme swelling and bruising.
i myself am i peanut butter lover, so i had to find a substitute. its called PEAbutter, there is a difference in taste, but not much. you can use it for everything you use peanut butter in so maybe you could get the girls and your husband to adapt to it, and hunter wont feel left out.
as far as icecream, ben and jerry's now has certain flavors that are safe to eat, there are even special labels they are required to place on it saying it is ok to eat even if you have nut allergies.
I myself am constantly worried of what i can and cannot eat, so i do a tremendous amount of label reading and be sure even if it doesnt say peanut oil or peanuts or nuts, that it does not say ARACHIS oil, because thats just another name for it.
as far as chocolate and snack foods go, i personally dont feel too safe eating any of it Unless it specifically says does Not contain or come in contact with nuts.
hope that helps any and if you need any more help, jet let me know!

Posted on: Thu, 08/05/2010 - 5:55am
jenluth's picture
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Joined: 06/23/2010 - 10:30

Thank you for all of your comments and help. I am getting better at this, we read all labels, but I tell you, that sometimes i just want to cry. I went to Trader Joe's thinking it would have a lot, and everything we wanted...said made in a facility with nuts. i just wanted to act like a three year old and leave.
I will look into the Ben and Jerry's. Thank you for the suggestion. I am finding that I just don't want to take any chances with him, and I am probably being way too careful, but how can you be too careful with your children?

Posted on: Thu, 08/05/2010 - 8:04am
ltsmom's picture
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Joined: 08/05/2010 - 14:23

Jenluth,
Just wanted to say ...I understand. I don't have much advice to give ...as my 3 year old just had his horrible reaction a week ok today. So I am a NEWBIE Peanut Free Mom.
Just know that if you wanted to cry in Trader Joe's...it would be understandable. As I would have been crying in VONS over the exact same thing.
I read all of the posts to you. I think we just need to give ourselves time to get educated and re-adjust. But yes, how can you be too careful with your kids. I don't feel you can.
You are a GOOD mom as evidenced by posting here. Hang in there!

Posted on: Thu, 08/05/2010 - 5:43pm
cervonil's picture
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Joined: 04/28/2010 - 12:30

I totally feel the same way. I went to Whole Foods and expected them to have a lot and they had one brand and just a few items in that brand. It's Enjoy Life and the cookies and granola bars were HORRIBLE! The thing we do like is the mini chocolate chips and candy bars. they are super expensive, but worth it for an occasional treat. I want to cry all the time. Especially calling companies. Most of them give you the run around or every time you call you get a different answer.
I'm so sorry you have to go through this too! Send me a message anytime you want to vent!

Posted on: Sat, 08/07/2010 - 10:50am
jenluth's picture
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Joined: 06/23/2010 - 10:30

Thank you so much for all of the comments and suggestions. Because we are newer to this, I have a question. yesterday, after eating a sausage egg mcmuffin, he got a rash/hives all over his torso and arms. He has eaten this many times, and never had a reaction. Then, today, we went to Burger King (apparently, we eat out a lot still), and after eating only french fries, he broke out again. Both times I gave him Benadryl. It took at least an hour for him to stop itching, and the rash even longer to go away. Then, today, he said it still itched and felt like someone was stinging him. Is this an allergic reaction? And what is it to? I assume it is a reaction, but I don't understand what it could be to??

Posted on: Sun, 08/08/2010 - 8:22am
cervonil's picture
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Joined: 04/28/2010 - 12:30

Burger King cooks their french fries in Oil which contains: corn, canola, SOY and cottonseed. Plus I think there is Soy in the actual french fry.
Mc Donalds:
Sausage Patty contains Milk
Their Egg contains Soy
English Muffin contains Soy
Plus is there cheese on that?
He may now be having reactions to Soy. That's a tough one to avoid b/c it is in SO much these days. I think you said they skin tested him and he was negative to Soy, and did they do egg? I'd call your allergist and ask him. Got all this info from their websites - just click on nutrition information/allergen info. Hope that helps some.

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