Very pleased to have found this site

Posted on: Thu, 10/28/2004 - 7:25am
Mom to Grant's picture
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Joined: 10/28/2004 - 09:00

Im Elizabeth and my son Grant is 27 months and diagnosed with severe peanut allergy.
its just a blessing that we have this sort of comradery and support via online regarding such an overlooked underestimated condition.

My worst nightmare no doubt in my mind is for my son to have the reaction. Its such a helpless, powerless feeling to know that not if but when your child will come across peanut substance. I think that if the severity was lower I could live a little less stressed out but his class is a VI.

found out at about 18 months when giving him a tiny bit of peanut butter..not knowing. since then doctor has insisted he wear a medalert bracelet and have epipen on me at all times. The RAS test showed up 40.0 plus for the reaction which is off the charts.

Im truly sick about it, and dont know if my son will be able to live truly honestly to be an adult young man. Too much ignorance, too much room for error for me to even be remotely comfortable. If he does not get an epipen IMMEDIATELY his chance of survival is almost nil.

Anybody's child peanut allergy off the charts like this? How do you cope? How do you handle it? My husband reminds me to have faith in God and to do our best every day thats all we can do.
elizabeth

Posted on: Thu, 10/28/2004 - 10:24am
2boyMom's picture
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Joined: 10/07/2004 - 09:00

Hi Elizabeth. Welcome to the board!
My son's peanut scores aren't as high as your son's sound, so I really can comment other than to say I really feel for you. It sounds like you have a good doctor and that you are doing everything that can be done. I myself chose to stick my head in the sand for awhile after we found out about our son's allergy. I mean we checked the obvious stuff, but I just couldn't bring myself to face it all the way. Thank the Lord nothing happened to him! I finally came around to the point where I now want to know everything I can about the allergy, products, new studies, etc.
I know you feel guilty, like you've done something wrong or haven't been a good mom to your sweet little guy. We've probably all felt that way. But, you have to realize that you did the best you could with what you knew at the time. I ate peanuts and pb without reservation when I was both pregnant and nursing. No one ever told me to stay away from them. But, had I known, I wouldn't have touched them with a 10 ft. pole! Please don't beat yourself up about his allergy. You wouldn't have chosen it for him, if you'd had a choice!
Your husband is right. We can all do as much as we can and we have to have faith that God will keep his hand over our kids.
Sorry I went on so long, but I just wanted to say you aren't alone!
[img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] Amy

Posted on: Sat, 10/30/2004 - 3:50am
alwaysconfused's picture
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Joined: 10/30/2004 - 09:00

I have a big problem. My DS 5 years old was diagnosed in the Spring with PA. We were having lots of problems with respiratory airway disease (AKA asthma) and our pediatrician sent us for IgE testing. It came out that he was "very allergic" to what who knew we were referred to allergist/immunologist. I was told he was allergic to peanuts and shellfish. I already knew about the shellfish as he became very ill the next morning after eating spaghetti with clam sauce on a few occasions. I stopped it and this vomiting stopped. Anyway, after findout out that he is very allergic to environmental stuff, we also found out about the peanuts and got confirmation on shell fish. My son was eating Reeses peanut butter cups every single day. He never, ever had a reaction, ot did he. Could it be that his respiratory (asthma) was being caused by the peanuts. I have noticed that he is not as sick as he used to be since I stopped the peanuts, etc. Help I am very confused. Thanks for all of the information you all post. Sooo very helpful.
Adele

Posted on: Sat, 10/30/2004 - 12:04pm
Mom to Grant's picture
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Joined: 10/28/2004 - 09:00

Amy and Adele
thanks for your posts.
I am going to just do my best as all of the other good moms out there are doing and put the rest in Gods hands.
Thanks for your kind words. Adele, I think whats going on is that your child has a tolerable allergy to peanuts and he is just being aggravated by it but the immune system seems to be able to recognize it somewhat so he is only uncomfortable.
My son grant also has egg/wheat allergies and he eats it in products and it doenst really affect him but i know it does mildly.
stay away from those things if you can, and be glad its not really severe. something even more confusing is that numbers on the tests shouldnt be taken seriously though because sometimes the body will flip out and react violently with any given reaction even if the class of allergy isnt very high. nothing to count on, very frustrating.
my son is class 4 not 6 like i said, my mistake, but still WAYYYYY up there in the numbers.
hope to hear from you gals, we are in the boat together, best wishes for your kids
elizabeth

Posted on: Sun, 10/31/2004 - 1:19am
alwaysconfused's picture
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Joined: 10/30/2004 - 09:00

Elizabeth,
Thanks so much for the information. I also have put alot of this in God's hands and try my very very best to keep him away from peanuts, etc. I don't even know what everyone is talking about with scores. As I just started this in the spring, my alelrgiest didn't explain anything. I am searching for a new one and will hopefully make an appointment soon. This website has made me aware of the questions I need to ask the allergist. Let me tell you that the first time I walked out of the allergist's office he did not even give me a prescription for an epi-pen. I researched a bit and called for a prescription. How about that. He is supposed to be the best but I do not think so. Anyway, thanks for the info and it is soo good to have a place to go for other's experiences, and what works and doesn't. It is so hard when you feel all alone in this. Even the school is not very cooperative and I am also wanting to find out more about this 504 business. Well, I guess I will have to find another 24 hours in my day? LOL. Thanks again,
Adele

Posted on: Tue, 11/02/2004 - 7:43am
Mom to Grant's picture
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Joined: 10/28/2004 - 09:00

Adele,
I haven't gotten as far to find out about the 509? Its a form for school right?
Hang in there with the rest of us. Your doctor really should have mentioned an epipen if his allergy is severe. Thats odd!
I know how you feel about feeling alone because you truly are alone. We are all the only ones who really are in charge of our kids safety and noone truly truly understands what it is like to stress over protecting your child all the time and be on high alert every time they do something as simple as go to a freinds house or school.
Moms that dont have kids with lifethreatening allergies are clueless to just how lucky and blessed they are. Allergies do make life harder but we will get through it, just not try to overcontrol everything and just pray and do your best!
Great to hear from you
Elizabeth

Posted on: Tue, 11/02/2004 - 11:36am
Anonymous's picture
Anonymous (not verified)

Quote:Originally posted by Mom to Grant:
[b]Im truly sick about it, and dont know if my son will be able to live truly honestly to be an adult young man.[/b]
Elizabeth, I have to comment on this statement. I have adult on-set allergies, but there are quite a few teens and adults on this site that grew up with pa. I don't think peanut was in as many things then as it is now - but it was always a lunch room staple. AND, when some of these people were kids, there was no epi-pen available. AND, nobody knew anything about cross contamination and trace amounts.
I do completely understand how you feel. I have a six year old with an allergy to insect bites and stings. But, I just wanted to let you know, that, yes, Grant will grow up. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] 'Cuz he has soooo many things (like his mom) on his side.

Posted on: Wed, 11/03/2004 - 7:57am
alwaysconfused's picture
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Joined: 10/30/2004 - 09:00

Elizabeth.
Thanks so much. I found out about 504 on Halloween. I had read about it heard about it but did not really look into it. In a nutshell (LOL) it gives your child certain rights under the children's with disabilities law, Section 504. For James, he is to have no peanuts around him and he is going to have an aide. This aide will be in the lunchroom, classroom, etc. whenever and whereever there is food. She will monitor the children around him to ensure that noone has peanuts near him and make sure desks, etc are cleaned after snack, etc. The only reason why I am demanding this aide is because if you read my other post I stated that on the first day of school this year a child with a peanut butter and jelly sandwich was seated next to him in the cafeteria. My girlfried who was a volunteer mom in the cafeterial called me because she moved James, not the general lunchroom aide who was supposed to have info on James, his allergy and make sure no one with PB&J sat next to him. I told the school that I do not trust them anymore and if I could I would take him out. SOOO, on Halloween I ran into a mother who gave me the whole scoop on 504 and as soon as I called adminstration and mentioned it my phone rang ten times in 1/2 an hour. OH my. The school was supposed to tell me and they tell me that my ped/allergist should have (BIG LIES ALL AROUND). Anyway, after severe fighting on Monday, six hours worth of yelling, I am now getting a 504 plan for James. There is a website-Allergy Initiative.org and you can find info in there. I do not know how to put in links, sorry. Sorry so long. Good Luck
Adele

Posted on: Wed, 11/03/2004 - 9:56am
mommyofmatt's picture
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Joined: 03/12/2004 - 09:00

MomtoGrant,
Hi, Glad you found us. My son was a class VI at 1 yrs. old and now a class V at 2 1/2. So his numbers have gone down, yeah!!!
We haven't had any anaphylactic reactions (knock on wood, say a prayer), only 1 contact reaction from peanuts in the bathtub of all places...My shampoo was made with peanut protein and I didn't know it (we were just learning about the allergy then). He had a string of hives from shampoo residue.
Your son will grow up to be a healthy, happy adult, I swear! I fully believe my son will. You're his first best defense. Learn all you can everywhere, and you'll be able to protect him.
You'll make the best decisions for your child when it comes time for school by setting up a 504 plan, picking the right school etc.
We've been dealing with this for 18 mos. now, and I feel much better than I did even 6 mos ago. It takes time.
We're here to help! Spend lots of time reading the board, checking out the recommended books etc. and you will be able to keep your son safe. Take care!
------------------
***[b] ALLERGY ELIMINATOR*** [/b]
Meg, mom to:
Matt 2 yrs. PA,MA,EA
Sean 2 yrs. NKA

Posted on: Thu, 11/04/2004 - 11:35am
AngieRN's picture
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Joined: 11/04/2004 - 09:00

Hi Elizabeth,
Reading your posting made me so sad. My 11 month old son, Dustin, was just today diagnosed with nut/wheat/egg allergies. We did not have to get the blood test done yet because the allergy doc said we would do it at the follow up appt. The whole thing is so upsetting to me and I can relate to how you feel. Dustin also has eczema which the doc said, all things combined, he has a >50% chance of developing asthma too. I don't know what the next reaction will be like but the first one was really scary. I know it will happen again, it's just a matter of time. I hate that my little guy is now so vulnerable. As if he doesn't have enough tough things to deal with growing up. Just wanted you to know I'm with you mom.
Angie
------------------

Posted on: Fri, 11/05/2004 - 8:08am
gerilynn's picture
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Joined: 09/17/2003 - 09:00

My daughter's numbers are also off the charts. She is at a 57, and two yeards ago it was at a 5. I don't really understand this as she has never had a major reaction, just one skin one (Bath and Body Works lotion)
We work hard and pray harder! That is how we handle it!
And educate, educate, educate!

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