daughter with severe PA

Posted on: Tue, 07/11/2006 - 12:07pm
scaredtodeath's picture
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Joined: 07/11/2006 - 09:00

Just got back blood test results for my daughter. Didn't think her PA was so severe. It was extremely, extremely severe.
Now, I am terrified. Can I possibly let her go to school and be with kids who eat PB/J for lunch? Can I possibly let her go anywhere for that matter? How do I protect her? This is so scary and too much for me to take in.

Posted on: Tue, 07/11/2006 - 12:50pm
Daisy's picture
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Joined: 01/16/2006 - 09:00

Welcome,
You have found the right place. This is an excellent online support group with lots of information.
How old is your DD?
Did she have a reaction, or did you find out through testing?
Please remember, the RAST results are only a tool. Nothing definitive. Some here with a very low RAST may still have a severe reaction. Some with a higher RAST may not react as sensitively as others. Just helpful as an individual tracking device. In other words, IMMV.
Please be sure you always have a couple of Epi's on hand, along with Benadryl. Ask the allergist for an allergy action plan, and see the "School" section for more help.
Again, welcome.
Daisy

Posted on: Tue, 07/11/2006 - 1:49pm
scaredtodeath's picture
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Joined: 07/11/2006 - 09:00

Thank you for your supportive words. My daugther is 6 and has had only very mild reaction (swelling of the lips, and itcy tongu) to eating chips that were in the same bowl as peanuts.
The allergist throw out a number and said anything over 14 is considered "potential allergic reaction" and my daughter's number was over 100. Could there have been an error in the bloodwork? We really need to find a cure.

Posted on: Wed, 07/12/2006 - 11:27pm
PAMomInPA's picture
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Joined: 04/04/2006 - 09:00

The first few weeks were the hardest for me. I barely slept. My son suddenly seemed so fragile yet I had to remember that before the dx, he was fine. He had a couple of bad reactions, although it was hard to tell how many since we didn't know at those times that it was PA. But I know we had peanut products around many more times when he didn't have reactions.
I just take it day by day. It's brought me great comfort to know that there are researchers out there working on this. I thank God that my son is in danger from an outside source that he can avoid, and not dealing with cancer or something equally awful.
At first this forum made me feel worse. Older PA people calling themselves 'survivors'? Yikes! The listing of fatalities? Double Yikes! I couldn't even read here at first yet I couldn't stay away and now I'm here eveyday and actually find it quite comforting. This is a serious allergy but it is manageable. The best way to manage it is to not forget how serious it is, which is really all I wanted to do at first.
Honestly, it still bothers me a lot. A LOT. This allergy may not end up affecting DS's lifespan but I know it's taken years off my life. But it's not as bad as the first few weeks. Educate yourself and take things one day at a time.

Posted on: Thu, 07/13/2006 - 6:29am
Nicole2's picture
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Joined: 07/13/2006 - 09:00

Hi,
As I said to my DD, if you're going to have a food allergy, you want it to be peanuts, as it is more common and there is more awareness. I talk to other folks whose children have other food allergies like eggs, dairy and soy, sometimes all of them, and then a peanut allergy doesn't sound so bad! There is still a multitude of foods you can eat.
As for school, 3 words: advocate, advocate, advocate! You have to be militant without coming across as pushy, but still get your point across so people get it. There should be a ban on peanut butter and peanut containing products. Hand out literature and information, train the staff with the Epi-pen, have an emergency action plan in place.
The more you read, the more you'll be prepared.
Good luck!

Posted on: Tue, 07/11/2006 - 12:50pm
Daisy's picture
Offline
Joined: 01/16/2006 - 09:00

Welcome,
You have found the right place. This is an excellent online support group with lots of information.
How old is your DD?
Did she have a reaction, or did you find out through testing?
Please remember, the RAST results are only a tool. Nothing definitive. Some here with a very low RAST may still have a severe reaction. Some with a higher RAST may not react as sensitively as others. Just helpful as an individual tracking device. In other words, IMMV.
Please be sure you always have a couple of Epi's on hand, along with Benadryl. Ask the allergist for an allergy action plan, and see the "School" section for more help.
Again, welcome.
Daisy

Posted on: Tue, 07/11/2006 - 1:49pm
scaredtodeath's picture
Offline
Joined: 07/11/2006 - 09:00

Thank you for your supportive words. My daugther is 6 and has had only very mild reaction (swelling of the lips, and itcy tongu) to eating chips that were in the same bowl as peanuts.
The allergist throw out a number and said anything over 14 is considered "potential allergic reaction" and my daughter's number was over 100. Could there have been an error in the bloodwork? We really need to find a cure.

Posted on: Wed, 07/12/2006 - 11:27pm
PAMomInPA's picture
Offline
Joined: 04/04/2006 - 09:00

The first few weeks were the hardest for me. I barely slept. My son suddenly seemed so fragile yet I had to remember that before the dx, he was fine. He had a couple of bad reactions, although it was hard to tell how many since we didn't know at those times that it was PA. But I know we had peanut products around many more times when he didn't have reactions.
I just take it day by day. It's brought me great comfort to know that there are researchers out there working on this. I thank God that my son is in danger from an outside source that he can avoid, and not dealing with cancer or something equally awful.
At first this forum made me feel worse. Older PA people calling themselves 'survivors'? Yikes! The listing of fatalities? Double Yikes! I couldn't even read here at first yet I couldn't stay away and now I'm here eveyday and actually find it quite comforting. This is a serious allergy but it is manageable. The best way to manage it is to not forget how serious it is, which is really all I wanted to do at first.
Honestly, it still bothers me a lot. A LOT. This allergy may not end up affecting DS's lifespan but I know it's taken years off my life. But it's not as bad as the first few weeks. Educate yourself and take things one day at a time.

Posted on: Thu, 07/13/2006 - 6:29am
Nicole2's picture
Offline
Joined: 07/13/2006 - 09:00

Hi,
As I said to my DD, if you're going to have a food allergy, you want it to be peanuts, as it is more common and there is more awareness. I talk to other folks whose children have other food allergies like eggs, dairy and soy, sometimes all of them, and then a peanut allergy doesn't sound so bad! There is still a multitude of foods you can eat.
As for school, 3 words: advocate, advocate, advocate! You have to be militant without coming across as pushy, but still get your point across so people get it. There should be a ban on peanut butter and peanut containing products. Hand out literature and information, train the staff with the Epi-pen, have an emergency action plan in place.
The more you read, the more you'll be prepared.
Good luck!

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