Went to Duke yesterday...

Posted on: Wed, 01/31/2007 - 12:43am
anonymous's picture
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Joined: 05/28/2009 - 16:42

We have good news and bad news. My son has seemed to outgrow his egg allergy. They did SPT and no bump at all for egg and none for peas either. The peanut on the other hand was huge. It was 5mmx11mm. It is still considered a 4+ but his last one he had in July was about the size of a nickel. They took blood for Cap Rast which took them sticking him about 3 or 4 time. I almost passed out I was so stressed. So we get those results on Friday or Monday. The dr was great!!! She works along with Dr. Burks. Well, my son does not qualify for the study. His Cap Rast is too low (1.2). Only people with high Cap Rast level for peanuts are allowed in the study. Depending on the level of Cap Rast they will food challenge him in the hospital in about 3months. I am praying his cap rast is still low. I was totally confused and against b/c of his SPT but they have had alot of success and Dr. Burks is the one that will schedule that. They said that with low cap rast that the positive SPT is the last thing to leave and it could be positive for years and still have outgrown. The only way to know is the food challenge. I don't know if I can do it. My husband was all for it, but we will see.

Well, so I made cookies last night with egg and he ate them without problem. I had a major panic attack last night. I stayed up late listening for him to breath weird or any sign of allergy. Well, I finally fell asleep and had nightmares all night. I need to calm down. Has anyone ever had any problems once there child has supposedly outgrown egg allergy? He has never had a reaction before we knew he was allergic.

If someone can make it to Duke with their child or for themselves it sounds wonderful! I would definetly put my son in it if he qualified.

Posted on: Wed, 01/31/2007 - 1:06am
cynde's picture
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Joined: 12/10/2002 - 09:00

That all sounds like good news to me, -ve for egg and a low PN. I'd be very happy with that.
Just a suggestion, but maybe giving him a new food at night is not the best thing for you to do, just for your own peace of mind. We always try new foods (or foods that he testd -ve for) right after school or early in the day on weekends.

Posted on: Wed, 01/31/2007 - 1:44am
BriandBrinasmom's picture
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Joined: 10/20/2006 - 09:00

Yep, we always do food challenges (with dr. permission, of course) on Saturday mornings when we have a clear weekend so we don't end up in the ER at crazy times!
Congrats, Josh's mom...sounds like really good news. The only thing I've heard about outgrowing allergies is that you should definitely continue to give the previously allergenic food. The kids who have the allergy come back are the ones who avoid the food even after they've outgrown it. Apparently, the body needs to see it frequently to remember that it's safe.

Posted on: Wed, 01/31/2007 - 2:08am
PennMom's picture
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Joined: 08/01/2006 - 09:00

Thanks so much for posting your experience! Was the 1.2 rast a previous one or the one they just did? Sounds great that it is such a low number! We wouldn't have any trouble qualifying with DD's rast- unfortunately! Just too far from Duke, right now anyway!
Did they mention to you if they now are only doing the study with some of the kids getting the placebo? I think the last I heard it had moved into that phase, where you don't know for sure if you get the placebo or not?
Thanks again for updating us!

Posted on: Wed, 01/31/2007 - 2:09am
PennMom's picture
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Joined: 08/01/2006 - 09:00

Sorry, just reread and see you are still waiting for most recent Caprast! Thanks!

Posted on: Wed, 01/31/2007 - 4:20am
anonymous's picture
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Joined: 05/28/2009 - 16:42

The 1.2 was from July 06 so we are on pins and needles to see if it increased out of nowhere. It is torture to wait.

Posted on: Fri, 02/02/2007 - 4:24am
anonymous's picture
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Joined: 05/28/2009 - 16:42

Just got the suckiest news. My sons cap rast has raised from 1.2 to 19.1. I am crying so hard.

Posted on: Fri, 02/02/2007 - 5:48am
PennMom's picture
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Joined: 08/01/2006 - 09:00

So sorry to hear that, but remember it can also go back down. I keep hearing how a lot of kids have their numbers go up around 3-5 yrs old.
<>

Posted on: Fri, 02/02/2007 - 7:08am
p-nots's picture
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Joined: 09/27/2004 - 09:00

just wondering, did you completely avoid egg 100%
my son is egg allergic and we avoid it completely so i wonder if he will outgrow it or if it will get worse. just wondering what you did.
thanks!

Posted on: Fri, 02/02/2007 - 7:25am
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Joined: 05/28/2009 - 16:42

I am trying not to be too upset. I know it sounds crazy but I went from hoping that he will outgrow to no hope anymore. My heart just feels like it is breaking for my son. It feels like being diagnosed all over again.
As for the egg we totally avoided egg. From 18 months to 3 we avioded egg white but July 06 he wasn't allergic to yolk so didn't have to avoid the yolk.
I talke to the doctor and she said they don't know why numbers go up and down. The next time she said it could go down. That is what they are trying to understand. Without eating it how could it go up.

Posted on: Fri, 02/02/2007 - 8:15am
lalow's picture
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Joined: 03/24/2004 - 09:00

"I am trying not to be too upset. I know it sounds crazy but I went from hoping that he will outgrow to no hope anymore. My heart just feels like it is breaking for my son. It feels like being diagnosed all over again. "
I know how you feel. I went through this this week. I was really hoping the tests would come back neg and ds is still allergic to milk and peanut. I think I have finally accepted that the peanut allergy will be life long and actually went ahead and ordered him a bracelet. I have gone 2 1/2 years really thinking it would just go away.
------------------
Lalow
James 5 yrs, NKA
Ben 4 yrs, PA and MA

Posted on: Fri, 02/02/2007 - 11:10am
AlwaysAvoidAnaphylaxis's picture
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Joined: 06/23/2001 - 09:00

Food allergies are an emotional roller coaster. DS wears his food allergy bracelet since he was just 4 when he went to school. If a child with food allergies is in school or away from you, it is a good idea to have a medicalert bracelet on. Also, when kids are young, they get used to the idea of a bracelet and accept it better. When DS started wearing a bracelet, we all put a bracelet.
DS has outgrown his egg allergy. CAPRAST was 18 at age 1 and was 0 to 0.4 for 3 years. Egg challenge for 3 years was positive----eczema and asthma can lead to maintanence of an allergy despite a low caprast. He finally outgrew it at age 8 and caprast of zero. After that, we were told that he should eat some egg every single day. So for about 5 months, he had some egg every single day. Did fine. The allergy has not returned!
CAPRASTs can temporarily go up and they don't know why. It could go down next year.
Good luck!

Posted on: Fri, 02/02/2007 - 11:37am
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Joined: 05/28/2009 - 16:42

He doesn't have asthma now or excema but will eating eggs now cause them? The dr at Duke said it should be ok. We didn't do a cap rast or whatever the test they use is called b/c of neg spt. She said to go ahead and eat it. We are planning on having it tomorrow. I was giving him the baked goods b/c my husband wouldn't be home if something happens and I know I would fall apart.
I can't tell you how many times if I tell someone that he is PA they say so is my child, nephew ... It really is everywhere. I live in a large neighborhood but our street is considered a sub neighborhood. Only about 40 homes. Well, 3 children right her have PA. There children are older. 6th and 7th grade, but both have eaten pb all their lives and boom they have reactions and are diagnosed.
OR
The say that must be so hard. I look them right in the eye and say matter of fact it is not hard. I do what I have to so he stays safe. Blah Blah Blah
We will all get through it together. It is sad that our children have to get left out sometimes, but good ridence to those people. True friends will make accomodations for us and our children because they love us and want him to be safe. To heck with people who think not eating pb is hurting there children. I always assure them really your child can live without it for right now.

Posted on: Fri, 02/02/2007 - 11:47am
KateDe's picture
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Joined: 09/20/2006 - 09:00

I am happy that the egg allergy is gone. But I am sorry that his numbers for peanuts went up. I hate to hear that.

Peanut Free Store

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