I would like to reintroduce ourselves....

Posted on: Tue, 01/21/2003 - 2:29am
Ginger's picture
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Joined: 11/17/1999 - 09:00

Hi There...
My name is Ginger, I am happily married and have 2 children. We live in northern NJ. My DD is 7 and has no allergies. My Son is almost 5 and has a severe P/N allergy and is airborne allergic to peanuts. We have a story of how we first found out on our web page if you are interesting in reading about it. [url="http://hometown.aol.com/gingrale1/myhomepage/newsletter.html"]http://hometown.aol.com/gingrale1/myhomepage/newsletter.html[/url]

Since we found out about our son, we really took charge with this lifestyle with strict avoidance and educating ourselves with everything we could find about peanut allergy and how to live with it.
I was an old member to this site and within time just stopped posting, I guess to just being so busy. But know I would like to reintroduce ourselves and be apart of the site again.

We have almost lost our son 3 times in his almost 5 years of life. Two times to peanut and one to an unknown cause. This last time really opened my eyes again. He was really sick in Nov 2002 with anaphylactic reactions to what seem to be peanut. After 6 weeks of edema, hives, asthma we find out that it was not peanut. After endless hospital ER visits, skin test and RAST tests they find in his MRI that he had a sinus infection that we could not see in his adenoids. He was allergic to his own virus in his body.

This was our realization that we were getting to comfortable with his allergy. I was getting to relaxed and giving him more foods to try when he could have done without them. This was our wake up call to be on guard again and to stand our ground for him especially since he is starting school this Sept. 2003.
So let me end with a "HI!" and hope to get to know many of you [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Tue, 01/21/2003 - 3:31am
cynde's picture
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Joined: 12/10/2002 - 09:00

Welcome back. Sorry to hear about all you've gone through with your son. It is so important to always have your guard up isn't it.
I'm just wondering how you found out for sure the last reaction was not peanut? I understand you eventually found out it was a virus, but it sounds like you had ruled out peanut before you found that out. Can you tell me is there some kind of test that can be done to figure out exactly what caused (or did not cause the reaction)
------------------
Cynde

Posted on: Tue, 01/21/2003 - 4:57am
river's picture
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Joined: 07/15/1999 - 09:00

Hi Ginger! Welcome back.

Posted on: Tue, 01/21/2003 - 6:34am
Ginger's picture
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Joined: 11/17/1999 - 09:00

Cynde,
It is a long story but I will try the shorten it. One night my son had a slight fever so we gave him Motrin (Ibuprofen.) He has had this many times. Within an hour we were in the ER. He had really bad facial edema and horrible hives all around his neck, face and trunk of his body. They said, confirmed by our local allergist that he was uncommonly allergic to ibuprofen. So I was like great!?!? Now he's allergic to the one medicine that works. He was given epi and we were sent home after several hours once his airway was not in question.
They put him on steroids and we were to continue his zyrtec and benedryl.
Every 3 days he broke out into hives, big painful ones. So we up the meds and back to the ER. Now the allergist said with medicine reactions, you can continue to have a reaction up to 2 weeks after the allergic reaction. So for 2 weeks the symptoms reoccur and we up the benedryl and made him comfortable.
Now a few more weeks went by and still the same symptoms, every 3 days. Then it got worse. His penis swelled with edema one day, and we were at the ER and immediately they gave him an epi shot. They thought for sure he touched a peanut and thus touched his penis and the severe edema took place. It took 2 days for the swelling to go down. The doctors didn't put all these problems together [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img]
Basically thinking he was having a stream of bad luck. Then a few days later his bellybutton started to pop out with edema. We caught it in time with benedryl and epi. The allergist said had we not caught it in time they may have had to surgically put it back in! Now they got really concerned, couldn't have been the medicine reaction or peanut because I take care of him at all times and he was not exposed to peanut in any way shape or form. Then they told me about Idiopathic Anaphylaxis:
Idiopathic anaphylaxis is a severe reaction in which no cause can be determined. It can affect individuals of all ages although females are affected much more frequently than males. As with other forms of anaphylaxis, idiopathic anaphylaxis can be life threatening. Prophylactic daily treatment with a combination of medications can control the symptoms, and most episodes of idiopathic anaphylaxis subside spontaneously after several months or years.
So my allergist contacted Mt Sinai hospital and the doctor wanted him to get his adenoids scanned via MRI.
All the test results(skin & RAST) showed no new allergies had developed so something had to be causing the reaction and the way it was a pattern indicated it was internal and not from contact.
The MRI scan showed my son had a sinus infection that did not properly drain and thus he was allergic to this virus. What confirm this crazy notion was the strong double dose of antibiotics and the infection was gone and (knock on wood) all the reactions went away.
Now the ENT doctor wants to remove his adenoids so this will not happen again but I just can't let myself to do that. So many factors and they are so quick to put him under and remove his adenoids & tonsils. He was never prone to sore throats or ear infections. Doctors seem to be to quick sometimes with surgery. But my son is different from others. Just like other children we care about here on this site. I just need more research on this before we do that. So much for trying to make a long story short! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Tue, 01/21/2003 - 7:47am
California Mom's picture
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Joined: 07/14/2000 - 09:00

Oh my, what a horrible story. I hope you and your son don't ever experience anything like that again. There was another mom who used to post here whose son had possible idiopathic anaphylaxis. I am pretty sure it was "BooAndBriMom", or something like that. As I recall, she never got much help with her posts regarding the idiopathic anaphylaxis as the rest of us had never experienced anything like it. Glad you're with us, and best of luck to you. Miriam

Posted on: Tue, 01/21/2003 - 12:16pm
nealsmom's picture
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Joined: 01/05/2002 - 09:00

Hi, I am also returning to the boards. My 10 year old DS has airborne allergies to peanut. It has been mentioned to us about possible idiopathic anaphylaxis. He
has had so many reactions that I cannot count them. We have learned through blood testing that he also has food alergies to wheat, corn, oats, and tree nuts,and he has a
chemical sensitivity that causes him to hive.
I too just need the support of others and maybe I can be of help to someone.

Posted on: Wed, 01/22/2003 - 12:12am
river's picture
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Joined: 07/15/1999 - 09:00

Wow Ginger and nealsmom! Just when you think you've got some kind of a handle on this thing, something else crops up. My heart really goes out to you guys and to your kids who have had to go through so much. Kudos to you for going above and beyond the 'normal' PA parent responsibilities. And when you need to unload---this is the best place I know of to do it.

Posted on: Wed, 01/22/2003 - 1:57am
Ginger's picture
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Joined: 11/17/1999 - 09:00

Thank you all for the warm welcome.
I am surprised to hear others have experienced Idiopathic anaphylaxis. I a now doing more research on it. When I come across anything informative I will post it.
Thanks for the support! So far he is back to his old self!
Ginger

Posted on: Wed, 01/22/2003 - 2:55am
nealsmom's picture
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Joined: 01/05/2002 - 09:00

Thanks! Ginger, I will be looking
forward to your posts. DS has been
out of school for three days now
because of hives and angioedema.
He has severe head and stomach
pains.

Posted on: Fri, 01/24/2003 - 8:25am
Jeannine's picture
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Joined: 12/31/2002 - 09:00

That sounds awful - I am so sorry to hear that your son went through all that. I am new to PA and have never heard of that type of anaphylatic reaction.
My niece, no known allergies, suffered from constant running noses and sore throats. After many doctor visits they discovered that her adniods were blocking 90% of her airway! She was just two years old when she had them removed at Children's hospital. My sister was wreck at the time but my niece has been in much, much better health since. The situation is different but I thought I'd share since you don't usually hear too much about adnoids.
Welcome back to the site!

Posted on: Fri, 01/24/2003 - 10:26am
Fran's picture
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Joined: 08/09/1999 - 09:00

Ginger and nealsmom ~ Welcome back, we are all here for you and your wonderful kids! Our prayers are with you. Keep posting!
------------------
Stay Safe,
Fran

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