so strong

Posted on: Mon, 06/25/2007 - 1:37pm
16pamom's picture
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Joined: 05/16/2007 - 09:00

hi everyone i am new here my name is staci and my 16 year old daughter is kim. kim has always had alot of health problems she was born with a hole in her heart, which has partially closed itslef. then when she was seven she was diagnosed with and acute blood cancer, she has been in remmission for nine years!!! then her freshmen year of high school she developed severe allergies that just keep getting worse. she is allergic to bendryll. this school year she recieved seven epis and was admitted to the hospital for six of them. one time she accidently ate a peanut, she was intabated for the night and kept for in the ccu for several days because the reaction kept coming back. one time at tthe hospital we were waiting to be transferred to another one and the nurse gave her bendryll and things got real bad, i was so upset becasue i told the nurse she was allergic. kim is such a tough little girl. i think that i am more scared then her. she has totaled over 50 epis in three years. she so badly wants to do everything her freinds do but i am so scared. i try not to be to pushy but i am so scared. how do you all deal with this??? she is severly allergic to bees and wants to go to cookouts and have a fun time, i dont know what it is but she has been stung three times this summer, they must love her. i am at a loss i live in fear for my babys life. i hate seeing her lay inthe hospital time after time, i wish she oculd have a break.
the other night we were talking as i was giving her her meds and i asked her how she can do all this and she looked up at me and said " mom i love life so i suck it up and go on" i almost cried how can she be so strong and me so weak.
i am up for any advice
staci

Posted on: Mon, 06/25/2007 - 10:25pm
KS mom's picture
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Joined: 03/02/2006 - 09:00

Wow! Your daughter is very strong. I look at my 12 yo daughter and think the same thing.
50 Epis in three years is ALOT. Have you figured out everything she is allergic to or are the epis for mystery reactions? The poor girl. It must be so difficult.

Posted on: Tue, 06/26/2007 - 12:13pm
16pamom's picture
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Joined: 05/16/2007 - 09:00

hi everyone thanks for the replies
most of them are mystery reactions a few we knew what they were too. but we kept a food log for a long time so that we could test her for the foods that were common, so far we have nuts, shellfish, bees, red 40, blue 1, sesame, citrus, celery, chedder cheese, chocolate, soy, pork, and we are still haveing mystery reactions.
staci

Posted on: Wed, 06/27/2007 - 9:15pm
Going Nuts's picture
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Joined: 10/04/2001 - 09:00

Has any MD mentioned the possibility of something called idiopathic anaphylaxis? It's basically anaphylaxis from no known cause.
I can't imagine how frightened you must be for your DD. She sounds like one tough little cookie. I wish you both nothing but good times from here on in.
Amy

Posted on: Thu, 06/28/2007 - 3:42am
April in KC's picture
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Joined: 08/28/2006 - 09:00

Hi Staci,
Your daughter's attitude is incredible, awesome.
I know this may sound odd, but you can check it out on this board and other places if you want. Have you heard anything about research (and maybe clinical trial, I can't remember) involving a Chinese herbal treatment that helps dampen the anaphylaxis response in mice? From what I've heard, it's a promising area of research. A lot of modern pharmaceuticals are developed from Chinese medicine. I couldn't help but think of it, and there may be some hope for your daughter to have fewer severe incidents in the future. I wonder if it would be possible to get her into a clinical trial for the treatment? It seems like the treatment helped quiet the anaphylaxis response in mice, even 6 months later. I will go to the research board and bump the post if I can find it.
April

Posted on: Thu, 07/05/2007 - 10:53am
16pamom's picture
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Joined: 05/16/2007 - 09:00

April, that sounds very intresting i will have to ask the doctor at the hospital tomorow, since she is in there again, stung by a bee yesterday and reaction just wont stop. thank you
staci

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