update- vent

November 12, 2008

hello,

I don't post much due to the crazy busy time in life, but, I do try to read

most posts and keep up with the group.

As you that know us know that Brittany was going through some tough times.

Problem is she still is! She has been having hives and swellings almost daily

for over 2 years now. She is on several antihistamines and Pred. daily to

control it. It doesn't fully control it, she still gets hives almost daily. But

the bad part is she can't do anything without swelling. She can't walk very

far, feels like she is walking on golf balls, her feet swell so bad and so do

her hands. The pain is awful! She has become worse lately, no quality of life

at all. She can't even make it through a grocery store! She also has other

triggers. But she keeps trying, she doesn't give up! But I can see it is

getting to her as things become worse.

She is hungry then may take a few bites only to get sick and can't finish

it. You just never know. Her stomach was checked and all was okay.

Now at her IVIG she is starting to get severe allergic reactions ( shock )

half way through her infusions. It has happened 6 times now! Funny thing she

has been on this brand for years and was doing good until ALL this happened!

We went to the doctor today and he is going to try her on a new product and

have her try it in the intensive care unit.

With all this he tested her and found out she was vitamin D def. Sent us to

a endocrinologist. He diagnosed her with Hyperparthyroid (secondary ) due to

vitamin D def.

He brought her Vit.D up passed were it should be and now says that she has a

deficiency in her kidney that ( one alpha hydroxyl? ) So her kidneys need

help to do there job. Puts her on meds for that. That scares me to death! Are

her kidneys okay? Isn't that a rare side effect of IVIG, kidneys failing??

This new doc. the endo, is mad at the Immune doc for not responding to his

letter. He said he need to know some things about her side effects of IVIG

etc...When I told her Immune doc nicely today what he said he got an attitude!

He also got mad at me when I told him I wanted her checked with a specialist f

or masto. Hey, what can it hurt, she has all the symptoms. I asked him a year

ago and he didn't want to either now she has more of the symptoms. When I

asked him about one of the meds he said it was just like water, I was shocked!

Janet, mom to Brittany age 17, CVID, Uriticaria & Angioedema, Vitamin D Def,

Secondary Hyperparathyroidism

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