Re: W - autoimmune disease from Suzanne - not cp related

August 20, 2004

,

Thank you very much for your very informative answer. Joey has not

been tested for lupus. He started out with the worst allergies

anyone had ever seen. His food allergies were so severe that we had

to feed him a special formula thru a g-tube until he was 7 or 8. He

was only able to eat apples and grapes. But, the formula was a God-

send because he was deathly ill until we found it. We had him in the

ER a couple of times a week not breathing. He even arrested one time

while he was in the hospital. It was shortly after we got the food

allergies under control that the pancreatitis started.

You really put my mind at ease by telling me that both you and your

sister are able to manage your diseases. I know it can't be easy,

but it is reassuring to know that there are treatments that are

effective. Joey had a terrible problem with infections before

starting with eye infections, constant ear infections, many, many

cases of pneumonia, sinus infections, strep throat, and when he had

his port, he had more line infections than I could count. Lately,

since he has been on daily antibiotics, he seems to be doing well.

He hasn't had a sinus infection for a few months. I have to tell you

that I lost a lot of sleep worrying about the autoimmune aspect of

his illness. You have really helped me to understand it better.

Thank you very much!

I'm pretty sure that Joey's immune system had a good response to the

pneumonia vaccine, but he can't get flu shots because he is severely

allergic to eggs. I keep in touch with the school nurse and if flu

is going around, I'll just keep him home.

It must be terrible for you dealing with two different illnesses that

automatically cause people to judge you. You mentioned the problem

with the assumptions of drug abuse involved with hepatitis and then

you have the assumptions of alcohol abuse with your pancreatitis.

It's incredibly sad that people are so narrow-minded.

Thank you, again, for taking the time to explain things to me!

Suzanne

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