Re: post IVIG CNS problems...e, anybody have info? HELP

[Guest guest]

Sue,

 

I know this isnt much due to the fact that I am not that knowledgable about the

suject. But I do know about hospitals and one thing I learned early on with

getting so sick is that if you dont like your childs treatment plan you

can ask for the patient advocate there in the hospital. Also in any hospital you

are entitled to a consultation and second opinion from not only an attending but

a resident as well. You have the right to demand that your child be treated or

at least followed by specialists if you feel as though he is not getting the

best care possible.

 

I will keep your family and e especially in my prayers.

 

Heidi

From: Sue Bordelon <sudubo@...>

Subject: post IVIG CNS problems...e, anybody have info? HELP

shwachmansyndrome , neutropenia ,

Date: Sunday, March 7, 2010, 5:01 PM

 

Hi, e is still in the hospital from the IVIG reaction, asceptic

meningitis,  he feels terrible,  still has fever, but lower now...but he has

the worsening cental nervous symptoms coming back.....he has bad photophobia,

can't tolerate any lights, and vomiting again...and ataxia...... .This had all

improved after they gave him the IV Decadron Fri night....

 

So we're asking, why can't ya'll give him another dose of IV Decadron to help

with some of the brain swelling?  These Bozos are saying, No we better

not.....we're not familiar with that!  

 

So I wanna give them some articles about how steroids are used for post IVIG

side effects like this....

 

Please if anyone has any articles, or info I can print or direct them to, please

send me the link or article...I' m so worried about e!  It's just a stupid

hospitalist in charge of him, not consulting anyone!      Sue 

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