Ivig or plasma

[cfamily]

Hi Group,

 

No improvement, now starting to bite during her exacerbations in the evening. The Psychiatrist says if she's not better she wants to do the plasma procedure and our NJ PA wants to do the ivig.

 

Should we wait and get results from mycopl infection, and a complete medical workup (immunology)? We do have history of tick bites on me when I was pregnant and dd 2 years ago.

 

We are fighting everyday to get the doctors to move. Its hard to think that at the end of her last year she was being tested for the gifted program in school and now we can barely keep her in school for a few hours.

 

It kills us that she knows whats happening to her and she can't control it, she thinks her friends don't like her, and she's embarrassed yet she is going to try to go to school tomorrow. She is so brave.

 

We miss our dd.

 

What do you guys think about these procedures before we've ruled out other things? Buster?

Edited January 3, 2011 by cfamily

[PhillyPA]

Get all the blood work done and then move forward as quickly as possible. I can't remember - did she try a month long steroid taper yet?

 

Get the Lyme test too. Have your PA or pediatrician order the tests. I believe that your child's case screams auto-immune. The vast majority of Lyme disease does not present the same way as auto-immune disease. Some Lyme cases do - but it is not the common presentation that I know of in PA. Being from good old Pennsylvania, I know lots of people and children who have had Lyme disease. Remember - get your child tested for Lyme disease but move on if the tests is negative.

 

CHOP thought your child had Pandas - that is huge. Did CHOP do a Lyme test too. Did they do a spinal to check for Lyme?

 

The best advice I can give you is to move quickly. Get help fast.