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KLJ

IVIG made symptoms worse…will PEX help?

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Great information in the posts above.

 

My youngest d had IVIG and the first time it had a VERY positive effect, then two years later she had IVIG again and this time her symptoms became worse. She then had pex and it helped a great deal. She is much, much better 6 months later.

 

I think asking Dr Elia is a great idea, and/or pursuing additional autoimmune testing to rule out any other identifiable autoimmune issues.

 

I appreciate especially the "Grand Rounds" video posted by PowPow. As parents really need to ask the treating docs to run the tests which might shed light on whether or not there is an identifiable autoimmune basis for the neuropsych issues experienced by our kids.

 

The response to immune modulating treatments is key. Dr. K recommended the "trial" of steroids -- and if there was a reaction THEN IVIG...that made sense 5 years ago to me, and it still makes sense...

 

Our experience has been that both daughters had pex and yes, in our situation it did help.

unfortunaly, out 5 days trial with steroids were a disaster. His tics exploaded up to the level I have never seen before.

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Before our secont IVIG my corespodention with dr. K was great. I wrote only when something was really wrong - worsening, instructions for IVIG - thing like this. I never bothered him with loong mails,any many questions (not that I didn't want to,but, I belived that he is busy, so I was traying to be concrete) and he always answered.

 

and after I told to dr. K that his tics are fully back again even after his 2. IVIG he never answered to my email.I sent another one with the same short question, only few sentences about what to do - he never answered..

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Croatianmum, sorry to hear that you haven't heard back from Dr.K. Maybe try an email with the subject "PLEASE PLEASE RESPOND!!!!!" or something like that.

 

I'm sorry that your son is still struggling. We also did not have great success with our first two IVIGs, but steroids did help my son.

 

How about CellCept? That's what we are trying.

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Croatianmum, sorry to hear that you haven't heard back from Dr.K. Maybe try an email with the subject "PLEASE PLEASE RESPOND!!!!!" or something like that.

 

I'm sorry that your son is still struggling. We also did not have great success with our first two IVIGs, but steroids did help my son.

 

How about CellCept? That's what we are trying.

Hi _anna, how is your sone doing? Do you think the cellcept is helping?

hope things are better--

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We had very good luck with PEX. There was a noticeable improvement by the 2nd treatment. We did it 6x on an outpatient basis when Dr. Elia was still at CHOP. (2x week for 3 weeks). It was the only thing that finally put an end to her symptoms. (She was diagnosed with both Pandas and Sydenham's chorea.) Dr. T was our main neurologist.

 

I would double check the cost.....our insurance covered it, but the bills we received from CHOP were about $63,000 altogether. It was almost $11k per treatment.

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