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Hi all,

My ins. is denying ivig for Pandas yet covers PEX for pandas as a 1st line treatment!! Seems to me, PEX would be more costly (hospital stay etc) am I right about this?? And we all know insurance co.s have cost as the bottom line, not which treatment is better! Also, does most or all PEX get followed up with ivig anyway, I though this was the case, what are the chances of PEX alone providing relief? One last qusetion, I'd imagine it would be difficult to find a Dr willing to do ivig for Pandas unless they had experience. I believe Dr E. does, are there any more? Thanks for responses.

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I read that IVIG is more expensive due to the blood product, but that was assuming that the PEX was done on an out patient basis. Some stupid analysis that I found to help insurance companies deny IVIG. It also talked about a short supply of IVIG.

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I read that IVIG is more expensive due to the blood product, but that was assuming that the PEX was done on an out patient basis. Some stupid analysis that I found to help insurance companies deny IVIG. It also talked about a short supply of IVIG.

Pex was done in patient. Ivig cost about $1000for every 10 lbs, for us anyway.

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DS showed improvement after IVIG that lasted 6 weeks. IVIG was repeated without any improvement.

 

DD showed no Improvement after IVIG - actually maybe a little worse after IVIG

 

Both had PEX with amazing improvement. I would do PEX again. My only regret is we didn't do it earlier.

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DS showed improvement after IVIG that lasted 6 weeks. IVIG was repeated without any improvement.

 

DD showed no Improvement after IVIG - actually maybe a little worse after IVIG

 

Both had PEX with amazing improvement. I would do PEX again. My only regret is we didn't do it earlier.

 

How long has it been since they both had PEX? Was this with Dr. L?

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Dr L & E,

I think they "save" it for the most severe kids. I think this because I have come across many of their patients, but only a handful who have had pex. However, maybe other kids get better with abx & ivig, maybe it is a $ issue, maybe parents are hesitant, since it is so invasive.

I feel it was so helpful for my kids and I would do it again or for another child in a second if Dr L thought they needed it.

It did not totally "fix" my kids, but it was clearly the single, most helpful intervention, besides the initial steroid dosing.

I hope you can figure this out, best wishes to you.

Edited by PowPow
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DS showed improvement after IVIG that lasted 6 weeks. IVIG was repeated without any improvement.

 

DD showed no Improvement after IVIG - actually maybe a little worse after IVIG

 

Both had PEX with amazing improvement. I would do PEX again. My only regret is we didn't do it earlier.

 

How long has it been since they both had PEX? Was this with Dr. L?

Both had PEX at Georgetown in Dec and dr L was prescribing dr. After 1 month dd was sleeping in a bed (slept in floor for years), changing clothes everyday (hadn't done so for about a year) and complete disappearance of rages.

 

Ds had significant decrease in tics, was participating in family activities (before it was hard to get him out of his room) and was the happiest I've seen him his entire life (he's 13)

 

My one word of caution would be returning to school. Dd9 returned to school after 8 weeks post pex and lost significant progress within 1 week. The change was so dramatic we have removed her from school for the rest of the year and are looking at an online school for next year.

 

Feel free to pm me if you want more info.

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