Help~do you need an OCD diagnosis before IVIG?

[PANDASmcnuggetsw/fry/coke]

Hi friends,

 

Today we saw an allergist/immunologist who was willing to listen and learn and actually help us in getting to the bottom of what troubles our daughter. He signed off on the Igenex lymes testing, gave me an rx for zith and said he could do IVIG if we need to get that far (AFTER he reads up on all of the PANDAS research and IVIG protocol). He also said he would chat with the close-minded pediatrician about being more open minded about the possibility of PANDAS. So a pretty good day!

 

Here's my question: he said we should get her some neuro psych testing to get an OCD diagnosis so that will help get IVIG covered by insurance if we get that far. Do you all do this? Is it neccesary? I hate to get that label put on her unless it really is neccesary. Also, Dr k has already diagnosed her with PANDAS via phone. Do we need more?

 

Thanks so much for listening!

 

PANDAS McNuggets w/fry/coke

[peglem]

I think that most PANDAS IVIGs are coded under an umbrella dx- immune deficiency or autoimmune encephalitis, because IVIG is considered by most insurance companies to be experimental for PANDAS. I think technically, an OCD dx is required for a PANDAS diagnosis, but only because that was part of Swedo's criteria for inclusion in her studies (she's a psychiatrist, no?) and that is what has morphed into diagnostic criteria for PANDAS. We have never gotten an actual OCD dx, but OCD behaviors were are observed and noted as part of the PANDAS dx.

I don't know if that actually answered your question? But, now I'm curious as to how many of our kids did get official OCD dx before PANDAS dx.

[nevergiveup]

I would be concerned about an ocd diagnosis from a psych. I went this route, and the docs later used this against us saying, pandas is sudden onset with remission, regular ocd waxes and wanes and is in someways always present. Well lots of pandas kids have left over ocd after an attack that never truly disappears so the psych doc was wrong. And if the psych doc tells ur doc its not pandas then this could eliminate treatment options. Some parents contacted DR Leckman from yale to help confirm the sudden onset. Or in Florida Tanya Murphy also gets that Pandas lingers ocd in between attacks. I cannot say any shrink in my home town has ever seen pandas nor can differentiate from ocd, so be careful this may be a doc whom is trying to politely direct you out of immunology. Peglem is right, insurance companies do not offer up ivig for ocd symptoms, so this is why I am second guessing ur docs motives.

[tpotter]

I would not get the OCD dx. Insurance companies will tell you that it is denied, because OCD is not treated with IVIG...it's treated with CBT/ERP and meds. I agree with the previous posts, that you are better off getting IVIG with code of some kind of immune disorder and/or autoimmune encephalitis (not encephalopathy.)

 

We were denied IVIG, because the above codes were not used (we're working on that,) but I wouldn't get sucked into a psych dx of any kind if trying to get IVIG.

[PANDASmcnuggetsw/fry/coke]

THANKS everyone... excellent advice!!!!

You are all wonderful. :-)

 

PANDASMcNuggets w/fry/coke