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Posted

We were on Abilify and celexa and clonidine when we took ours. I already sent the numbers.

If your child was on SSRIs (such as Prozac) when the Cunningham test was run, can you IM me your anti-D1 and anti-D2 numbers?

 

Thanks,

 

Buster

Posted

Buster,

 

I don't know what you mean by IM but I will post them here.

 

DD17 pandas severe OCD on Zoloft 250mg (very high dose, started last December and kept increasing dose as it was not getting her OCD under control to final dose of 250mg daily by June).

 

Cunningham test done mid August.

 

Anti-Dopaimie 1 2 hours 2000

Anti-Dopamine 2 2 hours 16000

Anti-Lysoganglioside 2hours 640

Anti-Tubulin 2hours 2000

CamK 156.

 

Hope this helps

What are you thinking?

 

Ellie

Posted

Hi Ellie,

 

Thanks for the note and numbers. What was on my mind is whether the dopamine levels would be inhibited by fluoxetine levels in the blood serum. I've sent a note off to Cunningham's lab to ask. I was curious -- nothing more than that. It's still not known what all the numbers mean and what you have to control for. I was wondering if perhaps she'll have to control for SSRIs. In addition, I was curious how many others had maintained their kids on SSRIs or were using CBT or ERP for treatment of OCD.

 

There have been studies indicating that PANDAS kids are more sensitive to SSRIs and I'm wondering if that is because of the combined impact of the SSRI with the anti-D1 or anti-D2. So at this point, this is just me being curious -- nothing more. Our own daughter became activated (akathesia) on higher doses of another SSRI but due to a latent social anxiety we haven't taken her off the SSRI entirely.

 

Best regards,

 

Buster

 

 

Buster,

 

What are you thinking?

 

Ellie

Posted

I was curious how many others had maintained their kids on SSRIs or were using CBT or ERP for treatment of OCD.

 

There have been studies indicating that PANDAS kids are more sensitive to SSRIs and I'm wondering if that is because of the combined impact of the SSRI with the anti-D1 or anti-D2. So at this point, this is just me being curious -- nothing more. Our own daughter became activated (akathesia) on higher doses of another SSRI but due to a latent social anxiety we haven't taken her off the SSRI entirely.

 

Best regards,

 

Buster

 

 

We have also used CBT (started almost a year before she had surgery), and found that it wasn't until her Pandas started getting better after the surgery, that she could even think about using any of the skills (despite high doses of Zoloft). We didn't have any bad effects from the Zoloft or CBT, but got nowhere. Not until we had her tonsils out, then high doses of Advil (to deal with the pain of the healing from the surgery) that we started to see clarity in her eyes and decrease in mental fogginess and decrease in the obsessive thoughts. It was pretty impressive. Like many other families that were led astray (sp?) into the mental health arm of the health care system, she was no better off with SSRI and weekly counselling. Let me know what Dr Cunningham thinks. It would make sense that those two values borderline when all the other values in the abnormally high levels.

 

Ellie

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