SSRI's and PANDAS OCD

[Megs_Mom]

I have a friend that wonders if his child is PANDAS but he is overseas and no access to any PANDAS docs or testing. His child recently refused ERP therapy. He was on Luvox for a few weeks, but showed suicidal tendencies, and is now going off. I have heard before that SSRI's can cause issues for PANDAS kids. Is there any info on this? I'll take both documented (research) and antidotal! If there are no studies, is there a rationale about why SSRI's might not work? Has anyone been successful with an SSRI, and if so, which one?

 

Also, are there any studies that he could use to convince a doctor to try the steriod burst? Thanks - Susan (Meg's mom)

[dcmom]

Suggest to your friend to check out Dr K's website (webpediatrics.com- I think). I believe he states on there that SSRI's are not helpful for pandas. I also believe he may have some overseas contacts- she might want to email him and ask for a referral, or if he would speak to her doctor. Even trying a long course of antibiotics should be helpful, right?

[thereishope]

Have your friend go to orpha.net. It is a portal for orphan diseases and PANDAS is listed. It is European based. On there, you might be able to access research studies being done in Europe and get names of docs from that. You may be able to contact the website too for info if there anyone near her.

 

I have heard of others who did not have a good experience w/ SSRI's and PANDAS.

[EAMom]

I don't know of any steroid studies. Perhaps if they point out to their doc that the pred. dose (like Dr. K uses it, as a diagnostic tool) is no more than they would give to treat a child with poison ivy, then what is the big risk/downside in trying it?

 

PANDAS kids are more sensitive to SSRI's. Here is an article: http://www.primarypsychiatry.com/aspx/arti...x?articleid=561

 

I think the medical profession has assumed PANDAS OCD should be treated like regular OCD (with CBT and ssri's) but there aren't studies (that I am aware of...the double blind kind) to show that these treatments are actually effective for PANDAS. On the other hand, the Swedo studies show that prophylactic anti-biotics/IVIG/PEX are effective against PANDAS yet docs still feel this is "contraversial" and "unproven" b/c nobody is running additional studies to confirm these findings. How frustrating. Since the underlying cause of PANDAS ocd is different from regular OCD, I don't understand why they would assume the same treatments would be effective. This is like treating "chest pain" with the same treatment regardless of whether the underlying cause was a heart attack, an ulcer, or a bullet.

 

In addition, the medical community acts like keeping a PANDAS child on antibiotics is risky and dangerous while at the same time, they freely dispense the pysch. drugs (complete with black box warnings).

 

That said, our PANDAS dd is on 10mg/day of Prozac. Here's the scoop:

 

When her PANDAS/eating disorder was diagnosed, our dd was initially placed on Lexapro which eventually resulted in akathesia/aggression/dilated pupils. When we tried to wean her off the Lexapro our dd's anorexia (to the point where she would eat 2 pieces of bread in a 24 hour period, no other food, maybe some water) returned in full-force (this was b-4 we discovered azith., although we were on other antibiotics) so we transitioned her to a low dose of Prozac. The prozac seemed to help. Not fully (like the Azith/advil) but enough that we weren't experiencing the scary rapid weight loss. (Note: non-pandas anorexia nervosa is not supposed to be helped by SSRI's.) We've left her on the Prozac (10mg/day) b/c frankly, after the ###### of our dd's anorexia, we were reluctant to change any variables. Now that she' had IVIG, we hope to eventually get her off of it...but do want to mess around with changing meds while we're still seeing what the IVIG does.