Cunningham tests for PITANDS?

[GraceUnderPressure]

My DH & I have some more questions!

 

#1: Can you all tell us if Dr. Cunningham's tests are entirely focused on strep acquired autoimmunity or can they also help determine autoimmunity if it was induced by other microbes?

 

#2: Also, is it correct that Zoloft would be a first line of treatment even if a child is positively diagnosed with PANDAS? Is it true that most PANDAS articles and protocols recommend that as the first line of treatment before moving on to other strategies?

Is it following Swedo's or any of the PANDAS dr's protocol to only try immunotherapy if there is a positive diagnosis AND the Zoloft didn't work?

 

I found a PubMed article that showed SSRI's can reduce inflammation & have a positive effect on the immune system, but I am wondering if this is directly due to the the drugs themselves or actually because of serotonin's effects on the immune system? I am still concerned, among other things, that a drug which chronically increases serotonin in the synapses will trigger the feedback response that tells the endocrine system to produce less at a time when the body needs more - potentially improving the problem in the short term while worsening it in the long term.

 

 

~Grace

[Kayanne]

#1 - yes, Dr. C has stated that lyme can also cause an elevated Cam K II score

 

#2 - NO....SSRI's are helpful for some PANDAS children. However, this is the problem we PANDAS parents have...doctors want to treat the symptoms when we know the cause. This is post-infectious autoimmunity causing brain inflammation. So, the first line of treatment is to clear the infection and then try to help with inflammation and reset or reign in the immune system. IMHO the first line treatment is antibiotics, then steroids/IVIG/Plasmapheresis

 

Tread very carefully with SSRI's and PANDAS...if they work, it is usually in smaller doses. If you have not added in an SSRI yet, remember that the extreme waxing and waning that some Classic PANDAS (as described by Swedo) can be more easily dismissed as traditional OCD because if your child improves in the 6-8 weeks from an episode...how will you know what was the cause of the improvement? SSRI's or the receeding of autoantibodies?

 

I don't know enough about the long-term effects of SSRI's to comment on the rest.

[Megs_Mom]

Our daughter has PITAND/PANDAS with a high ANA score (speckled), and a PANDAS range CamK & high Anti-lygan. Negative strep titers. Her specialists read of this information is that an autoimmune/inflamatory process is taking place, that clearly corresponds with severe sudden onset OCD. What the exact cause is, remains a question, but she had enough clues to be treated (successfully, 98%) for infection/inflamation based neuropsychiatric illness. If we ever figure out cause, maybe we can get rid of the last 2%.... But I'll take what we got!

[Fixit]

My DH & I have some more questions!

 

#1: Can you all tell us if Dr. Cunningham's tests are entirely focused on strep acquired autoimmunity or can they also help determine autoimmunity if it was induced by other microbes?

 

#2: Also, is it correct that Zoloft would be a first line of treatment even if a child is positively diagnosed with PANDAS? Is it true that most PANDAS articles and protocols recommend that as the first line of treatment before moving on to other strategies?

Is it following Swedo's or any of the PANDAS dr's protocol to only try immunotherapy if there is a positive diagnosis AND the Zoloft didn't work?

 

I found a PubMed article that showed SSRI's can reduce inflammation & have a positive effect on the immune system, but I am wondering if this is directly due to the the drugs themselves or actually because of serotonin's effects on the immune system? I am still concerned, among other things, that a drug which chronically increases serotonin in the synapses will trigger the feedback response that tells the endocrine system to produce less at a time when the body needs more - potentially improving the problem in the short term while worsening it in the long term.

 

 

~Grace

 

From personal experience with DS...i would say that the camk is not solely for strep...

reason...his last onset i am 99.9 % certain was from myco p...

 

next reason...as he got a bit better...with exerciseses...maybe including gfcf diet and 3 months of taurine...he was at his worst this last spring..from allergies...and the movements i described and showed to doc l she thought some to be Chorea movements.

 

i cannot say we have had any known infections since his onset april 09...i think it marks an inflamation/or autoimmune response..

[saidie10]

#2: Also, is it correct that Zoloft would be a first line of treatment even if a child is positively diagnosed with PANDAS? Is it true that most PANDAS articles and protocols recommend that as the first line of treatment before moving on to other strategies?

Is it following Swedo's or any of the PANDAS dr's protocol to only try immunotherapy if there is a positive diagnosis AND the Zoloft didn't work?

 

Hi Grace, we have had success on a VERY LOW dose of zoloft. I hated to put DS7 on it but the OCD issues he was having were heart wrenching and terrifying to watch him go through. According to the Neurologist we were seeing at the time that was the best protocol for him even if we were looking at a PANDAS dx. I know there are definitely differing feelings about SSRI's and believe me we HATED to put DS on it but it truly was best for him. We will wean him off 4-6 wks post IVIG if everything else is going well (tics reduced or gone; anxiety reduced or gone; rages reduced or gone, etc.)

 

Give me a ring anytime!

 

Cindy