PANDAS and titer levels

[P_Mom]

Hello EVERYONE,

I though this was an important thing to post as it talks about titer levels and how they do NOT need to be elevated for PANDAS. I know a lot of people and doctors are stuck on this idea and I think it is unfortunate because a lot of our kids are being misdiagnosed and not properly treated. Anyway, this comes straight from the NIMH and the PANDAS study by Susan Swedo in the 90's.

 

http://intramural.nimh.nih.gov/pdn/web.htm

 

After you click on the link, go to recent publications and scroll down to the publication that talks about the study of IVIG and PEX for PANDAS children. On the second page, second column, it talks about how the kids were at baseline before the study started. All children were diagnosed with PANDAS based on sudden start OR sudden worsening of symptoms, etc., SOME children had high titers, some had NEGATIVE titers, all were very ill at time of entry, even the ones with negative titers. The height or even absence of titers had no relation to the favorable outcome of threatment for these kids! Also, PANDAS is a spectrum disorder, some kids having primary Tic disorders, some primary OCD, or some both, it does not always included OCD.

 

I hope everyone is doing well.

 

I just really thought this was important and I hope this will clear things up for some people.

 

Kelly

[bmom]

Thanks Kelly, This came just in time as I just got my sons latest titer count-again normal range. I will give the article to his doc!!!

[michele]

I just spoke to a mom today who was quickly referred to an immunologist after daughter had first episode of severe ocd. The immunologist had no issue with putting her on antibiotics amoxil twice a day even though strep was negative. The strep antibodies did show signs of a past strep infection though. He reassured her antibiotics can't hurt. She was still suffereing from night terrors and OCD so went to a neurologist who put her on clonidine. She is doing much better now. News must be traveling out there in the medical community on the PANDAS strep connection. She started her on CBT and in the matter of months from her first episode is on the road to recovery. She mentioned Dr's wanting to stop the antibiotics at the end of the month and retest her for strep. I would be a bit nervous to try that when she has made such improvements.

 

I still say IVIG and plasma exchange is risky and should only be tried in the most severe cases when nothing else is helping. Not enough research has shown its effectiveness. If your child shows improvements with antibiotics and SSRI's would you try it? Is it a one time cure and then all the symptoms are gone forever? In that case it might be worth the risk. Has anyone here had experience where it cured their kids?

 

Hello EVERYONE,

I though this was an important thing to post as it talks about titer levels and how they do NOT need to be elevated for PANDAS. I know a lot of people and doctors are stuck on this idea and I think it is unfortunate because a lot of our kids are being misdiagnosed and not properly treated. Anyway, this comes straight from the NIMH and the PANDAS study by Susan Swedo in the 90's.

 

http://intramural.nimh.nih.gov/pdn/web.htm

 

After you click on the link, go to recent publications and scroll down to the publication that talks about the study of IVIG and PEX for PANDAS children. On the second page, second column, it talks about how the kids were at baseline before the study started. All children were diagnosed with PANDAS based on sudden start OR sudden worsening of symptoms, etc., SOME children had high titers, some had NEGATIVE titers, all were very ill at time of entry, even the ones with negative titers. The height or even absence of titers had no relation to the favorable outcome of threatment for these kids! Also, PANDAS is a spectrum disorder, some kids having primary Tic disorders, some primary OCD, or some both, it does not always included OCD.

 

I hope everyone is doing well.

 

I just really thought this was important and I hope this will clear things up for some people.

 

Kelly

[bmom]

Michelle,

Is her daughter still on the Clonidine? Did she feel it helped and did she have any side effects?

[michele]

It is helping her fall sleep and stay asleep and not be freaked out by things she was obsessed on. She is still collecting some trash. She said she is a bit tired. I don't know if some symptoms have resolved because of antibiotic, waning or clonidine. Also the CBT has been good so far for the family. She was having some repetitive finger,and toe movements too. Since that was the first episode it will be interesting to see if it resolves, or returns.

M

Michelle,

Is her daughter still on the Clonidine? Did she feel it helped and did she have any side effects?