PANDAS? 15?

[nicklemama]

He was on lamictal which was prescribed after his intermittent explosive disorder dx. He was diagnosed w/ Aspergers and bipolar II a week before he was dx'd w/ PANDAS. He had been having difficulty for a yr. He was never given any meds for them. The neuropsych recommended we add risperdal to the lamictal but we never got that far. He started abx for PANDAS and we started seeing improvements. In pretty short order, it became apparent he was neither Aspergers nor bipolar II(something I was already very skeptical of). His social skills, while improved, did not fully return until after IVIG.

 

Currently, he's on prophylactic abx and vitamins/supplements.

[momtobpkid]

I do not know if it is the garlic or the Diflucan or being GFCFSF for a week now or what, but Brandon has been the perfect child, nearly, all day today and last night. He even hugged me. My 15 year old hugged me, is smiling, is laughing, and all appropriately. And he is doing the dishes the first time asked! Now I am worried about does he have to have a die off reaction for the yeast????

[Alex]

We have Tricare Standard and it has been great. They have covered everything for PANDAS we have done, and we've done it all. Not sure if the HMO type of Tricare will be as easy.

 

Just heard again from one of the big PANDAS docs that those having the most success in the NIMH IVIG study are those who previously had tonsils/adenoids out.

 

The articles posted below I still think are very interesting and compelling. Reader comments and doctor replies to the first article very interesting as well. Also heard though the grapevine that Both Dr. Leckman and Dr. Cunningham believe in T & A for strep triggered PANDAS, although haven't heard it first hand.

 

If you do decide to go that route, make sure strong antibiotics leading up to, during and after surgery to prevent a flare. Dr. T I know has a specefic antibiotic protocol he likes to use for T& A.

 

Maybe the main point is if you have strep triggered PANDAS and you are getting constant exposure from your own tonsils, or frequent exposure, as from a family member who is a carrier, how could you ever expect to get better?

 

http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain

http://www.psychologytoday.com/blog/attention-please/201107/evil-pandas-part-ii-adult-affliction-treatment

 

This last link is to a study on children with frequent strep throat and high ASO titers who were given T & A. After one year, 90% had ASO's fall to the normal range with a drastic reduction in strep throat frequency. Link is just to abstract. I've got the study if anyone is interested,

http://www.springerlink.com/content/h379182709163650/

 

Happy holidays and Merry Christmas to all. Alex

[momtobpkid]

We have Tricare Standard and it has been great. They have covered everything for PANDAS we have done, and we've done it all. Not sure if the HMO type of Tricare will be as easy.

 

Just heard again from one of the big PANDAS docs that those having the most success in the NIMH IVIG study are those who previously had tonsils/adenoids out.

 

The articles posted below I still think are very interesting and compelling. Reader comments and doctor replies to the first article very interesting as well. Also heard though the grapevine that Both Dr. Leckman and Dr. Cunningham believe in T & A for strep triggered PANDAS, although haven't heard it first hand.

 

If you do decide to go that route, make sure strong antibiotics leading up to, during and after surgery to prevent a flare. Dr. T I know has a specefic antibiotic protocol he likes to use for T& A.

 

Maybe the main point is if you have strep triggered PANDAS and you are getting constant exposure from your own tonsils, or frequent exposure, as from a family member who is a carrier, how could you ever expect to get better?

 

http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain

http://www.psychologytoday.com/blog/attention-please/201107/evil-pandas-part-ii-adult-affliction-treatment

 

This last link is to a study on children with frequent strep throat and high ASO titers who were given T & A. After one year, 90% had ASO's fall to the normal range with a drastic reduction in strep throat frequency. Link is just to abstract. I've got the study if anyone is interested,

http://www.springerlink.com/content/h379182709163650/

 

Happy holidays and Merry Christmas to all. Alex

 

Brandon had a t&A when he was 2. So they even covered the IV stuff? I get worried, especially since Brandon does not have tics or OCD (OCD when manic), he is not textbook anything, aside from meeting adult criteria BP1 when he was 7 with additional sxs.