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Old 04-22-2009, 04:06 PM
Lara Lara is offline
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Join Date: Sep 2006
Posts: 10,984
15 yr Member
Lara Lara is offline
Legendary
 
Join Date: Sep 2006
Posts: 10,984
15 yr Member
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I'm very sorry, but I'm not up-to-date with very recent investigations into the PANDAS hypothesis. My son was diagnosed with something called Sydenham's Chorea (also autoimmune and also a movement disorder which occurs in some people after GABHS infection and associated rheumatic fever as well) prior to his subsequent differential diagnoses including Asperger's Syndrome and TS.

He also had (has) problems with attention difficulties, anxiety and obsessive compulsive behaviours. His treatment for the SC was long-term penicillin. That's just what they did in those days. Fortunately we were able to find a different specialist who overturned the SC diagnosis and we went from there. The Penicillin was ceased.

During that time my son was prescribed Risperidone/Risperdal although his first medication was Clonidine. If a medication is going to be used than Clonidine used to be the starting point, although we found it caused more problems than it was worth. Some of the atypical neuroleptics like Risperdal (I don't know if Abilify is the same) tend to hit a wall and appear to lose their effectiveness over time. I have a paper about that here somewhere, but I can't seem to find it this moment.

EDITED to add: I found it.
http://neurotalk.psychcentral.com/post141777-23.html
The Journal of Neuroscience, March 14, 2007, 27(11):2979-2986; doi:10.1523/JNEUROSCI.5416-06.2007
"Breakthrough" Dopamine Supersensitivity during Ongoing Antipsychotic Treatment Leads to Treatment Failure over Time
Anne-Noël Samaha, Philip Seeman, Jane Stewart, Heshmat Rajabi, and Shitij Kapur


Our own doctor's advice was pretty rigid... lowest possible dose to get the maximum benefit and also he disliked using more than one medication at a time. As it turned out, my son is on autism spectrum and many children on autism spectrum are very sensitive to medications... well, he was for sure.

I am not anti medications. I'm not actually anti anything. What I do know is what a crisis situation (and many of them) is like and it's not a fun place to be, so I totally feel for you and the situation you are in right now trying to find help for your child.

You will find there is conflicting information around regarding PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococci) however, I have known people who have given anecdotal reports that their children did well on azithromycin. I'm not really sure if that is still used today.

The doctor you saw in Florida... well, she's the one who would know. If there was a treatment for PANDAS that was proven to work, she would have told you about it. Much of the anecdotal evidence about PANDAS that you will read about online has not been proven. That's not to say that some children haven't been helped and you're sure to come across people who swear by this or swear by that, but I am one of these people who needs to see the evidence.

I've gotta stop now. Sorry I've written so much. I'm almost out of internet time here but really wanted to write to you.

Don't lose hope. Please look into other interventions regarding behaviour and the other difficulties your son is facing.

As I said in earlier post, if your son is actually found to be on autism spectrum, then that will lead you in a totally different direction and with the right advice and interventions put in place that are helpful for him, then you will most likely find that he settles down really well. It must be a very difficult time for him

http://intramural.nimh.nih.gov/pdn/web.htm
PANDAS - General Information
Pediatrics & Developmental Neuropsychiatry Branch, NIMH

http://intramural.nimh.nih.gov/pdn/r...blications.htm
Recent Publications
Pediatrics & Developmental Neuropsychiatry Branch, NIMH

http://www.tourettesyndrome.net/pandas_overview.htm
Overview of PANDAS from TS "Plus" website.

http://www.tourettesyndrome.net/behavior.htm
Information Section: Behaviour Introduction

http://www.tourettesyndrome.net/sitemap.htm
Site Map and On-Site Search Tool - TS "Plus" website.

Adding on another link for information purposes:
http://intramural.nimh.nih.gov/pdn/pubs/pub-9.pdf
Antibiotic Prophylaxis with Azithromycin or Penicillin for Childhood-Onset Neuropsychiatric Disorders
Lisa A. Snider, Lorraine Lougee, Marcia Slattery, Paul Grant, and Susan E. Swedo

Last edited by Lara; 04-22-2009 at 05:20 PM. Reason: ADDED LINKs
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