My son was on Ritalin (methylphenidate) high dose for 5 yrs.
One year on Tofranil (antidepressant)
and just over one year on Clonidine.

The side effects became unbearable and we chose another path.

This choice boils down to each family.

It would be nice if the drugs we had today were less problematic.
But the truth is that they aren't.

I think parents should consider if using a drug that causes diabetes is worth what they are using it for. (atypical antipsychotics). SSRIs have a black box warning for suicide now for children.

No one here has ALL the answers, but some of us have been thru quite a bit with heavy duty RX medications for children.
I know from experience AND training what they can do, and what they can't do.

There is one medical alternative and that is Dr. Amen.
At least he does scans to show what is happening in the brain, and gives the drugs based on that:
http://www.amenclinics.com/
He has an excellent book out on ADHD... And one called Change Your Brain, Change Your Life. Our library has both.
Dr. Amen has over the years accepted Fish oil and essential fats and Bcomplex as part of his treatment regimen!
If you want medical verification... check his books out of the library or make an appointment.
He appears on PBS pledge weeks frequently with abbreviated versions of this treatments. Watch your local PBS channel and perhaps you can catch him. (I've seen him 3 times this year alone). He is a wonderful compassionate speaker.

Best wishes.

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

Just a little note about antibiotics... I'll try to keep this one brief.

With my son's diagnosis from age 5 to 10 of Sydenham's Chorea, the Penicillin was prescribed to actually PREVENT further Strep. infections which might damage his heart, so in that case we were prepared to follow the Neurologist's treatment schedule because it was a matter of keeping very serious bouts of Rheumatic Fever at bay. Something that can be deadly.

I was actually mortified at the time, knowing he'd be having to take it till he was 21 years old. I was very glad when they found that his heart was actually in good shape and the diagnosis was changed. By that time he had developed other issues besides the tics/movements. Interestingly his hand writing totally deteriorated... I just saw that mentioned in one of the other sites I posted earlier regarding PANDAS symptoms.

If PANDAS involves an autoimmune reaction, then I still can't understand the use of long term antibiotic treatments or how that can help. I can understand keeping vigilant and making sure there are no untreated Strep. infections, but I can't understand how antibiotics would actually affect the autoimmune reaction itself.

anyway... just more thoughts.

PANDAS info http://webpediatrics.com/pandas.html

and

http://www.pubmedcentral.nih.gov/art...medid=18495013

The Dr. psych did say he has Aspergers based on diagnostic criteria. He feels all the meds he is currently on are good and helpful. Would like to see him on ADHD meds also eventually. Psychiatrist said Aspergers kids are ususally on three to four meds for the various symptoms. Right now the Celexa at 20 mg is helping his moods and compulsions. He is not as stuck on ideas and doesn't continuously harp on things. He is still somewhat difficult to get along with but this may just be him. I notice he argues alot with people.


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.
[

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