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Interesting PANDAS case study


Guest pandas16
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http://www.hindawi.com/journals/np/2009/768398/

 

Worth a read, long but interesting...

 

Thank you for posting this. I cannot say that I fully understand it, but I think I understand the direction it is taking. It is unusual to have a journal report on a single case in such detail - yet that is EXACTY what we need to really understand what is happening and how each of our children is unique.

 

I can recall my own son doing VERY poorly on biaxin (clarithromycin) as a preschooler (10 years ago) and I remember asking both the allergist and the ENT if biaxin had pschiatric side effects (which of course resulted in them looking at me like I was crazy). I know many kids on this forum do very well with biaxin - especially for mycoplasma, but my son has not. This may explain that to some extent.

 

I do plan to share this with a new neuropsychiatrist we found. Hoping he can decode this and apply as needed!

 

Thanks!

Edited by kimballot
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where exactly is glycine and where can we get it?

 

I had the same question, so I did a little research. Glycine is an amino acid and a neurotransmitter that is a cohort of glutamate working with the NMDA receptors. I guess it's used as a sweetener and a food enhancer for humans and can be found in protein drinks and antacids, as well as a number of non-consumable items.

 

Apparently, Source Naturals sells a glycine supplement!

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This is great. Thank so much, pandas16 for putting this out there. I need some new avenues for one of my children. I cannot get our doc to test for NMDA-- the docs says my daughter would be getting progressively worse (as far as motor skills- walking, eating, etc).

 

d-cycloserine; glycine... thanks!

We did have some success with riluzole-- so maybe this is all on the right track for her.

 

Anybody know where or how I can get a doctor who is willing to do this?

I suppose I need to get her to a place (mentally) where she will take medicine. none of it does any good unless you swallow it -_-

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I really felt like it was clearly promising. We did see an noticeable, quantifiable improvement. This was almost a year ago. She took for a week-- so not a total fair assessment, but then she refused it. we have a HUGE problem with her not taking medicine.

 

fairly soon, we will be seeking more professional help (possibly an admission) & she will most likely take any medicine they give her. I will be asking them to restart the riluzole.

Of course, as an admittedly desperate parent, I want to see hope and promise in every new attempt to help my kids. We have tried lots and lots of things, but riluzole is one I will definitely ask for when she takes medicine again.

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If I remember correctly, there was a mom on the Tourettes forum here that gave glycine to her son successfully. I hope one of the people on that board sees this post and chimes in if they remember it. I don't have time now but I will do a search to try to find the mom's name later today if needed.

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Yes!! Nancy I was going to add that although it says in the article NMDAR,, so whats the AR?

 

 

Heres another interesting article http://www.tampabay.com/news/health/usf-study-seeks-to-turn-existing-drug-into-new-childhood-ocd-treatment/1195048

 

 

D-cycloserine is a partial agonist at the glycine receptor, and has been shown to have cognition-enhancing properties for models of Parkinsons disease in primates.[5] Wikipedia..

 

I don't know what the "R" on the end of "NMDA" is unless it's just for "receptor"?

 

As for d-cycloserine and the USF study, I've been following that as best I can. Trick is getting d-cycloserine in the low treatment doses USF is using; it's typically produced in a much higher dosage for TB treatment, so you'd have to arrange for filling a prescription at a compounding or medical facility pharmacy, it appears. If anyone has success with that, please let me know!

 

As for glycine itself, I'm thinking about trying it. We're currently weaning off abx, and I think we could use whatever edge we can get! Would love to hear some real-life stories of glycine use and impact!

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