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I have not posted on this board in quit some time but check in often and am amazed at how much knowledge i gain everytime. i have a question. i have 2 boys with PANDAS. one is 17 and was not diagnoised until age 14. we went the whole tourettes, add, ocd, ODO ... just about everything until finally he went through a hellish experience with an undetected strep infection which caused a huge increase in tics and ocd. All this happening finally got the drs. attention and after 1 yr on antibiotics he is so much better.

 

my question is mainly for my youngest son. he is 9 and has always been ticcish. both my kids had the testing done by Dr. Cunningham 2 years ago and to my surprise my 9 yr olds numbers were higher then my 15. ( the were in the Chorea catagory) at the time of the test he was not having any symptons. He has been doing great until the first of october he got strep ( well i think he had strep the test was neg) but he started having tics. kinda like a whole body shiver like he was cold. He was fine one day and the next this was going on. After two week and still complaining of a sore throat we went back and guess what the strep was positive this time. so.... only got a 10 day course of antibiotics and things seem to improve. 3 days after completing the antibiotics he still had a sore throat so back to the dr. again. while in the waiting room he started having arm and leg reflexes or spasms ( i guess tics) his right arm would shoot out very strong and fast and then he would stiffin his leg out. He told me it was very painful. The strep was negative but the dr agreed to give another course of antibiotics since he was ticcing so much.

 

two weeks have passed and he is doing much better he is getting anxious at school and he tells me it is because he does not want the kids to see him tic. So needless to say he has missed a lot of school lately.

 

His dr. called yesterday and was surprised he was still ticcing. I only see it 2-3 times a day but the dr. is concerned because of the type of movement it is and how infrequent it is. She does not feel like it is a chorea type and it really is not what she calls a typical tic. She wants blood work done and a neuro appt. etc.

 

Have any of you all seen this type of movement??? she has me worried. ( like i dont worrry enought already) sorry for the long rambling post. i just need some answers and dont want to put my son through a bunch of tests if this dr. is just not getting it. She is not a PANDAS spcialist per say but very familiar with it and sees several kids with Pandas, pans and lyme. i guess this is why i am worried. any help is greatly apprecialed. i live in North Carolina so if any of you know of a neuro and PANDAS experience i would so appreciate a name. thanks so so much for any info. i really need to start breathing again soon.

Robin

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Sorry for this quick reply but look up Saint Vitus Dance also known as Sydenham's Chorea. My son had similiar movements Dr had me video when I could. The movements could be result of strep is what Dr. told us.

hi kathy, i do believe the movements are from a recent strep. dr just wants to rule out others things because of the type of movment he is having. does this make sense? Did your son have sudden arm and leg jerks?

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I will try to write more later but my son's tics are helped with alpha lipoic acid and other detox agents. His tics are driven by too many toxins released by dying bacteria (strep or lyme in his case). So lots of focus on detox and anti-inflammatories helps them dissipate (not instantly but over a few weeks).

 

Over the years, my son has had dramatic jerks that could be described as mycolonus or tardive dyskinesia. They were always related to his body fighting infection and not being able to shed the resulting toxins/oxidative stress efficiently.

 

I'd be asking for longer term abx but also looking into detox supplements (milk thistle, alpha lipoic acid, resveratrol, vitamin c, bentonite clay, activated charcoal - to name a few options). Magnesium supplements also help my son.

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There are two tests I'd consider - one is his HLA-DR gene (this site explains why http://www.survivingmold.com/diagnosis/lab-tests)

 

You might also like these links on the biotoxin pathway (same info in both but I find the second one more helpful) http://www.survivingmold.com/diagnosis/the-biotoxin-pathway and http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html

 

The second test is his MTHFR gene, which can indicate a problem with methylation, a type of metabolism in your body that directly effects how well your body can create certain neurotransmitters (like dopamine - a big player in tics) and whether any logjams might be interfering with the detox system. It can be tested at any commercial lab but here's one lab's info on the test http://www.questdiagnostics.com/testcenter/BUOrderInfo.action?tc=36165&labCode=NEL (test number may vary depending on your location, NY has a specic test # for this test. So this is posted only as an example).

 

I'm in the process of editing an article on MTHFR and why it can be important. I'll post the link when it's available, probably early next week.

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There are two tests I'd consider - one is his HLA-DR gene (this site explains why http://www.survivingmold.com/diagnosis/lab-tests)

 

You might also like these links on the biotoxin pathway (same info in both but I find the second one more helpful) http://www.survivingmold.com/diagnosis/the-biotoxin-pathway and http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html

 

The second test is his MTHFR gene, which can indicate a problem with methylation, a type of metabolism in your body that directly effects how well your body can create certain neurotransmitters (like dopamine - a big player in tics) and whether any logjams might be interfering with the detox system. It can be tested at any commercial lab but here's one lab's info on the test http://www.questdiagnostics.com/testcenter/BUOrderInfo.action?tc=36165&labCode=NEL (test number may vary depending on your location, NY has a specic test # for this test. So this is posted only as an example).

 

I'm in the process of editing an article on MTHFR and why it can be important. I'll post the link when it's available, probably early next week.

 

thanks so much for the information.

Edited by Rowens1214
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