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jordanawillis

Sydenham's Chorea/PANDA

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I have only just found this website, as I did a search on PANDA after seeing a show on the discovery channel.

My son was diagnosed with Sydneham's Chorea, untreated strep infection, about a year ago. I.m spending a good part of the time trying to convince the doctors that his body jerking, facial tics emotional outburst are not due to an emotional upset but that something else is in play. My son, age 6, was a very happy content child until a year ago. Healthy eater, very active, very friendly, which surprised us when his mood swings went violent and verbally abusive. I dismissed this as a possible growth spurt and maybe the nerves were having a surge of testosterone..However when his body tremors continued to get worse to the point he couldnt walk and became bed ridden, I knew something else was wrong. All strep tests, over a three month time came back negative but the body tremors and facial tics continued. I noticed his hand writing and speech were terribly affected to the point that he could not construct a sentence. I finally was able to catch this all on video and show the doctors as previous visits he showed very mild movement as he was able to control his body movements by keeping active, or curling his toes inside his shoes. I never knew the extent until I saw the inside and all the interior padding was gone.

Never once did anyone mention antibiotics nor IVIG it just happened that he had an eye infection and the antibiotics they gave stopped ALL the movements. However once he finished the treatment all the shakes, tics, and aggression came back.. For the past 6 months we have taken a wait and see approach..Movements are getting less violent however I'm using antibiotics when he flares to see if this does help. After 3 months I have taken this back to my doctor who tells me to continue treatment when he flares. My doctor still thinks its an emotional issue as SC can sometimes have emotional triggers and will cure itself??

 

Now Im not a big believer in alternative medicine and still skeptical but Im desperate and would anything, dance around praying to the GOD of choice in order to find a solution/cure...Off to the homeopathy it was.. I have found somethings that do help. Vitamin C Complex B, magnesuim maleate, Probiotics minimum 23 billion, turmerc surpreme, grapefruit extract.. What I found even more helpful were his evening baths in epsom salt. I have yet to figure out if its the warm w ater, floating or all of it together that eases his tremors, it eases his body

 

Would anyone be able to tell me if zithomax or omicef is the preferred antibiotic in treatment of PANDA?

Has anyone had IVIG for their child? Is this something that is covered? Do you need a referral for an infusion center?

Does anyone have a doctor they would recommend in the Denver Co area?

 

I applaud each one of you who have taken the time to share your stories and hardships and advice. If anyone can help shed some light or share a similar experience I would be grateful..

 

 

 

 

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Hi Jordana!!!!

 

"My doctor still thinks its an emotional issue as SC can sometimes have emotional triggers and will cure itself??"

 

I would say this is BS....to put it politely. Main stream medicine will not address these issues.....other than antipsychotics or other brain altering issues. Some may throw abx at it to see what happens. You really need to get to a good integrative doc that is Pandas/Pans friendly.

 

I recommend Zithromax. Here is a video we found early and wanted to try it. Integrative Doc did this and we have been very happy. It discusses zithromax and it's properties of immune modulation. Her name is Susan Schulman. Use is usually 60-90 days straight then a tapering of zithromax......we did M-W-F for about 30-60 days. I cannot stress enough about probiotics roughly 12 hours separating probiotics and antibiotics. Sacchromyces Boulardi at the same time as the antibiotics as this can prevent yeast overgrowth.....which will be another set of problems.

 

http://www.thedoctorsvideos.com/search/detailed/1/?sort=addate&search_type=&search_id=schulman

 

Dr Nancy Ohara----good summary video.

 

Dr Kendall Stewart-----very indepth video about Methylation. Part 1 of 5......over an hour long. Def worth the watch.

 

Your child sounds a lot like ours. We had infections and vaccinations implicated in addition to vitamin and mineral deficiencies found. Things can, do and will get better. If you are seeing improvements after abx or after high fever, these should be good signs to watch for.

I really recommend getting to someone with a comprehensive knowledge of Pandas/Pans.....immune function that can test for and treat infections, vitamin and mineral deficiencies, gut issues, etc........it is a whole approach to healing.

 

I would ask....at 6 years old....when did he get his 60 month MMR booster??? How much after did the tics start???

 

Should you have any questions....please PM or reach out.

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Switch doctors. Syndeham's chorea is a well established illness accepted by mainstream medicine. It is also a major criteria for diagnosis of rheumatic fever. Rheumatic fever requires antibiotics til 18 or 21 depending on who you ask.

 

If your child did in fact have rheumatic fever, he needs to be on antibiotics til he is at least 18. I think you need a second opinion.

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Uh- isn't IVIG covered for Sydenham's chorea?

 

I would consider switching docs- but maybe don't be so fast to ditch the SC diagnosis. If you are diagnosed as pandas you likely will pay your own way for IVIG.

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just to second what Mom23boys says: it would be NEGLIGENT on the part of your dr not to put a child with Syndham's Chorea on abx. mention the word negligent and a law suit if he does not give you long term abx.

In your place, I would look into IVIG as well as dcmom suggests

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