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..
