posted
I was diagnosed in August '06 with SC. I had a high fever and sore throat the week my symptoms began but my ASO titers were never positive. I have severe neck and left shoulder tremors to the point that I developed some small hairline fractures of the spine. I also had "piano" tremors in my right hand for about a year until it contracted (though not completely...with force it can be opened). The pain is almost unbearable some days.
My doctors keep telling me that they think this will go away, but once we crossed the two year mark, even they seem to doubt the SC diagnosis. I have been treated with everything from the extremes of haldol and valium to the current use of botox which is very effective for about 2 out of 3 months. But my body is starting to become tolerant of the botox (which the doctors warned me about). At my last appointment they started talking about other treatments including tetrabenazine which is used for HC. Anyone heard of its effects????? My doctors warned me that it can cause very severe depression...great huh. They have also started discussing Deep Brain Stimulation surgery. This kinda scares me but people keep telling me how effective it is?
Does anyone have any ideas or advice? I am seeing two neurologists in Indianapolis who are wonderful, but even they are running out of ideas. I have been pretty positive, but I am running out of steam. I am actually getting ready to start medical school this fall and am worrying about how I am going to get through it all.
Thanks for any ideas, Emily
Posts: 6 | Registered: Jan 2009
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Like you I am a person without a definitive diagnosis or a positive test. I have an "immune mediated hyperkinetic movement disorder-Choreaform". Simply put I have Chorea that is somehow related to an immune system problem. Like you I have taken a pharmacy full of different kinds of medications with no positive effects.
I responded well to large doses of Prednisone combined with Cytoxin several years ago. But when my white blood count went too low, we had to stop the treatment. After a very sudden and serious worsening of my movments (in addition to Chorea, I had Myoclonic jerks that would literally lift me off the bed) they put me on CellCept plus Prednisone and I have done very very well.
I don't know if they have ruled out immune system problems but it may be worth a look.
Kirby V. Nielsen Delaware, Ohio
-------------------- Kirby V. Nielsen Delaware, Ohio Posts: 12 | From: Columbus, Ohio | Registered: Jan 2005
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posted
I see you are from Oh. We live in Akron/Canton area of OH. My 7 yr old son has PANDAS chorea movements. I have had a lot of trouble getting him treatment in OH. I read you have an immune chorea disorder also. Sorry to hear you aren't feeling to well.
His was brought on by strep and now he has a host of symptoms that are psychological and neurological. They want to use psych drugs Abilify and Celexa plus antibiotics. I would like to get him IVIG or steroids or PEX to try to reboot his immune system. What kind of help have you gotten and from which Dr's. We have seen a ton of Dr's that don't seem to want to get involved with his treatment. I am looking at going to Maryland to see a neurologist who treats SC and RF and PANDAS named Dr. Latimer. I just wish there was someone local. I am saddened by our medical resources in OH. We have been to Cleveland Clinic, University Rainbow, and Akron Childrens and no Dr's seems to want to look into this further. Thanks.
quote:Originally posted by everlyone: Emily,
Like you I am a person without a definitive diagnosis or a positive test. I have an "immune mediated hyperkinetic movement disorder-Choreaform". Simply put I have Chorea that is somehow related to an immune system problem. Like you I have taken a pharmacy full of different kinds of medications with no positive effects.
I responded well to large doses of Prednisone combined with Cytoxin several years ago. But when my white blood count went too low, we had to stop the treatment. After a very sudden and serious worsening of my movments (in addition to Chorea, I had Myoclonic jerks that would literally lift me off the bed) they put me on CellCept plus Prednisone and I have done very very well.
I don't know if they have ruled out immune system problems but it may be worth a look.
posted
Michele, I am sorry to hear about your son. One of my major missions in the past few months is to give a voice for children who have these symptoms. I can only imagine going through something like this at such a young age.
I understand your frustration with doctors. My experience has shown that when doctors can not give answers they tend to dismiss you. But, don't give up hope. You may have to find a specialist outside of the area, but if you have a good primary care doctor or a neurologist at least willing and open to knew ideas you may not have to physically go to the specialist as much. Just keep searching for people and answers. Several years ago, back when the doctors still thought I had SC, I poured through the scientific literature (I am a science/med student). One of the names that came up repeatedly in the literature was Madeleine W Cunningham. I did some googling and emailed her. Through some of those channels she connected me with doctors at the National Institute of Health and doctors within my state who are "experts." Although I did not follow up with most of them beyond email they provided some good perspective (including being the firsts to say that it was probably not SC).
I know you son has PANDAS and there is some debate as to the differences between PANDAS and SC, but do some research (even if just doing a scholarly search on PANDAS.) See if there are some researchers who pop up on a regular basis. Although they are more from the science perspective, they may have connections to more local physicians.
Trust me, I know it is frustrating at times, but just keep searching for a doctor who is willing to not give up! Even if they don't have a perfect answer, having support from a doctor makes the difference.
Good luck, Emily
Posts: 6 | Registered: Jan 2009
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I am also a research junkie. I can not believe some of these guys on research articles for PANDAS from Cleveland Clinic and Cincinnati don't really want to step out of the box and treat these PANDAS SC kids. I come into appointments prepared with articles and they dismiss me because they don't want to bother to read the literature. The last neuro at Univ, was recommended from TSA. She told me we don''t see anything here and if Dr. Berger the immunologist didn't take this on and he is a leading immunologist in the counrty then it can't be. These Dr's just write you off because they don't get it. I emailed Dr. Singh who is on alot of immune autism research today. Also we are doing a Cummingham blood study right now. I have hooked up with Leckman, Latimer and Kovosavick. Maybe someone somewhere out there will take a look and try to treat this before he continues to have more brain damage. I ttok him to Florida Dr. Murphy who works with S. Sweedo. She helped diagnose but can' treat him out of state. i need to get Azith but Dr's don't like antibiotics. So frustrating. I am searching and will not give up. I do think there is a tie on the SC and PANDAS and autoimmune issues but time will tell. For now we will keep seeing Dr's and I hope my son will not be scarred by his childhood that was spent looking for a Dr. who wanted to do their job!
Posts: 6 | Registered: Feb 2009
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Wow! Sounds like you've made it even further than I have! Haha. Well, as frustrating as it is right now, just take faith that you are being an awesome mother right now in searching for answers. Your son will not be scarred from this but he will be changed and hopefully for the better. I was a pre-med student already when all of this started, but now that I am getting ready to start medical school I have to say this disease was the best thing that could have ever happened when it comes to my career as a future physician. I have learned so much about how to treat patients...and how NOT to treat patients. Weather your son ends up working in medicine or not, he will one day when he is older take from his experiences and it will make him a stronger person. I have been fortunate to be able to see these lessons as I am learning them (though I often pray to God that I am thankful for the lessons, but I have learned I all I need right now and am done with this).
As far as "brain damage" unless his condition is progressing, the good news is from what I can tell all of the damage is done at the initial onset of the autoimmune attack following the strep. Not to say time isn't important, but he shouldn't hopefully be getting worse (with the exception of secondary issues like I have muscular-skeletal issues now because of the long term tremors.)
One idea for you, I know this seems counterinuitive, but until you find an expert, I have found residents at University hospitals to have been the most willing to search for answers and research new ideas. One resident found some kind of blood test taht is similar to an ASO titer, but tests for ANY antigen that has to potiential to bind to glucosamine on the basal ganglia. However, the last I heard the only place that was doing this test was overseas and my doctor couldnt figure out how to get me involved with them. But this is just an example of how youth and freshness can bring a spirit of wanting to try things over the dismissal of older doctors. Let me know if you find anybody with ideas...I am still looking for my "expert" too.
Oh and I am going to give acupuncture a try starting tomorrow...I'll let you know how it goes. This is far outside of my normal comfort zone, but at this point I am willing to try anything.
Posts: 6 | Registered: Jan 2009
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My DS (12) was diagnosed SC at age seven. He didn't have a sore throat, just mild fever, fleeting rash, gait change, joint pains, chorea, tics, OCD, moodiness, etc. Doctors had no idea what was going on. Eventually we stumbled on a pediatrician who recognized what was going on, and referred him to a ped infectious disease specialist.
He started improving on powerful antibiotics. The strep had been untreated so long, he needed IVIG to alleviate symptoms. Eventually his titers returned to normal. He's doing great--academic honors, music, sports, etc. (even sleep-away camp, w/much parent trepidation!). So far, so good. He's been mostly asymptomatic the past four years. The symptoms do return if he has a recurrent infection, but haven't been allowed to exacerbate again like that first year. We monitor closely and race him into the doctor at first signs. He gets a daily prophylactic to prevent GABHS.
His SC response may be genetic. There's RF on both sides of the family (grandparents, cousins, etc.) and heart complications.
It was so fortunate to find experts. His ped infectious disease doctor doesn't claim to be an SC or tic expert, but knows how to treat resistant and systemic GABHS. That approach has worked to knock out my son's tics/OCD, too. He's not needed neuro meds. After infections, we use some supplements and watch diet for several months, just to avoid tic triggers until his titers return to normal.
I'm sorry to read about your challenges. College years are tough enough. Your notes are so supportive...WTG for staying optimistic. One of your earlier posts mentioned Indiana. I'm in your area and would gladly recommend an excellent practice. My son sees a ped specialist, but the practice mostly serves adults. Please let me know if you're still searching for help.
All the best! Boychild's Mom
-------------------- Best regards, Boychild's Mom Posts: 2 | From: USA | Registered: Jun 2009
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Hi all. Im from the uk, i became ill with rumatic fever as a to child age 2, dont remember much about the illness but have lived with sc ever since and im now 43.Has a chid medication of all kinds were tryed and none had any affect none controled my movements(which are very anoying to say the least). About 4 yr ago i went to see another movement specialist who gave me tetrabenezine this was the worst time of my life, as the dose was increased i began to become very ill with side effects the doctors called "IATROGENIC PARKINSONISM", just like haveing parkinsons but thank god when realised and the tablets stoped the parkinsons went away, because altho sc is not nice to live with every day i would rather have this than that!! I am now seeing yet another movement specilist who has told me there is not a lot of tablets that work 2 control the movements apart from tetrabenezine which i would not touch again, rather live forever with sc. Im due to have another brain scan but has to be under sedation due to the fact i cant keep still to have it done normal..Think after 40 year i have learned to accept how i am altho i would love the movements to stop or be at a minimum, but my problem is sleep and getting off to sleep,relaxing enough to go asleep is a real pain to which i am trying to get my gp to understand,she as given me zoplicone but only every other night,so i sleep the nights i take them the nights i dont i spend on the sofa on my own. Maybe they do think they become addictive but surely how can a wanting to sleep be a bad thing??? Has anybody else been living with sc for as long, and have you tryed anything that worked for you?? I would love to hear from you, maybe the drugs in the us are different to the uk?? Look forward to hearing. Sorry my message is long but hope you take time to read. Thanks
Posts: 2 | From: uk | Registered: Jul 2009
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How are you doing. (had to do this twice, forgot to check e-mail notification.)
Posts: 23 | From: chicagoland | Registered: Oct 2009
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Hi there. Im not doing 2 bad, but still no change from my last post, thinking now it will be with me forever, just live with it. How about you??
Posts: 2 | From: uk | Registered: Jul 2009
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