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Hi! My 10 yr old daughter has been diagnosed with Sydenham's. When we initially went to the dr. I thought we were dealing w/ ADD or ADHD. Then the twisting movements started followed by limited or no use of her right arm and right leg. We have had her tested for strep, mono, lupus, mycoplasma pnuemonia and everything comes back negative. She has had 2 MRI's. THe second one has much more detail to it and we will get the results of that July 30th. So at this point in time, we have no specific cause that brought this on.
I am completely amazed at the emotional toll that this has taken on my daughter. She cannot handle too many people at a time or be in a place where there is a lot of activity. We are already contemplating what to do about school that starts in 6 weeks.
Her neurologist started her on Respirdal and that seems to be helping with the movement problems and doesn't seem to sedate her. However, I'm not sure what to do about her emotional state. Any suggestions?
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Hi Sherry! I can't answer your questions about SC, but I wanted to reply because I'm from OK as well. I'm really having some interesting weather right now! Were you able to get your daughter's diagnosis in the state? I had to travel all the way to Minnesota. My neurologist here is good as a general neurologist, but I have something a little more rare than SC. I hope you can find something to help with her emotions! I wish I could answer questions about medications. But as for school, if you and your daughter ever consider home schooling, you can contact me because I've been home schooled almost all my life and I have lots of home school contacts in OK. Welcome to We Move, and best of luck! Chloe
Posts: 133 | From: southern US | Registered: Nov 2007
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Thanks for the reply Chloe. We did get her diagnosis here in Tulsa, Ok from a pediatric neurologist.
I am a meeting set up with her school principal to share what our daughter's problems are and see if we can make sure we are all on the same page. She will be in 5th grade and it is a tough year with testing and all.
Posts: 5 | From: Oklahoma | Registered: Jun 2008
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Oh that's a good idea; from what I gather the schools are usually pretty helpful when it comes to helping students work through illnesses and disabilities. Does your neurologist happen to be Dr. Seigler?
Posts: 133 | From: southern US | Registered: Nov 2007
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No, it's Dr. Morgan. We've been very pleased with his bedside manner and willingness to take time and explain all the medical stuff in plain English.
I was also considering finding a nutritionist. Have you had any experience or know anyone that changing eating habits has helped?
Posts: 5 | From: Oklahoma | Registered: Jun 2008
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quote:Originally posted by Sherry in OK: Hi! My 10 yr old daughter has been diagnosed with Sydenham's. When we initially went to the dr. I thought we were dealing w/ ADD or ADHD. Then the twisting movements started followed by limited or no use of her right arm and right leg. We have had her tested for strep, mono, lupus, mycoplasma pnuemonia and everything comes back negative. She has had 2 MRI's. THe second one has much more detail to it and we will get the results of that July 30th. So at this point in time, we have no specific cause that brought this on.
I am completely amazed at the emotional toll that this has taken on my daughter. She cannot handle too many people at a time or be in a place where there is a lot of activity. We are already contemplating what to do about school that starts in 6 weeks.
Her neurologist started her on Respirdal and that seems to be helping with the movement problems and doesn't seem to sedate her. However, I'm not sure what to do about her emotional state. Any suggestions?
Thanks, Sherry
Posts: 3 | From: usa | Registered: Aug 2008
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my 11 year old daughter has sc diagnosed in july we did not want to try antipsychotic meds such as zyprexa orap or haldol we chose depakote sprinkles and have noticed signficant improvement after three weeks on the regimen this is seizure med with less side effects than the other meds mentioned.
Posts: 3 | From: usa | Registered: Aug 2008
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Iam also from OK.I thought I would tell my story it might incourage you. I am a 68 year old woman. I was 10 years old when I was told I had Huntingtons Chorea but found out two 11 years ago when I had two value replaced that I had sydenham's. I had three different spells of it. I was hospitalized two different times a month first time and three weeks the next. I lived a pretty normal life married had three children and doing pretty good. Thank God. I hope this mkes you feel better. If you have any questions I will reply.
Posts: 2 | Registered: Jan 2009
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Hey I'm Clapper I have a degree in Youth Work and a Graduate Diploma in Disability Studies. I had ARF and SC in 1963. I'm 56 and I know things have changed since I was in Hospital. The fact that a Neurologist can get paid big money without having to deal with anxious parents hasn't changed and that's who you need to see. When I was recovering in a Preston Hospital North Shields,I was introduced to 3 young girls and their families who where in the same position as I had been. They were only in the hospital for a day or 2 before they put the mobile curtains round there beds and I never saw them again. It still makes me sad. I was given Phenobarbital and kept quiet, even the nurse's where reluctant to talk with me. Everyone thought I was on the way out. They stopped my brothers from visiting me because when it was time for them to go we said "goodbye". I had Mitral Regurgitation and my heart needed to grow bigger and the muscle needed to thicken up. The whole ward gave me a standing ovation when I left "it was a very hard time for me in the winter of 1963". I went to a Rehabilitation hospital for another 4 months. 20 years on the other side of the world I saw a heart specialist in Melbourne in 1976 he told me not to waste my life working. As the surgical path was not a good option me at 23. I've had my new Mitral Valve for 7 years.
Posts: 7 | From: Caregie Victoria Australia | Registered: Jul 2009
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