Sydenhams Chorea
Discussion
About six weeks ago my 10 year old son started having uncontrolled muscle movements accompanied with slurred speech. He was blue lighted into the local hospital where he was given a CT scan of his brain , this did not show any problems but he was admitted for tests. A clear MRI and many blood tests later and a diagnosis of Sydenhams Chorea was given. My wife and I had never heard of it ,it would appear it is on the rise in the UK although still very rare. I wondered if any fellow PH members have had any experience with this lousy illness.
SK
SK
My son had it aged about 8, I don't want to alarm you, but I did not get the same child back, it was an absoulte nightmare for years.
He had to have six months off school, and then only went back part time for another six months. The lasting effect was that he tires very easily, (17 now and still does.)and could not cope with 6 weeks of schooling, he always got into trouble in the last few weeks of the term for being rude. The school were really unhelpful and wouldn't give him any allowances. I downloaded loads from the internet to give to the school as it is quite an unknown disease. In the end I used to keep him off school, I could always tell when he would have a bad day, even after sleeping for 13 hours he would get up and have red rings around his eys, and he would spend the majority of the day in bed asleep.
I'm pretty sure he had a reoccurence of it when he was about 10, which knocked him back a bit. Your son will have to have penicillian until he is 21, but as the tongue cannot be controlled easily my son found it impossible to swallow a tiny pill, you can get it in a powder form and just add water to a batch that lasts a week. (Doesn't taste very nice.)
Thankfully there was no damage to his heart, but it will be something they test after a few years which an echo.
May find useful info here:
http://www.wemove.org/syd/
Good luck and I hope he makes a full recovery.
He had to have six months off school, and then only went back part time for another six months. The lasting effect was that he tires very easily, (17 now and still does.)and could not cope with 6 weeks of schooling, he always got into trouble in the last few weeks of the term for being rude. The school were really unhelpful and wouldn't give him any allowances. I downloaded loads from the internet to give to the school as it is quite an unknown disease. In the end I used to keep him off school, I could always tell when he would have a bad day, even after sleeping for 13 hours he would get up and have red rings around his eys, and he would spend the majority of the day in bed asleep.
I'm pretty sure he had a reoccurence of it when he was about 10, which knocked him back a bit. Your son will have to have penicillian until he is 21, but as the tongue cannot be controlled easily my son found it impossible to swallow a tiny pill, you can get it in a powder form and just add water to a batch that lasts a week. (Doesn't taste very nice.)
Thankfully there was no damage to his heart, but it will be something they test after a few years which an echo.
May find useful info here:
http://www.wemove.org/syd/
Good luck and I hope he makes a full recovery.
This is what I posted on the we move site, 4 years ago, when it was a bit fresher in my head.
posted April 12, 2005 06:16
My son was diagnosed 4 years ago when he was 8,we noticed that he was not using his right arm at the dinner table, he said that he couldn't use it, and i remember bending his wrist back and forth saying "Come on it's not broken!" Other symtoms included twitching about and facial grimaces, on this particular night we also noticed a slight slur in his speech. In all other aspects he appeared fine and I was not duly worried. I happened to play Bridge that night and one opponent was a doctor who asked how the children were,I casually mentioned my sons symtoms and did i think i ought to take him to a doctor or did he have any Ideas. His reply really worried me, he told me not to bother with my local hospital but to go straight to St Georges hospital as it had the best neurological resources in the area. By this time my son couldn't walk properly and I ended up carrying him to the accident and emergency department, he was admitted on arrival and he rapidly deteriorated to the extent of him not being able to control his tongue, his speech was really slurred and he was dribbling, he was virtually paralysed on the right side whilst the left was thrashing around and he had no co-ordination at all.Amazingly all of the symptoms disappear whilst the patient is asleep. There were about 5 doctors observing him and doing tests which involved my son touching his nose then the doctors finger, which was moved left or right (Couldn't do.)and doing it with his eyes closed,(Not a chance.)walking in a straight line (Forget it.)The doctors all took notes and went. One doctor a South African stayed and said that the movements resembled Sydenham's Chorea which was rife in South Africa but as it was unheard of in the UK it probably wasn't the case. The following week involved a lumber puncture, an MRI scan and numerous blood tests. My son was now "The child" that other mothers told their children not to stare at.We were told that he had Rhematic fever previous to his admittance although he did not show any symptoms, this resulted in the Sydenhams Chorea. Eventually we left hospital after a week of being dosed up with penicillian, my son had to have complete bed rest for about four months, then he was allowed to go back to school but only in the mornings,the use of his right hand had returned but his writing was illegible but the left couldn't be used. He wasn't allowed to do sport for a year.
Occasionally we would need to go shopping in the town with my other three older children, on nearly every occasion it would result in my son shouting out insults at me begging people to help him as I was not his mother and I was abducting him. Nobody questioned me, the look of sheer horror on the other childrens faces must of alerted passers by, that I was in fact the owner of this monstrous child. Previously my son was a delightful child, placid, easygoing and good natured. When we got home he would apologise for his behaviour he didn't know why he said those things and promise not to do it again. Although he is now much better he is not the same, I don't know whether this is because he is approaching the teenage years or it is a legacy of the Chorea. On one visit to the doctors he asked the nurse to call the police as he didn't want to be at the doctor's and I was holding him against his will, The nurse and I then had to restrain him as he was kicking me so hard. When the doctor asked me how I was, I broke down in tears. I asked for a second opinion as I was sure that there was more to my son's outbursts than Sydenhams Chorea, he told me that it was all part of it and hopefully he would grow out of it.
My son sees the doctor at the hospital every two years now as he hasn't shown any sympoms in the last year.He still has to take penicillan until he is 20ish. His heart is ok there have been no lasting affects. I was also given Haloperidol for him, but i know two people that have taken this, one sadly comitted suicide and the other felt it added to their depression. I discussed my reasons for not giving it to my son along with the endless list of side effects, The drug would only put him in a good mood, it would not help in any other way. I have decided not to give it to him. Towards the end of the school half term I guarantee that I will get a call from his teacher to say he is on report for his behaviour and rudeness towards her and other teachers. I try not make excuses for him but I don't think that she fully understands the implications of Chorea. After the half term break when he rests, a different child goes back to school and all is well for about four or five weeks then I get the call.
I wish you all the best for your son and your family and hopefully your son will recover fully.
posted April 12, 2005 06:16
My son was diagnosed 4 years ago when he was 8,we noticed that he was not using his right arm at the dinner table, he said that he couldn't use it, and i remember bending his wrist back and forth saying "Come on it's not broken!" Other symtoms included twitching about and facial grimaces, on this particular night we also noticed a slight slur in his speech. In all other aspects he appeared fine and I was not duly worried. I happened to play Bridge that night and one opponent was a doctor who asked how the children were,I casually mentioned my sons symtoms and did i think i ought to take him to a doctor or did he have any Ideas. His reply really worried me, he told me not to bother with my local hospital but to go straight to St Georges hospital as it had the best neurological resources in the area. By this time my son couldn't walk properly and I ended up carrying him to the accident and emergency department, he was admitted on arrival and he rapidly deteriorated to the extent of him not being able to control his tongue, his speech was really slurred and he was dribbling, he was virtually paralysed on the right side whilst the left was thrashing around and he had no co-ordination at all.Amazingly all of the symptoms disappear whilst the patient is asleep. There were about 5 doctors observing him and doing tests which involved my son touching his nose then the doctors finger, which was moved left or right (Couldn't do.)and doing it with his eyes closed,(Not a chance.)walking in a straight line (Forget it.)The doctors all took notes and went. One doctor a South African stayed and said that the movements resembled Sydenham's Chorea which was rife in South Africa but as it was unheard of in the UK it probably wasn't the case. The following week involved a lumber puncture, an MRI scan and numerous blood tests. My son was now "The child" that other mothers told their children not to stare at.We were told that he had Rhematic fever previous to his admittance although he did not show any symptoms, this resulted in the Sydenhams Chorea. Eventually we left hospital after a week of being dosed up with penicillian, my son had to have complete bed rest for about four months, then he was allowed to go back to school but only in the mornings,the use of his right hand had returned but his writing was illegible but the left couldn't be used. He wasn't allowed to do sport for a year.
Occasionally we would need to go shopping in the town with my other three older children, on nearly every occasion it would result in my son shouting out insults at me begging people to help him as I was not his mother and I was abducting him. Nobody questioned me, the look of sheer horror on the other childrens faces must of alerted passers by, that I was in fact the owner of this monstrous child. Previously my son was a delightful child, placid, easygoing and good natured. When we got home he would apologise for his behaviour he didn't know why he said those things and promise not to do it again. Although he is now much better he is not the same, I don't know whether this is because he is approaching the teenage years or it is a legacy of the Chorea. On one visit to the doctors he asked the nurse to call the police as he didn't want to be at the doctor's and I was holding him against his will, The nurse and I then had to restrain him as he was kicking me so hard. When the doctor asked me how I was, I broke down in tears. I asked for a second opinion as I was sure that there was more to my son's outbursts than Sydenhams Chorea, he told me that it was all part of it and hopefully he would grow out of it.
My son sees the doctor at the hospital every two years now as he hasn't shown any sympoms in the last year.He still has to take penicillan until he is 20ish. His heart is ok there have been no lasting affects. I was also given Haloperidol for him, but i know two people that have taken this, one sadly comitted suicide and the other felt it added to their depression. I discussed my reasons for not giving it to my son along with the endless list of side effects, The drug would only put him in a good mood, it would not help in any other way. I have decided not to give it to him. Towards the end of the school half term I guarantee that I will get a call from his teacher to say he is on report for his behaviour and rudeness towards her and other teachers. I try not make excuses for him but I don't think that she fully understands the implications of Chorea. After the half term break when he rests, a different child goes back to school and all is well for about four or five weeks then I get the call.
I wish you all the best for your son and your family and hopefully your son will recover fully.
SMAK said:
About six weeks ago my 10 year old son started having uncontrolled muscle movements accompanied with slurred speech. He was blue lighted into the local hospital where he was given a CT scan of his brain , this did not show any problems but he was admitted for tests. A clear MRI and many blood tests later and a diagnosis of Sydenhams Chorea was given. My wife and I had never heard of it ,it would appear it is on the rise in the UK although still very rare. I wondered if any fellow PH members have had any experience with this lousy illness.
SK
I've never had any experience of it, but I wanted to say that I hope he recovers well. All the best to all of you.SK
Katherine
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