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Neurology (Expert Forum)
Sudden, drastic loss of motor skills
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Sudden, drastic loss of motor skills
by ddkins, Jun 28, 2007 12:00AM
Shane is a 14 yr old boy whose health is decling rapidly. He has had a "tic" for a few years now. His Pediatric Neurologist said it was pobably Tourette's and put him on Risperdal.
In the last 3-4 weeks, Shane is deteriorating quickly. All of a sudden, he can't control his body. He can't stand up stright, he leans far to te left. His left arm is either accross his chest or above his head. He falls down, bumps into walls, shelves, the refrigerator, etc and hurts himself.
Each day seems worse. Now this very modest young man needs his mom's help in getting dressed, then he needed help geting out of the bathtub, now can't bath himself, and needs help eating because he can't control the movement in his arms.
In the hospital for 2 days, he was on 5 mg ativan which helped very much, but since getting home he has worsened. His Ped. Neuro has done so many tests and is now baffled. His adult Neuro who specializes in movement disorders put him back in the hospital last night.
We've ruled out Tourettes, and Wilson's Disease (elevated copper level). Now the new Neuro is talking about Shane possibly having Staff Infection. This makes no sense to us since he hasn't had any surgeries.
Do these symptoms sound like anything you've seen or could you tell us which direction to turn? I know you can't diagnose, but your help would be appreciated tremendously!
Thank you so much,
Diane
In the last 3-4 weeks, Shane is deteriorating quickly. All of a sudden, he can't control his body. He can't stand up stright, he leans far to te left. His left arm is either accross his chest or above his head. He falls down, bumps into walls, shelves, the refrigerator, etc and hurts himself.
Each day seems worse. Now this very modest young man needs his mom's help in getting dressed, then he needed help geting out of the bathtub, now can't bath himself, and needs help eating because he can't control the movement in his arms.
In the hospital for 2 days, he was on 5 mg ativan which helped very much, but since getting home he has worsened. His Ped. Neuro has done so many tests and is now baffled. His adult Neuro who specializes in movement disorders put him back in the hospital last night.
We've ruled out Tourettes, and Wilson's Disease (elevated copper level). Now the new Neuro is talking about Shane possibly having Staff Infection. This makes no sense to us since he hasn't had any surgeries.
Do these symptoms sound like anything you've seen or could you tell us which direction to turn? I know you can't diagnose, but your help would be appreciated tremendously!
Thank you so much,
Diane
In England, during the height of the epidemic, boys as young as yours were coming down with the disease. They had the very same symptoms and rapidly deteriorated.
Hi,
Thanks for the post. How scary to think Shane has mad cow disease! I sure don't hear that it happens much here, but after reading up on it, some of the symptoms are the same.
I didn't say in my last post tha Shane has had numerous blood tests, cat scan MRIs, lumbar puncture, and an eye test. All of these have been normal except the increased copper in his system, and an EEG showed that he might have a staph infection, but that has now been ruled out.
He is back in the hospital and deteriorating quickly. He is now getting almost no rest - just a few days ago, he wouldn't have the "jerking" while asleep or laying down.
They have increased his Ativan and have moved him into intensive care. They said the reason for the move is because of the high dose of Ativan and they'd like to monitor him on it 24/7. Does that sound realistic?
Thanks!
Diane
Hi,
Thanks for the nice message. Shane has been on Risperdal for over a year and then he started getting worse about 1 year into it. That's the only med he is on.
He is my next door neighbor and best friend's son, so he's like family. My daughter and Shane used to "go together".
He can still talk. He's always had a very smal speech problem, saying a few letters incorrectly when he talks fast.
Thanks for your help!
Diane
ADD and Bipolar often occur together. Perhaps his ADD has been ignored and a far more dramatic Bipolor has been diagnosed. He just seems too young for the far more severe Schizophrenic syndrome. Possible but not probable.
My daughter and I visited Shane yesterday and it about ripped my heart out. He basically acts like ababy, can't do anything himself. His whole body is jerking and he can't control anything. he wets himself now too. The whole time I was there all I could think of was that Shane has had a massive stroke. My grandmother and two uncles have had them, and that is exactly the way SHane looked to me.
I talked to his nurse who was quite nice and gave me some info that he isn't supposed to share without his parent's permission, but he knew that I am very close to them and that they wouldn't miw how upset I was. I told him it looked like Shane has had a stroke, but he said all 3, yes 3 MRIs were clear, as was EVERY test they have done.
His twitching is so bad, they finally put him completely out yesterday for about 6 hours to give his muscles a rest. They said he was using his muscles so much that some chemical was escaping from the muscles and that wasn't good for his kidneys. ,So they had to give him med to counteract that.
I can't even begin to list all the meds they've tried him on now. They said it's hit and miss now, they are just trying everything. They even have given him meds to boose his antibodies to strengthen his immune system and also platelettes. They said they'd try these just in case he has/had an infection that they can't find.
Shane moves all over his bed, gets his IVs and cords all twisted up, can't control a thing and slurs his words.
I don't know how his parents are staying so strong. They are so exhausted and barely leave hsi side. We've been watching their 7 yr old son and helping out there 17 yr old daughter each day while the parents are at the hospital, and then Mom comes home late at night to sleep and spend time with their 2 kids at home in the morning before returning to the hospital. Shane's dad has spent ALL of this time at the hospital, sleeps there, showers there, etc.
I don't know how much longer they can all go on and how long Shane can hang on. This is scaring the heck out of me.
I feel helpless! All I can do is pray and help out with their kids and house. Wish there was something I could do.
Sorry for venting!
Diane
My heart goes out to you all. I pray that the doctors arrive at a diagnosis and treatment soon.
Mrs.
it would also be helpful to to check if he can still see, hear, etc, and if he has problems swallowing.
maybe you should recommend to the doctors that they do a lumbar puncture or tonsil biopsy to check for prion particles on the off chance that he does have vCJD.
an mri will show nothing in people with vCJD, but an abnormal EEG pattern may help in diagnosing vCJD
best of luck.
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604 222-3607
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neil.***@****
because it is such a rare disease, the doctors may not have thought of vCJD as the culprit. perhaps it would be best if you brought it up to them.
Thank you both for your posts. I appreciate your help and concern for Shane.
First, Shane has had some mild to medium anxiety over the past few years, and his "tic" would get worse when he would worry. This was never a very big issue, because his symptoms were very mild at that time.
I'm wondering if the Risperdal is the cause of all of this. He has been off it, but when he first started gettse, they upped the dosage and then he got worse. When stopping it he worsened even more.
Today they put him on valium and another med that I need to get the name of and he is doing a little better. He even sat up in a chair for 10 minutes and tried drawing. He was still jerling but not as badly as usual.
I've been trying not to mention mad cow to his parents because it wounds so crazy, but I think I will in the morning. Maybe it's not too far-fetched.
He has had a lumbar puncture and that was clear as are all of his tests.
You said I should post my questions to a dr. on here to read. That's what I thought I had done. How do I go about posting this correctly?
Thanks so much for your help!
Diane
I forgot to answer your questions:
Shane has had no skin problems or sensations, and he can still see, hear, etc, and he has no problems swallowing.
Thanks again!