Sudden, drastic loss of motor skills

[ddkins]

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

[flyin2006]

One more comment...then I promise I am done. When did Shane develop these "tics"?  Many 'tics" are outgrown.  Also, was he looked into for ADD?
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.

[ddkins]

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

[joe west]

This sounds pretty serious. Why don't you post this situation to one of these doctors and let them try to help? I don't know what I'd be doing now if I were in those parents' situation. Someone needs to find something out and quickly. You said that they ruled out too much copper in his system, right? I know that too much can cause a multitude of conditions. Just do a search online and read about all the symptoms of excessive levels of copper in the body.

My heart goes out to you all. I pray that the doctors arrive at a diagnosis and treatment soon.

Mrs.

[medco]

this situation is highly unusual. ask the parents if he had psychiatric symptoms before he had problems with motor control - particularly anxiety, depression, or fits of rage. also ask if had odd sensations of the skin - i.e. like the skin has a stickiness feeling or a pins and needles sensation.

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.

[medco]

also, and may i add that this treatment is still in the experimental stages, but it may be possible to prolong life in people with vCJD using quinicrine or pentosan polysulphate, the latter is more commonly used. the hospital may have to obtain in from britain

[medco]

sorry, one more thing (as you can see i have an interest in vCJD). one of the leading prion specialists in the world is Dr. Neil Cashman. He works as a physician and scientist at the University of British Columbia in Vancouver, Canada. Here is a number where you may be able to reach him:

Tel
604 822-2135
604 222-3607

E-mail
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.