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

[medco]

it's possible for anxiety to be associated with muscle spasms, but it is less likely to be associated with gait problems and incontinence, particularly to the extent that you are describing. paxil takes 6-8 weeks to work, so it may not have kicked in yet. he could have developed a tolerance for the ativan and that is why it is not effective anymore. again, the ativan has been known to cause coordination/gait problems, so the ativan itself could be a problem. maybe the doctors should switch to another benzodiazepine like klonopin.

if there has been no cognitive decline, then that is a very good sign - lowering the possibility of vCJD. it could be another neurological problem though, but nothing comes to mind. this sounds too extreme to be anxiety, in my opinion. less us know what happens.

[flyin2006]

Hi sweetie,
   So glad to hear from you and any news about Shane. Glad to hear he is at a reputable healthcare facility and being taken quite seriously. Yes, it MUST be the Risperdal,,,causing the TardiveDyskinesia.  It will be interesting to see what the MD on hear has to day.My guess is,minus any treatments i may have looked into, it is probaly a" wait and watch "situation. Iam soooooooooo happy to hear his spirits are good. This gives much hope he was treated with the Risperdal with the greatest hope it would treat bothersome tics and no more.
     You tell Shane, there is much interest in helping him, at his hospital, his friends, and his internet allies. Please continue Ativan or even perhaps an anticonvulsant. My guess is that Shane will much improve in the very near future.And I cannot wait to see what the Cleveland Clinic neurologist has to say. Our best wishes to all of you...plz continue to tell us how things are going.

[ddkins]

Yesterday, the Neurologists said that there is nothing neurologically wrong with Shane.  They said the orginal tic probably is due to Tourette's, but all the movements and problems he is having must be due to anxiety and depression.  Shane's parents asked that he be re-evaluated by a Psychiatrist, and they should get one to him today.

This is a little hard to believe since the mix of Paxil, Propanolol and Ativan
(2 mg) aren't working.

Shane still can't control his movements, needs someone to feed him and help bathe.  His dad ges him up to walk the halls a couple times per day and Shane is leaning badly to the left with his left arm over his head or at his chest, and still walks to the left.

Any reactions or ideas about this new diagnosis?

Thanks,
Diane

[ddkins]

Hi Everyone,

Thanks again for your posts, you have no idea how much they are appreciated.

He stopped his Risperdal probably about a month ago.

Shane was in the University of Arizona Medical Center (UMC) for about 11 days and then transferred to Barrows Neuro Clinic in Phoenix, Az.

At UMC they agreed with you and thought his problems are stemming from the Risperdal.  They also talked about Tardive Diskensia (sp?) as you stated.  They went back and forth saying they were all at a loss as to what he has, but thought it probably was from the Risperdal.

Since being at Barrows, 4 different Neurologists have been treating him together.  They first took him off of all meds for 2 days to see his movements.

Thursday of last week they put him on Clonazepam, Paxil, and Propanolol.  He was doing so well by Friday, they thought they'd release him to go home and rest their, with his family, and in his own environment.  While everyone was happy about that, we also were skeptical becasue becasue everytime Shane does well on a medicine, it doesn't last long.

Sure enough, the next day, he was terrible again, all the jerking and twitching, and no control over anything.  He still can talk, amd has no cognitive impairments.

They decided to keep Shane there and switched him back to Ativan and took him off Clonazepam.  This is so frustrating, since Ativan only worked a few days 3 weeks ago.  So, nothing has been done through the weekend.

His parents are both in Phoenix and will talk to the docs tomorrow (Monday morning) to see what they are going to do.

One of the doctors said that his original "tic" probably is from Tourettes, and all of this is because he probably gets anxious and depressed.  I can see the anxiety - he used to have mild anxiety every once in awhile, but this guy is FAR from depressed!  Even through all the hospital ****, he has been amazing and has kept a good sense of humor.  Of course he has had a few bad days, but who wouldn't!

So everyone is frustrated and feels like they are back to square 1 and we are just waiting to talk to the Neuros tomorrrow.

hopefully they will come up with a different plan of action.

Thanks for listening!

Diane

[medco]

we are referring to vCJD, the human form of the disease, not mad cow disease.

with respect to CJD in humans: people with CJD die within 3-4 months (this is the spontaneous verison), people with vCJD died within 12-13 months. there is also a difference in the symptoms, as well.

while he probably doesn't have vCJD, it is a possibility. nobody in the united states has ever had vCJD (at least there have been no confirmed cases). your statistic of 1 in 200,000,000 is probabaly correct. although, there have been claims of cases of vCJD in the United States that have not been reported.

Flyin2006: I'm sorry, but I'm not familiar with the treatment you mentioned. i believe the risperdal should be stopped, regardless.

[Onewaylife4all]

Just for the record, this kid does NOT have vCjd. This is ridiculous. The odds of a person developing this disease before the age on 30 are 5 in ONE BILLION. I did not make up this statistic either, that is 1 in a 200,000,000 chance of this happening, and the younger the rarer. Second of all, while Mad Cow disease is similar in that it is a prion disease, it is not the same as Cjd. Also, I'm not sure how long these symptoms are going on, but people with Cjd are usually dead withing weeks or months. So if he's still alive, end of story.