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!
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?
It, in a way, sounds like he has tardive dyskinesia. Was he on any meds that can cause this before he started deteriorating? Such as certain antidepressants, hypnotics ( like Halcion ). even antipsychotics??? I hear so much distress in your voice. Sorry for your and Shane's situation right now. Also, has he been running a fever?
Have you looked into Risperdal? Tardive Dyskinesia is a possible side effect of this drug. Often , the dyskinesia will resolve with discontinence. Inquire as toe reason for use of the medication. Sometimes, parents need to talk and go into further the pain they feel. Tell your friend...there is no need to feel embarassed. And also tell her, once discontinued, thereare other treatment available and this situation will probably subside. Best of health to Shane, Mom,and friends.
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.
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.
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.
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
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
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:
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?
it's possible that the symptoms are from risperdal. the drug can cause tardive dyskinesia which would account for the muscle tremors/spasms. the drug is also known to cause shuffling gait problems (i.e. difficulty with walking). lastly, people on the drug sometimes develop incontinence. so, perhaps it's a conglomerate of side effects that are a result of the drug.
however, these side effects are usually a result of prolonged use of risperdal. if he's only been on it for a while, the likelihood that these symptoms are due to the drug is low.
if this was vCJD (mad cow), ativan would be relatively ineffective at controlling the symptoms.
the way you described him (i.e. as if he had a stroke) still makes me think of vCJD, though. the fact that his symptoms are so pronounced are also worrisome.
perhaps if you asked the parents to consider vCJD (pronounced variant kroytzfeld jakob disease) instead of mad cow (which has a more negative connotation to it), they may be willing to consider it. mad cow disease is a disease of cattle, while vCJD is the human form of mad cow.
although people in britain as young as 12, i believe, died from the disease, the average age was still around 30. so the likelihood is low, but it would still be worth considering.
Sounds like Shane has improved alot right now. Thank God for that.
You know, after reading all this, did his doctors put him on Risperdal just for a tic???????? So often children will outgrow them. I say this because Risperdal is such a potent drug for such a minor issue. You say he'd been on it about a year.It will take some time for that to clear his system. Please let us how he is doing.We care.
Hi Diane........Hope things are getting better. I am not in the med field but used to be ( RN ) . I fly for a living. I am also a parent and understand the things parents do to ease our children's suffering. That said, I don't know how long it will take to get that Risperdal out of Shane's system. But, I am sure I will sound like Dr. HOUSE ( Fox network TV ) , but I saw once where MD"s did dialysis to rid the body of toxic sunstances ( for real, they did ) and it worked. May have to be a last ditch thing but not the worst treatment. I have also seen brain surgery but I think if I had noanswers yet, dialysis would be the choice right now. Hmmmmmmmmmmmmmmmmm.
forgot to mention - it's reassuring that the Valium worked, as people with vCJD are often unresponsive to medication.
Thanks for letting me know that I did post correctly so that a doctor on here will see this. I have no idea how often they come on and respond, but I hope it is soon. I will talk to Shane's parents tomorrow and tell them they need to check for the prion proteins in a lumbar punctuee if that wasn't done. Thank you so much for telling me that.
Thank you so much for your post. Unfortunately, Shane took another turn downward late last night and all day today. His twitching and jerks are as bad or worse than ever. The valium and other med isn't working now.
Yes, the pediatric neurologist did put him on Risperdal just for the tic (and it was minor - medium at the time. He was getting teased at school, and the doctor felt it would help him, and it did for awhile. Like many of us, his parents had faith in his doctor and did as he said. I think he had been on it for a couple years before all this started. You said it would take some time for it to clear his system. Any idea how long????
You seem to know so much, are you in the medical field?
Thanks for saying you care, it means alot to us.
Thnak you both, you have no idea how much your posts help!
Hi Diane....Please let us know how Shane is doing ( and you as well ).
Medco, Thankyou for explaining the benefits ( Or non ) of dialysis. What do you think of chelation ( spelling ? ) therapy for the excess copper? And do you know what needs to be done about the Risperdal? What about giving narcotics or some other CXNS sedating drug intertheccaly ( again SP? ) I respect your opinion.
logically it would seem that dialysis, by ridding the blood of the risperdal, would reduce the symptoms. however, risperdal acts on certain receptors(namely, it inhibits dopamine receptors, as well as seritonin receptors) and effectively changes the concentrations of these neurotrasmitters in the brain. hence, even removal of the drug from the blood through dialysis, for example, would be unlikely to produce any noticeable effects.
ativan and valium are good choices to stop the muscle spasms. i believe you said he was administered 4 mg of ativan, which is a high dose. if these aren't working, it may be worth trying Klonopin or some other benzodiazepine. however, the ativan, in and off itself, may be causing him to experience other side effects. in fact, one of the side effects of ativan is loss of coordination! did he lose his coordination before or after being place on ativan?
What about Sydenham's chorea (chorea St. Vitus' dance.) Not seen often these days, but.... has he been tested for antibodies to streptococcus in the blood?
My neice had this back in the late 70's and it started with a tic that lasted for about a year, than bam, she was incapasitated for months! The only thing she could move "normally" at it's height were her eyes.
When my daughter was 8 she came down with rheumatic fever with major joint pain complications and the only way they found it was thru the antibody test....even when she has strep throat she never tests postive to this date (and she's 15).
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.
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.
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.
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.
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.
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.
My daily headache is in the back-side of my head and neck pain along with it. I have multiple other symptoms. Memory problems, lack of co-ordination ect. ect. I won't list it. It makes people think I'm just "CRAZY." I won't go there.
My question is, Has ANYONE ever heard of a condition where someone is heat intolerable and cold intolerable.......For instance a cold breeze on the back of my neck, my head or spine makes me not feel anything; like my brain is shutting down. My pulse drops to the high 50's. My skin feels like it's on fire in my face and torso yet the back-side of my head, my hands and feet are freezing. My head is hurting and I go into confusion. I feel no feelings. I am severely slowed down. My skin is white as a Ghost!
Anyone heard of such a thing? Am I crazy?
Please, HELP ME! Anybody out there that knows what I'm looking for to get well?
I had a similar experience wjile taking a medication called clopixol. I had an injection, and about 1-2 days after taking it I experienced loss of use of my arms, legs, my hands, and muscles tightned to the point that I couldn't move.
My movement did return in the following days.
This happenned to me every time I took the injection, so after the third time I discontinued it.
I have told a couple professionals about this, and my counselor told me it sonded like Tardive dystonia. It didn't last forever like some cases, but its the closest thing that I've been able to relate it too.
Hope this helps.
William from Toronto
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