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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 7 of 7. This is the beginning of the thread.
Posted by Mama Bear on March 29, 2003, at 23:23:54
I am a mother of a 5 year old little girl. She was diagnosed with oppositional defiant disorder or ODD for short at the age of three years and 10 months. She was put on a neuroleptic called Respirdal. She was on this drug for 17 months and at the end she was on 3mg of this stuff per day. She was given a new diagnoses in January of this year. We were told that she was obsessive compulsive and were told to wean her off respirdal. She did not have any brain damage that we knew of before the use of this nueroleptic. She was even seen by a child neurologist and he said the same thing. It was only when we weaned her off the respirdal that we realized that she had some serious problems from this drug. She has all the symptoms of tardive dyskinesia and we have confronted her pediatrician about it. He basically denies that Respirdal could cause Tardive Dyskinesia. I have read and found out diferently. Has anyone out there ever heard of Dr. Peter Breggin. This guy has successfully testified in a court of law as a medical expert on the field of permanent brain damage/tardive dyskinesia and the associated use of neuroleptics such like respirdal and other psychiatric medications. His recored is actually perfect in court. There have been several other cases that he has aggreed to testify at and the cases had been settled out of court. His web site is www.breggin.com You should check it out if you or someone you know is taking or has taken neuroleptics. This has been an extremely hard week for us as a family. Does anyone out there have some information about this TD and can you tell me if there is any sort of hope besides putting her back on the brain damaging drug. You see these neuroleptics mask what they are doing to your brain while you continue to take them. It is only once you come off of the offending drug that you can tell what damage it has caused the brain. I have read the only thing that can help TD is to go back on the offending drug to control the symptoms from the brain damage that it caused. This sounds ridiculous to me and is not even an option for my 5 yr old daughter. I am considering a medical malpractice suit against the doctors that failed to tell me or her father what the possible side effects that long term use of neuroleptics have on the brain. Her pediatrician tried to tell me that 17 months on this drug is not considered long term use. This Dr. Breggin actually testified at a court case involving a women that was only on respirdal for 14 months and suffered Tardive Dyskinesia from using respirdal. He said that her doctors did not provide her with the proper standard of care. My daughter did not receive proper standard of care either. I am desperate for any information that you can provide me with on this very subject. I look forward to hearing from anyone who may help me so I can in turn help my 5 year old that has been permanently damaged from this neuroleptic. This is also a warning to anyone who is considering taking these types of drugs. Do your research while you can before you start taking these drugs. It is better to find out before the damage happens. From what I can tell once the damage has been done there is no cure and no quick fix solution. This can and is a very debilitating syndrome that is mainly caused by the use of neuroleptics. Tammy tamrobinson@sympatico.ca
Posted by bozeman on March 30, 2003, at 0:56:23
In reply to Tardive Dyskinesia, posted by Mama Bear on March 29, 2003, at 23:23:54
Hi Tammy
I am so sorry about your daughter's side effects from the respirdal. I can only imagine the anguish and frustration that you and her father are going through now.
I did a preliminary search on google and there are some who say that some nutritional supplements --primarily lecithin and vitamin e -- can over time help reverse the symptoms. I have no experience with either TD or antipsychotic or neuroleptic drugs, so don't take my word for it, but it's something you might want to check out. It certainly shouldn't make her any worse. I used "tardive lecithin" for a search string and got several good hits in a long list -- I stopped reading them after the first six or so. It might take a couple of hours to do the research but it might help her.
One thing I did notice -- was that it said at least a month to see improvement, as the nerve sheaths have to regenerate the damage, and that major resolution of symptoms, for those who improve, takes several months.
Good luck to you, and I wish you the best.
Posted by Willow on March 30, 2003, at 10:09:56
In reply to Re: Tardive Dyskinesia » Mama Bear, posted by bozeman on March 30, 2003, at 0:56:23
Mama Bear
I'm not sure of where you are located. I'm in Canada, Ontario so my health care system maybe different from yours.
Is there a large teaching hospital near yourself? What you need to do is find a psychiatrist who is familiar with TD. Which doctor diagnosed the TD? Is he able to treat it?
As a parent, I know my own guilt would have alot to do with how I react and my emotions. But as I've learnt to seperate my own emotions from my children's needs, I've discovered that they are a lot happier as a result.
There are treatments available.
BEST WISHES
Whispering Willow
Posted by manhattom on March 30, 2003, at 11:08:01
In reply to Re: Tardive Dyskinesia, posted by Willow on March 30, 2003, at 10:09:56
as far as i know, TD cannot be fully cured (or perhaps, just very rarely fully rehabilitated), but for many patients, especially one as young as your daughter, there can be much improvement in symptoms, even if there is no full recovery.
as for the lawsuit, i'm not sure. i'm not aware of risperdal being that serious a danger for TD, as in the amount of people who walk away from risperdal with TD is less common than the more traditional anti-psychotics.
however, your daughter was very very young to be on such a drug, and i would check to see if risperdal is even indicated for the use in small children. also, if you were not told the possible side effects of the drug, you have a possible malpractice suit.
it's my full belief that primary care physicians should not be allowed to deal with psychotropics.
Posted by Guy on March 30, 2003, at 13:49:26
In reply to Tardive Dyskinesia, posted by Mama Bear on March 29, 2003, at 23:23:54
Try this link for treatment of TD.
Posted by Mama Bear on April 1, 2003, at 23:30:16
In reply to Re: Tardive Dyskinesia, posted by Guy on March 30, 2003, at 13:49:26
Thanks guys for the information. And the answer to the question of whether these drugs are approved for young children like my daugter is no. When we went in for a talk with the pediatrician who prescribed this neuroleptic he said that these drugs had been approved as orphan drugs for use in children 8 yrs old and older. I reminded him that Andrea is only 5. This doctor didnl't even really know what Tardive Dyskinesia was. He went to a convention with psychiatrists this past week-end. I know we got him thinking about all of this and the possible legal ramifications that go along with it. He said that he had talked to several different psychiatrists and only 1 had seen a child that developed Tardive Dyskinesia. He said that some of these psychaitrists had indicated to him that even without the 17 months on Respirdal ( at the end she was on 3mg/day) she may have developed Tardive Dyskinesia. He is obviously trying to cover himself. And no we were never informed of Tardive Dyskinesia ever ever ever. He never performed a AIMS scale test to look for this. She did have some symptoms while still on the drug it was when she was withdrawn from the agent that damaged her brain this is when it was painfully obvious there was something wrong. She is only 5 and has asked me if she will ever be able to stop moving. I cry inside every moment of every day for this child. This is not her fault. This and all the other doctors have responsibility in this. This is definately a miscarriage of justice hear. These pediatricians really don't know what they are prescribing to kids and the psychaitrists don't want you to know what can really happen because they would be out of a job. This is a very sad situation. Did you know that it is the American and Canadian Standard of care that all patients have the right to be informed of all the side effects good/bad. There should be some sort of consent form filled out saying that you knew all the side effects before you start taking them. It is my plan to have legislature make this mandatory. No consent, no prescription it will be as simple as that. This will prevent alot of undo suffering for patients that have already sufffered enough. I would like to call this Andrea's Law. We as parents have to be advocates for our children because the medical community sure doesn't. If there are other parents out there leave me your e-mail address' and I will let you know what your rights are. Mama Bear
Posted by jane d on April 2, 2003, at 12:38:38
In reply to Re: Tardive Dyskinesia, posted by Mama Bear on April 1, 2003, at 23:30:16
Mama Bear,
I'm on the run today and don't have access to my notes on TD. I never specifically looked for information about young children but I'll check them anyway as soon as I can. Until then, a few quick thoughts.The symptoms you are seeing, which start when the drug is removed, can go away over time. Hold on to that thought. And, while I don't know specifically about TD, in most other things the brains of young children are tremendously flexible so that should also give you hope.
As far as Breggin as an expert, you need to know that American courts do not pass judgment on the competence of so called "expert witnesses". Each side gets whoever they please and often the lawyers seek out (and pay for - don't forget that) someone who will make the most extreme statements for their side. Breggin, obviously is a plaintiff's attorney's dream. BTW another aspect of the american system (and I'm assuming you're canadian from your email address) is that the plaintiff's lawyers in malpractice suits get a percentage of whatever money is recovered.
I've read Breggin's book. He raises some interesting things to think about but, as I recall, he also slants things pretty outrageously. It would be a good idea to check everything you read there somewhere else.
Good luck and let us know how it goes with your daugher.
Jane
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