Question:
BWHM…@prodigy.com (Kathryn Taubert) wrote: >I guess what I’d personally like to see is an AST "accounting" of how >many adults feel that medications for TS are: >over prescribed currently, >were overprescribed when they were children, to them, >helped them enough to warrent taking them again if they had the chance, >didn’t help them at all, >caused too many side effects to be worth it, >are currently taking medications for tics that help them to some degree >and warrant continuing them. >What, if anything they felt the benefit of taking medications was, is. >Not very scientific, I know, but perhaps enlightening?? >KAT in CT
Hi KAT! I haven’t been visiting ast for some time (due only to time constraints) and am glad to see you are still keeping alive intelligent, reasoned discussions on issues relating to the appropriateness of medicating for tics. My 14 year old son Andy, who was diagnosed at age 10 with moderate to severe TS, OCD and ADD (having had exhibited symptoms since age 3 or 4) was almost immediately put on meds when he was diagnosed- first Haldol, then when the side effects became unbearable, switched to Orap, then Prolixin, then Loxitane, then Risperdal. The side effects of weight gain and lethargy caused him more problems than the tics. The psychiatrist and the school personnel were bullying us to keep him on meds (the social control issue rears its ugly head) despite the adverse side effects. After a couple of years of struggling with the side effects, Andy decided (with my full support) to try it without the neuroleptics. He still takes Prozac and Ritalin which seem to be helping with the OCD and ADD, but during the one and a half years that he has not been on neuroleptics, he has grown to accept TS and learned to recognize and respond to his body’s movements- he can integrate, camouflage, ignore, and in many other ways creatively cope with his numerous tics. For a year or so after he stopped taking Risperdal he’d go back on it temporarily for a month or two when a self-injurious tic become too strong or destructive to cope with, but he is becoming reluctant to rely on Risperdal any more, even for the short term in extreme situations. He’s got a great personality, and a blossoming sense of humor; the neuroleptics dulled his senses so, and the lack of alertness greatly interfered with his ability to be spontaneous and seize the humor of the moment- he just wasn’t the same kid while he was on them. From my point of view, I’d much rather have the dynamic, alert responsive child with lots of tics than the sleepy, subdued, sluggish one with fewer tics. From Andy’s point of view, he was subject to as many taunts from his peers about his weight as he was about his tics, and he was tired of struggling to stay awake. And the neuroleptics interfered with his ability to play baseball. As you said- this is anecdotal, not scientific, but let it be on record. Judy
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heyju…@pipeline.com (Judith Simon) wrote: >Hi KAT! I haven’t been visiting ast for some time (due only to time >constraints)
Hey, Judy! Welcome back!! KAT in CT
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Bopper001 wrote: > My son Aaron has just started a new tic.it is sniffing with a squel after it. > It has been going on for a few weeks. I am going to bring him into the doctors > tomorrow but can anyone tell me what may work for this tic. My hubby usually > does all the med stuff and he is in Hiawii for a couple of weeks. Any input > would be great. Thanks Beth
I would just say don’t run off to the doctor to try to medicate every little tic. It would be like going to the emergency room for every little nick or cut. There are probably tens of thousands of people around the world who have a similar tic, and yet the world goes on. and I know I have had similar tics, and I turned out……well, never mind 
) BradHAWK
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One family’s experience as to medication: When my son’s TS was first "unmasked," he was in the midst of multiple traumatic events which, in and of themselves even in an NT (neurologically typical) child, would have been enough to cause Post Traumatic Stress Disorder. When his tics first called our attention enough to be diagnoseable, they were moderately severe and many at a time (eye rolling, head jerking up and side, shoulder rolling, shoulder shrugging, head banging, elbow jerking, tensing of abdominals, quads, gluts and calves, multiple and varied vocal tics, piano fingers … etc … all appeared quite suddenly and simultaneously). Separate, although possibly related to the combination of his TS and the traumatic events, he was severely depressed and anxious and beginning to engage in OC behaviors. School was almost out. The initial literature I ordered from TSA about medications left me frightened in terms of side effects, and I was willing to wait it out over the summer, as by then I had learned about waxing and waning and the effect of stress on tics. Most of the tics gradually subsided on their own to where only someone who understands TS could see them. The depression continued to be a major concern and problem. The first psychiatrist we saw prescribed risperdal after one visit EVEN THOUGH the tics had subsided. THAT makes me furious and THAT happens too often. I "fired" her. The tics were minor by then and the list of side effects from risperdal included possible depression! We could not possibly risk worsening his depression. I still find it unconscionable that a psychiatrist would prescribe risperdal (whose side effect profile seems to be growing, by the way) for a child whose tics were not interfering. I suspect that this happens all too often. We decided that the severe depression needed attention and tried an herbal supplement on a whim. It worked. The tics are still there, and he/we have learned to live with them. I don’t think a parent can let depression go in a young child (it can be life-threatening) but I hope that more Dr.’s will take a more cautious approach with prescribing meds for tics. The Dr.’s I have come across recently are more cautious, I’m happy to say.
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The days of the "doctor by devotion" >are far, far behind. The days of the "doctor by dollars" has taken >over (exceptions to the rule are, of course, very cherished but >sometimes hard to find!)
And I’d like to speak out in favor of those physicians who are just as concerned as we are about polypharmacy. I know many of them who are clinicians and researchers who would cheer, and have cheered, this very discussion we are having. Back to the point….it interests me greatly that many of us adults with TS have such strong feelings about the use of meds in children. Many of us can identify with what these kids go through. And yet, there are many adults who have been helped by meds too. I think the issue I see cropping up here is the medicalization of behavior as a means of social control, as has been described by a number of psychiatrists in books describing the tendency to use meds to control behavior. This does happen. The extent to which it happens is the subject of much discussion and controvery. Perhaps not enough discussion to keep it FROM happening all the time. This is one place it CAN and SHOULD be discussed, IMO. However, I think we need to be mindful that it IS a hot topic, especially for many parents who are struggling with these issues right now, and one that we need to be cautious with. We SHOULD discuss it, but not in a way that puts parents on the defensive any more than society already HAS put them on the defensive ("it’s all YOUR fault your kid is that way." etc.). I guess what I’d personally like to see is an AST "accounting" of how many adults feel that medications for TS are: over prescribed currently, were overprescribed when they were children, to them, helped them enough to warrent taking them again if they had the chance, didn’t help them at all, caused too many side effects to be worth it, are currently taking medications for tics that help them to some degree and warrant continuing them. What, if anything they felt the benefit of taking medications was, is. Not very scientific, I know, but perhaps enlightening?? KAT in CT
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Tom Benedict <bened…@bullwinkle.che.utexas.edu> wrote: >I don’t know if I’m setting myself up for getting flamed, but this >and similar posts have me concerned:
yer not gonna’ git flamed by ME, Tom…I happen to agree that many times we try to kill flies with shotguns… >I’ve noticed a large number of posts regarding medication, sometimes >for things I wouldn’t even consider using meds on.
besides, I’ve been flamed before myself on this ‘un…sigh… anyway, it’s largely a function of the society we live in…a pill for every dilemma…..and the treating physician’s philosophy. If "we" concentrate on the tic long enough, it gets even worse. Creating the self fulfilling prophecy. Kids react to their parents more than we’ll ever know (or remember sometimes), and if it seems ‘bad’ to the parents, it’ll seem worse to the kid. I AM NOT SAYING THAT MEDICATIONS ARE TO BE AVOIDED. I am saying that often times we should wait it out, try our best to "ingore" it, and use meds if, and ONLY if, the child is seriously distressed and REALLY needs help. Even some physicians I know are concerned about "polypharmacy," the prescribing of multiple drugs, to counteract each other’s side effects, and to treat multiple situations. We do not, as yet, know the long term affects of such treatment. These drugs are relatively "new" and we do not have any real longitudinal studies on them yet. YES THERE IS A PLACE FOR MEDICATIONS. However, we must also be judicious and cautious in their use. KAT in CT
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On 27 Apr 1998 15:38:17 -0500, Tom Benedict <bened…@bullwinkle.che.utexas.edu> wrote: >I don’t know if I’m setting myself up for getting flamed, but this >and similar posts have me concerned:
No, not from me. >I’ve noticed a large number of posts regarding medication, sometimes >for things I wouldn’t even consider using meds on. Take this last >one: The person in question has a new tic that involves sniffing with >a squeal after it. Unless this is causing the person some serious >distress, I’d be inclined to let it go.
Considering the experiments my docs tried out with me, I certainly agree. >A far more disturbing kind of post I see from time to time is when >people have their kids on multiple meds, where one is used to counter >the side-effects of another. I’m not a medical professional, so I >don’t have any kind of background in this, but this looks to be very >similar to something that happens in software development: >If a particular bug causes a particular error condition, there are two >ways to fix it. Either treat the error condition, or fix the bug. >Far too many software developers treat the error condition. (This is >called an, "If 1 + 1 = 3, then 3 = 2" bug fix.) Treating the >side-effects of a medication with a second or third one sounds awfully >similar.
So you caught on to my trick! And I thought it was unique….. >To use another analogy, many non-drowsy cold formulas use caffeine to >counter the effect of the other ingredients. Rather than having the >expected effect of "depressant + stimulant = balance", they usually >leave me exhausted and wired, unable to sleep, and unable to fully >function.
Unfortunenately, the meds only fight the symptoms and, usually cause other symptoms to appear. Thats why we need a med for that one also. This makes me tend to believe, that *some* researchers are told to develope drugs in the fashion of a dependancy list inorder to sell the whole range: A person wants to cure his cold: so you need ACC Accute 600 (a real whammie on the German market), then some aspirin for the headaches, then some Pepto.. for the acidic stomach, then some "downers" for the higher blood pressure, then a hospital for the ruptured ulcer. Ooops, they don’t own the hospital yet! But seriously, as long as we are given meds to fight symptoms, we must remain in control of the process and be VERY critical as to what docs are doing to us or our children. The days of the "doctor by devotion" are far, far behind. The days of the "doctor by dollars" has taken over (exceptions to the rule are, of course, very cherished but sometimes hard to find!). Almost certainly, it is not in the intention of the pharma industrie to loose their business market, us, the patients (see also BMS involvement in supporting certain congressmen in their campaigns…). So the drugs will continue to fight the old symptoms, while producing new ones ? Klaus
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>Tom Benedict wrote: >> I don’t know if I’m setting myself up for getting flamed, but this >> and similar posts have me concerned: >> I’ve noticed a large number of posts regarding medication, sometimes >> for things I wouldn’t even consider using meds on.
On Tue, 28 Apr 1998 13:18:04 +0200, John Morten Malerbakken <John.Mor…@swipnet.se> wrote: >Taht is the whole point. We see medication used in order to reach some >sort of "social acceptance" level. (Now I am going to get flamed) >No, I do not think so, as I see "curing" because of social needs of those >surrounding the TS person.That is a symptom of lackofrespect for other >people, and contribtes to lower the TS person’s self asteem.
Here here to both of you! I hope neither of you gets flamed for what you wrote, because you speak the truth! I’d like to see how some of the non-ticcing people would feel if they were approached to medicate themselves about their attitudes or lack of acceptance toward ticcing people. And that’s not meant vindictively, either – sometimes you can’t understand until you walk a mile in someone else’s shoes. Some of the medications I’ve used for my Major Depression have increased various tics, and for the most part, it hasn’t bothered me one wit – and I have never once considered taking a med for the increased ticcing. But what has been bothersome is sitting down to a meal with the family, letting out a squawk, and having all eyes come to rest upon me. Why should I feel badly about that squawk? Or why should I consider medicating myself for it? To make everyone else comfortable? And mixing meds? You better be careful, and feel like you are over-educated on them, because their effects can be subtle, gradual, and confusing. Someone advised trying Prozac – well, go right ahead, but be sure to research it thoroughly, and make sure you feel like you can remain alert and on your toes. My son w/TS + bipolar tried it, and he became gradually more aggressive and angry (we didn’t know about the bipolar at the time). Even *he* hadn’t attributed the change to the Prozac, but became his "old self" almost immediately after stopping its use. I’m not saying this could or would happen to anyone else – just giving an example of why people, and especially parents, need to get educated and be on guard. I am not suffering when I squawk at the dinner table, until all eyes are upon me….. Sue
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Amen Tom, I have taken the liberty of snipping a bit in your posting, and Iahve put my comments inbetween your lines. Tom Benedict wrote: > I don’t know if I’m setting myself up for getting flamed, but this > and similar posts have me concerned: > I’ve noticed a large number of posts regarding medication, sometimes > for things I wouldn’t even consider using meds on.
— SNIP — I have never,nor have my sons, considered tics (we have tried a lot of different and are stil trying to invent more 
) to be the real problem as long as they do not take an overwelming effect on the concentration. > So far > this has only happened when I’m alone or at home, so this doesn’t > really cause me any significant distress. As a result I’m not taking > any medication for it.
Taht is the whole point. We see medication used in order to reach some sort of "social acceptance" level. (Now I am going to get flamed) Therefore we see numerous postings by (mostly) mothers who are looking for all sorts of "cures" in order to treat their children. And for what? So that the themselves can take them out without being noticed for their sniffing, coughing, twisting, twitching. (I am getting too warmed up here, so I will not say more in line with this.) There are clearly situations where medication has a positive effect, but that should be used only when positively desired by the individual for something that individual experiences as a problem big enough to care about. (See next paragraph.) > But if a tic is causing significant distress or physical injury, sure, > I could see using medication in that case.
— SNIP — > A far more disturbing kind of post I see from time to time is when > people have their kids on multiple meds, where one is used to counter > the side-effects of another.
Having tried someof the medicines, I can understand why you treat the mucle stiffness of Orap with something else. So there are reasosn for doing this in medical terms. But, the whole problem which needs to be analysed first is if one really need to start with the medication in the first place. —- SNIP —- > Are all these meds necessary, or is this the same kind of thing as the > doctor who prescribed antibiotics for the viral infection I had? > Tom
No, I do not think so, as I see "curing" because of social needs of those surrounding the TS person.That is a symptom of lackofrespect for other people, and contribtes to lower the TS person’s self asteem. John Morten
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bopper…@aol.com (Bopper001) wrote: >My son Aaron has just started a new tic.it is sniffing with a squel after it. >It has been going on for a few weeks. I am going to bring him into the doctors >tomorrow but can anyone tell me what may work for this tic. My hubby usually >does all the med stuff and he is in Hiawii for a couple of weeks. Any input >would be great. Thanks Beth
Beth, does this tic bother your Aaron to the extent that it interferes with his life substantially? Is he asking for relief from it? If not, I’d wait it out. It may pass. KAT in CT
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try prozac Bopper001 <bopper…@aol.com> wrote in article <1998042616403400.MAA24…@ladder03.news.aol.com>… – Hide quoted text — Show quoted text -> My son Aaron has just started a new tic.it is sniffing with a squel after it. > It has been going on for a few weeks. I am going to bring him into the doctors > tomorrow but can anyone tell me what may work for this tic. My hubby usually > does all the med stuff and he is in Hiawii for a couple of weeks. Any input > would be great. Thanks Beth
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I don’t know if I’m setting myself up for getting flamed, but this and similar posts have me concerned: I’ve noticed a large number of posts regarding medication, sometimes for things I wouldn’t even consider using meds on. Take this last one: The person in question has a new tic that involves sniffing with a squeal after it. Unless this is causing the person some serious distress, I’d be inclined to let it go. I just had a new one start a few weeks ago. It only happens when there’s music playing, and then only with certain songs, but all of a sudden I’ll have to let out with a loud coyote-"yip" noise. So far this has only happened when I’m alone or at home, so this doesn’t really cause me any significant distress. As a result I’m not taking any medication for it. But if a tic is causing significant distress or physical injury, sure, I could see using medication in that case. As a kid I had an eye-rolling tic that wound up pulling some muscles in my eye sockets. It gave me terrible headaches. I didn’t know I had TS at the time, but in retrospect I wish I’d taken something to alleviate that one particular tic. A far more disturbing kind of post I see from time to time is when people have their kids on multiple meds, where one is used to counter the side-effects of another. I’m not a medical professional, so I don’t have any kind of background in this, but this looks to be very similar to something that happens in software development: If a particular bug causes a particular error condition, there are two ways to fix it. Either treat the error condition, or fix the bug. Far too many software developers treat the error condition. (This is called an, "If 1 + 1 = 3, then 3 = 2" bug fix.) Treating the side-effects of a medication with a second or third one sounds awfully similar. To use another analogy, many non-drowsy cold formulas use caffeine to counter the effect of the other ingredients. Rather than having the expected effect of "depressant + stimulant = balance", they usually leave me exhausted and wired, unable to sleep, and unable to fully function. Are all these meds necessary, or is this the same kind of thing as the doctor who prescribed antibiotics for the viral infection I had? Tom
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On 27 Apr 1998 00:21:28 GMT, BWHM…@prodigy.com (Kathryn Taubert) wrote: >Beth, does this tic bother your Aaron to the extent that it interferes >with his life substantially? Is he asking for relief from it? If not, I’d >wait it out. It may pass. >KAT in CT
And if you get him concentrated on this special version, chances are he will add it to his collection The tics my parents especially brought to my attention are my dearest ones, so I kept them! Chances are, that this new one will go away or be replaced by another one. I used to try to willfully start a new tic with parts of my body that are more inconspicuous (my toes). It worked for a while but eventually went away because noeone noticed. I really think that part of our TS is that we actually develope tics *to be noticed*, as if we try to intimidate our surroundings with obviously placed tics (face, shoulders, vocal,etc.). Beth, as for the meds, think it through twice before clobbering his system. Did you try alternatives such as minerals and vitamins yet? Klaus in Germany
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My son Aaron has just started a new tic.it is sniffing with a squel after it. It has been going on for a few weeks. I am going to bring him into the doctors tomorrow but can anyone tell me what may work for this tic. My hubby usually does all the med stuff and he is in Hiawii for a couple of weeks. Any input would be great. Thanks Beth
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>Pimozide (Orap) was subscribed today for our 12 year old son with TS and >we have questions. Anyone have experience with the med or know any >helpful info for us? It was very hard to get, Walgreens had to special >order it from their warehouse and the pharmacist had not even heard of >the brand name. That is pretty scary to know.
I have been on it for ten years…..works well…only problem I had was some weight gain and drowsiness (for 3 months) __________________________________________________________________________ I have married my Faye and destiny!!!!!!!!!!!! Chaim
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our son has been on orap for almost 2 years and he’s doing very well. we’ve never had a problem getting it through the pharmacy at pathmark supermarkets.
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"Stephen Heiermann" <SMHEIERM…@webtv.net> wrote in message > Pimozide (Orap) was subscribed today for our 12 year old son with TS and > we have questions. Anyone have experience with the med or know any > helpful info for us? It was very hard to get, Walgreens had to special > order it from their warehouse and the pharmacist had not even heard of > the brand name. That is pretty scary to know.
G’day Stephen. My son was on Pimozide (Orap) for some time when he was younger. I’m not sure what a ‘Walgreens’ is but guess it’s a Chemist Shop/Pharmacy. It always needed to be ordered in for us too. Same with a lot of drugs that aren’t used all that often in the general community. It’s not much point for a Chemist to keep drugs on their shelf if they’re not going to be ordered. They would just go out of date. I recall it was very expensive here by the way. My son had a baseline ECG/EKG done prior to starting the Pimozide. He then had 3 month check-up ECG’s as well. We were also told he must avoid certain types of antibiotics (see Greg/Phantom’s post). These are purely precautions. Lots of meds. require monitoring. Some antidepressants, for example, require blood tests. Lara
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My son was on Orap a few years. He’s now on Risperdal. We had no problems with Orap–the reason he was taken off of it had more to do with the capriciousness of the doctor than with necessity. I think you should be more frightened of your pharmacist than of Orap. All meds have side effects–some more serious than others, and Orap *is* in the big leagues, along with Haldol, Risperdal, and Zyprexa. What did your doctor tell you about the drug? For more info about meds, go to www.tourettesyndrome.org–there’s a medical reference there that’s easier to understand than the Physician’s Desk Reference. Stephen Heiermann <SMHEIERM…@webtv.net> wrote: > Pimozide (Orap) was subscribed today for our 12 year old son with TS and > we have questions. Anyone have experience with the med or know any > helpful info for us? It was very hard to get, Walgreens had to special > order it from their warehouse and the pharmacist had not even heard of > the brand name. That is pretty scary to know.
– Theresa clanm…@earthlink.net
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Pimozide (Orap) was subscribed today for our 12 year old son with TS and we have questions. Anyone have experience with the med or know any helpful info for us? It was very hard to get, Walgreens had to special order it from their warehouse and the pharmacist had not even heard of the brand name. That is pretty scary to know.
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It’s been in use A LONG, LONG TIME! We have plenty of experience with it; it’s our first-line drug for TS. Roger D. Freeman, M.D., Director Neuropsychiatry Clinic, BC’s Children’s Hospital, Vancouver, BC – Hide quoted text — Show quoted text -Stephen Heiermann wrote: > Pimozide (Orap) was subscribed today for our 12 year old son with TS and > we have questions. Anyone have experience with the med or know any > helpful info for us? It was very hard to get, Walgreens had to special > order it from their warehouse and the pharmacist had not even heard of > the brand name. That is pretty scary to know.
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On Wed, 26 Jul 2000 22:26:22 -0400 (EDT), SMHEIERM…@webtv.net (Stephen Heiermann) wrote: >Pimozide (Orap) was subscribed today for our 12 year old son with TS and >we have questions. Anyone have experience with the med or know any >helpful info for us? It was very hard to get, Walgreens had to special >order it from their warehouse and the pharmacist had not even heard of >the brand name. That is pretty scary to know.
Everyone has to order Orap. It’s just not something that’s very common, or very new. It took my Eckerd’s 6 days to get it in. My only advise is to watch the dosage. I can only guess that the Rx is for 1mg/day or some-such thing. Orap is *very* sedating, so you may have to fiddle with the dosage. DON’T DO THAT WITHOUT LETTING THE DOCTOR KNOW. It’s a tricky business. Also, stay away from macrolide antibiotics. Most of them will have warnings about interactions with Orap. I’ve got a link to the medical bulletin from 1996 about this on my site. I, myself, was on Orap for 13 years, and after a 5 year hiatus, am back on it. I’m taking 1/2 mg/3-5 days, which is well below the clinical dose, but I am very sensitive to medications. Also, be aware that the #2 side effect (behind the sedation effect) is weight gain. The #3 effect? Restlessness. That’s how I figured my dosage. When I found a balance of restlessness and sedation, that’s the dose. I know that sound strange, but that’s my experience. -Greg G — -Greg "TORCHA" Gershowitz To Reply: pull THE PLUG http://www.geocities.com/torcha.geo (My personal site) http://tourettic.homestead.com/ (The unofficial AST site) "Much of Twister’s footage was done in the digital domain, with 1s representing incompetence and 0s representing crap." – Mike Nelson (also applies to SW:TPM)
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