The Fine Line…
Question:
They said it sounded as if we were >attempting to justify a handicap, or that we were displaying an >embarrassing immaturity which tries to aggrandize a disparaging condition. >To our protests to the contrary, they responded, "whatever; just don’t do >it… it gives parents the wrong idea about TS." There was at least one >doctor who sorely criticized us and said that there is absolutely no way >that TS could be the cause of this "mind" we were discussing, and another >person even argued that there is no medical definition of "mind."
Shooshie, I was here "then" too. And I don’t recall this exactly the same way. I do recall disagreements. I do recall those very well. But I do not recall "them" suggesting that "we" were attempting to justify a handicap, I do recall people suggesting the possibility of that! But I took that in the spirit of discussing ALL the possibilities. I also do not recall that the "doctor" in question, whom some of us know, ever having said that TS could NOT be the cause of any such thing. I do recall the individual saying there is no current DATA to substantiate it . ..yet. I think that, perhaps, the disagreements here, were taken much too personally by some of us who got very, very defensive. I do know, for a fact, that the "doctor" in question, is one our our greatest "supporters. " In many ways, the individual happens to believe that there are potentially cognitive benefits…as yet to be elucidated in the "data." But, as a scientist, these people cannot make the same kind of sweeping generalizations that we wish they could! Or that WE can. Oh, boy! >The arguments erupted! We realized that there was a long, uphill road >ahead of us if we were ever to convince the public that there is something >to this.
Yep, you got THAT one right. But it is happening. You will see more in the literature about this within the next few years. Count on it. In one of them I was >defending the value of this very word, "tourettic," which now seems fairly >commonplace even in general journalistic writing. But the first usage I’d >seen of it was from Pieter (who may have found it in Oliver Sacks). Pieter >proposed its validity, in lowercase, as a noun and an adjective.
Actually, is isn’t that commonplace. You won’t see much, if any, officially sanctioned documents by TSA using this word as a noun. But the truth is that I love that guy, and it warms my heart >(and mind) to see him posting here –
As hard as it is for him, and others perhaps, to believe. So do I. 
KAT in CT – Hide quoted text — Show quoted text –
Response:
Shooshie wrote: > In article > <Pine.LNX.3.95.970408130505.10122G-100…@basilisk.epiuse.co.za>, Pieter > Nagel <pna…@basilisk.epiuse.co.za> wrote: > >I just want to bring some perspective here. Serotonin is a >[snip] > GO! GO! GO! GO! GO! GO! GO! GO! GO! PIETER!
Shooshie, This *was* a great post by Pieter, but he doesn’t need a cheering section. He writes quite enough without encouragement. — //=========// Primary email mailto:Barti…@worldnet.att.net.spam /// Randall (Remove ".spam" when you reply) Bart /// Other email @geocities.com, @hotmail.com, @aol.com //=========// I’m Barticus everywhere
Response:
In article <334F330B.6…@worldnet.att.net.spam>, RandallBart <Barti…@worldnet.att.net.spam> wrote:
>Shooshie wrote: >> >> In article >> <Pine.LNX.3.95.970408130505.10122G-100…@basilisk.epiuse.co.za>, Pieter >> Nagel <pna…@basilisk.epiuse.co.za> wrote: >> >> >I just want to bring some perspective here. Serotonin is a >>[snip] >> >> GO! GO! GO! GO! GO! GO! GO! GO! GO! PIETER! >> >Shooshie, > >This *was* a great post by Pieter, but he doesn’t need a cheering >section. He writes quite enough without encouragement. I think you mean this in fun, of course, but I just want to say a couple of things about Pieter. First of all, he started this group. The entire world of Tourettic people owe him thanks for this. Oh, I suppose someone would have started it eventually anyway, but Pieter did it and just in time, too; our intitial conversations in this group very possibly saved my life. I won’t go into that right now. In the early stages, it became apparent that this was the first forum which was open to pretty much the entire world (at least that part which is wired). It was here that we each began to notice that this strange "something" which we had carried silently all our lives was shared by a noticeable percentage of our tourettic contributors. Pieter was the leader of this kind of discussion. Apparently it was something that had consumed his curiosity so long that he just *had* to know. And that’s why the group came into being. Pieter just had to see if this unusual cognitive behavior was really a tourettic thing. To tell the truth, I just thought I was just born different (ok, I guess TS *does* make you different from birth, but I didn’t know about TS). I was always considered something of a genius, but when I was a child my parents were careful to avoid using that term around me, so I thought there was something bad about being too smart. I knew too much, and people seemed almost to resent it when I talked, since I seemed to "know" things I’d never been exposed to. I learned at an early age to be sensitive to the exact moment in a conversation that I lost my listeners, shooting ‘way out beyond their reasoning speed. I’d immediately stop and let them talk at that point (they usually changed the subject). Then there was the stream of thought which showed me the answer (or a dozen of them) before someone finished asking the question, and then the rapid-fire moods and… oh, I’m digressing again. But I thought it was just me. Although I sought others like me, I never found anyone… till I came here. Here I found out that Pieter, Mark Odegard, Raenna, and dozens of others I cannot even name anymore all shared similar cognitive patterns. I can’t tell you how happy this made me, to find comerades who understood this, who lived it. After Pieter founded the group, and after much discussion about the "tourettic mind," we experienced a backlash from others who did not like us discussing this in public. They said it sounded as if we were attempting to justify a handicap, or that we were displaying an embarrassing immaturity which tries to aggrandize a disparaging condition. To our protests to the contrary, they responded, "whatever; just don’t do it… it gives parents the wrong idea about TS." There was at least one doctor who sorely criticized us and said that there is absolutely no way that TS could be the cause of this "mind" we were discussing, and another person even argued that there is no medical definition of "mind." Oh, boy! The arguments erupted! We realized that there was a long, uphill road ahead of us if we were ever to convince the public that there is something to this. Pieter was discouraged, as were the rest of us. He disappeared for long stretches at a time. I saw this as a tremendous loss. Maybe I didn’t always agree completely with Pieter, but he taught me more nearly anyone else here, and I missed his spirited and well-thought-out writing. I attempted to maintain a calm, level-headed "parent-friendly" presence for us ‘radical tourettics,’ but somehow found myself at the center of more than a few flame wars that stretched into eternity. In one of them I was defending the value of this very word, "tourettic," which now seems fairly commonplace even in general journalistic writing. But the first usage I’d seen of it was from Pieter (who may have found it in Oliver Sacks). Pieter proposed its validity, in lowercase, as a noun and an adjective. So, forgive my exuberance if I seem too eager to cheer Pieter, or if I encourage too much those multi-page missives that come bubbling up from South Africa. But the truth is that I love that guy, and it warms my heart (and mind) to see him posting here – to any length he desires. This place doesn’t feel complete when he’s gone. Now, if everyone will forgive my little version of the history of a.s.t, and if Pieter will forgive me for embarrassing him in public, then we can all get back to the reason we are here. Thanks, Shooshie
Response:
In article <Pine.LNX.3.96.970419170042.4716R-100…@basilisk.epiuse.co.za>, Pieter Nagel <pna…@basilisk.epiuse.co.za> wrote:
>Now, let the giants stride, and I hope Zeuss fells no-one with a >lightning bolt. That’s why I try to leave behind liiiiiiiiiii-tle bitty footprints. Shooshie
Response:
On Tue, 8 Apr 1997 14:31:31 +0200, Pieter Nagel <pna…@basilisk.epiuse.co.za> wrote:
<snip> – Hide quoted text — Show quoted text ->It is EXTREMELY unlikely that any genetic neurological >condition like TS is caused by neurotransmitter imbalances. >Chronic neurotranmitter deficiencies would much more likely >lead to gross and global neurological effects much more >debilitating and much less specific than tics and the >behavioural problems. >It is much more likely that TS is caused by something like >a sudden growth spurt in neural interconnections in a >certain part of the brain during some stage of the fetusses >development. In other words, by the WAY in which the >"cobweb" of "wires" in the brain is woven. <snip> >******************************************************** >* TO SUM UP: THE CHEMICAL TREATMENT OF TS (AND OTHER * >* DISORDERS IS UNSOUND AND HIGHLY QUESTIONABLE BY EVEN * >* THE SIMPLEST PRINCIPLES OF NEUROLOGY. * >********************************************************
Hi Pieter, While I always find what you have to say interesting, even when I disagree with you, I feel compelled to ask you what your sources are for the extremely strong, definitive statements repeated above. BTW, I’m glad your mind is back. I enjoyed the riffs you posted on its return. Ellen in L.A.
Response:
In article <Pine.LNX.3.95.970408130505.10122G-100…@basilisk.epiuse.co.za>, Pieter Nagel <pna…@basilisk.epiuse.co.za> wrote:
>I just want to bring some perspective here. Serotonin is a >neurotransmitter. Neurotransmitters do not cause behaviour. > >Neurotransmitters help carry messages from one neuron >(brain-cell) to the next, but they do NOT originate those >messages. Serotonin is used widely in the brain and it >helps to carry messages relating to thousands of >behaviours, not only temper. You cannot tamper with it >without affecting a lot else. —————- Damn Right!!! Tell all, Pieter, tell all! —————- [... some deleted...] >In the brain, there are only a handfull major >neurotransmitters. It is impossible to tamper with these >without having a wide-ranging effect. If one adds up all >the neurotransmitters that are supposedly responsible for >TS, ADD, OCD, depression etc., there are barely any >neurontransmitters left to supposedly cause the range of >"normal" behaviour. —————- Strange, but true!!! —————- > >Someone said her daughter is on Risperdal, Clonidine and >Trazadone. That means that in that girl’s brain, 4 out of 7 >major neurotransmitters are affected: noradrenaline, >acetylcholine, serotonin and dopamine. Do you have any idea >what a HUGE portion of brain chemistry is affected in this >so-called specific treatment of TS? —————- Tell us, Pieter! This is great! —————- > >People, wake up. The only reason why psychiatry keeps >saying "Disorder X is caused by neurotransmitter Y" is >because the only "tools" they have to reach in and touch >the brain are medications that affect neurotransmitters. >They are like people whose only tools are hammers and who >claim that everything is a nail. —————- You NAILED that one! This one is going in my book of quotes for posterity. GO! GO! GO! GO! GO! GO! GO! GO! GO! PIETER! And in regard to the whole message, the rest of which follows, someone ought to have this one bronzed! Put it in the FAQ! This is great. Seriously, Pieter, sometimes you outdo even yourself. Now, how do you get this message through some of those stone-age ears of people for whom the study of neurology has caused complete disconnection of some of those green wires? Shooshie —————- > >Do you know on what shaky evidence they say so? All the >explanations I read so far say: "well, this drug seems to >help tourettics to cope, and the drug decreases X, so maybe >there was too much X to start with." This is very dubious >science. It is sufficient for preliminary hypotheses but >*not* for reaching out and altering millions of people’s >brain chemistry. > >It is EXTREMELY unlikely that any genetic neurological >condition like TS is caused by neurotransmitter imbalances. >Chronic neurotranmitter deficiencies would much more likely >lead to gross and global neurological effects much more >debilitating and much less specific than tics and the >behavioural problems. > >It is much more likely that TS is caused by something like >a sudden growth spurt in neural interconnections in a >certain part of the brain during some stage of the fetusses >development. In other words, by the WAY in which the >"cobweb" of "wires" in the brain is woven. > >The differences in neurotransmitter levels in TS (if any, >at all) are most likely the result of the "mood" and >"mental state" people with TS tend to be in because of the >way the brain works, and not the other way around. > >The only way you can "treat" that is take a microlaser to >that brain and decide which of the millions of wires you >should cut. Which cannot be done. > >These "wires" in the brain are like the telephone wires I >spoke of earlier and giving Haldol or Orap or whatever to a >kid amounts to "Let’s turn down the volume on all of the >900 million green wires in his brain because maybe some of >the green ones are out of kilt. Ah, forget about what all >the other green ones do." > >******************************************************** >* TO SUM UP: THE CHEMICAL TREATMENT OF TS (AND OTHER * >* DISORDERS IS UNSOUND AND HIGHLY QUESTIONABLE BY EVEN * >* THE SIMPLEST PRINCIPLES OF NEUROLOGY. * >******************************************************** > > ,_ > /_) /| / > / i e t e r / |/ a g e l
Response:
—–BEGIN PGP SIGNED MESSAGE—– On 8 Apr 1997, DCFields wrote: > I don’t think the issue is as simple as feeling guilty when deciding > against meds.
No, well, I don’t think it is a major "issue". But there’s so much propaganda out there that TS medication is supposedly a "specific" and "effective" cure for a "well known" "chemical deficiency" that I can believe many people are ed to believe it plain negligent not to medicate. And therefore feel uncertain, and a bit guilty, about not medicating. The problem is education, and doctors seemingly not being candid about side effects. They seem to think "side effects" refers to something rather innocent like headaches and drowsiness? I still can’t get over the kid getting SSRI’s and MAOI’s simultaneously. Risk: seizures, coma, fatal respiratory crisis. I just hope the doctor prescribing the MAOI explained the strict diet, the dangers of eating ripe cheese and nuts (?), and how dangerous many nonprescription drugs like some nasal decongestants can be in combination with the MAOI. Then all these people casually remarking about this or that med given to counteract Tardive Dyskenesia. Do they know it is a sign of permanent, irreversible damage? Oh, and two kids apparently have parkinsonian symptoms. Mentioned as an aside comment. Nobody raises a hair. Taken for granted: "Ah well, just get another med". Once again, the damage may be irreversible. I’m still upset. For *(!$#sakes, these are KIDS! And then these endless lists of medicines! 7 year old kids on 5 meds. There’s one for agression, sleepyness, concentration, tics, learning disorder. As if there were lots of neat little buttons in the brain, labeled "agression" etc. that the meds miraculoulsy manage to push. Then I go count how many major neurotransmitters are affected by that chemical coctail and I realise there’s nothing left. How can ANYONE believe that is a "specific" treatment? Nah! Sledgehammer! Let me explain it simply: the brain is a computer wired with about 7 colours of wire. Each med changes the signal-quality of at one colour wire (or more), throughout the WHOLE computer – not just a part. Now give four of those to the computer. Stand back and say: aaaaah, it’s running so nice and quiet now, the lights aren’t blinking as wildly as before, it must be running better…. TS meds are not a specific cure for a specific problem. They do NOT push just the rights buttons without affecting the rest. Most drugs are a like trying to hit a pinhead with a sledgehammer. They just happen to have an effect which seems, externally, "better". And I still can’t get over that kind mixing MAOI and SSRI drugs. ,_ /_) /| / / i e t e r / |/ a g e l PGP: finger pna…@epiuse.co.za —–BEGIN PGP SIGNATURE—– Version: 2.6.3i Charset: noconv iQCVAwUBM0rN7YEyLhFuS2P9AQHvZAP/RnhCKVccyatbLIPq8pzggrLstHgBo86e uE+Set6TJR05/wJdo6VKUeFgbiFyWzCyf256DH3xIeHNLqYMqCqwlFvUgLTUkd9g iZTtjk48lGasPRAiIfwkblOK5nr+yespCfpWATe9cj84jGbxCwf52c2NJEfAiAW6 +TRy348qtqQ= =EmT7 —–END PGP SIGNATURE—–
Response:
—–BEGIN PGP SIGNED MESSAGE—– On 8 Apr 1997, DReeves728 wrote: > Whatever decision you make, it is not > irreversible. Always keep that in mind!
The unfortonate fact is that many medications can lead to IRREVERSIBLE side effects. In a recent post I listed quite a few potential irreversible side effects of neuroleptic drugs and that I got from a simple scanning of the chapter headings and medicine leaflets. The medicine leaflets say, for instance: "possible side-effects: Tardive Dyskenesia" but they DON’T go to the trouble of telling you that Tardive Dyskenesia is a PERMANENT side effect. Many kids are taking dangerous "drug coctails". The following comes straight from the Zoloft (it’s like Prozac) leaflet, but note that it is not speaking about SSRI medications in *general*. "IN PATIENTS RECEIVING ANOTHER SEROTONIN REUPTAKE INHIBITOR DRUG IN COMBINATION WITH A MONOAMINE OXIDASE INHIBITOR (MAOI), THERE HAVE BEEN REPORTS OF SERIOUS, SOMETIMES FATAL, REACTIONS INCLUDING HYPERTHERMIA, RIGIDITY, MYOCLONUS, AUTONOMIC INSTABILITY WITH POSSIBLE RAPID FLUCTUATIONS OF VITAL SIGNS, MENTAL STATUS CHANGES THAT INCLUDE EXTREME AGITATION PROGRESSING TO DELIRIUM AND COMA." There ARE people on this newsgroups whose kids are on SSRI’s and MAOI’s simultaneously. In other words, whose kids are at risk of serious, sometimes fatal reactions. Now let’s see how candid and open-hearted the drug companies are about side effects: "It is not known whether interactions will occur between monoamine oxidase (MAO) inhibitors and Trazodone. Due to the absence of clinical experience, if MAO inhibitors are discontinued shortly before or are to be given concomitantly with Trazodone, therapy should be initiated cautiously with gradual increase in dosage until optimum response is achieved." It is not known whether trazodone and vinegar interact either. So why single out MAO inhibitors? Because other people taking MAOI’s and SSRI’s (like Trazodone) DIED or went into COMA’s. But they don’t explicitly tell you *why* they don’t recomend taking both simultaneoulsy, or *why* they were reluctant to do trials on the interactions between MAOI’s and their drug. I suppose some people think I am on some scare-tactic campaign here, but I can’t ethically shut up about what I heard when it comes to warning people about irreversible damage. Parents, maybe your doctors are not telling you everything you should know about these drugs. ,_ /_) /| / / i e t e r / |/ a g e l PGP: finger pna…@epiuse.co.za —–BEGIN PGP SIGNATURE—– Version: 2.6.3i Charset: noconv iQCVAwUBM0pI8YEyLhFuS2P9AQFP6wQAgl4dFDzPOha7yI++BGRyVOJBYLshEP3A XWuNf8Z7FpCdpjrJzBEwlzidgqFJlAjDF4+qsSAxmFIqe3Yj/HpTxkMhiOhuR/R/ ykEVIRLcNhD/fL7qB05j9ALYEBHetbdPrjMFP0ee7OMCF8SZtW+I6ea+rpQOOlye hy+d0Qopf70= =aGUA —–END PGP SIGNATURE—–
Response:
Thanks for your help and input. I will try the elimination of milk but as far as Clonidine, that was the first medication he was on and it made him a walking zombie and did nothing for his tics. I wouldn’t want him to go thru that again. I have grounded him but feel bad because I’m not really sure if he can control the fighting. Regardless, it is behavior that is unacceptable, expecially kicking a girl.
Response:
Hi Pamela, I think I wrote this to you before, but I’ll say it again. We have never medicated our kids for tics. When my daughter was 8 the neurologist gave her the option and we looked into the drug (I don’t remember which it was) and she was very against it because of the side affects. Both kids are medicated for ocd, and it works most of the time with little or no side affects. It’s a real crap shoot and sometimes the kids will be able to let you know. Mine have always just kind of dealt with the tics and with puberty, they seem to have basically disappeared in my daughter. But the other ugly things showing up…well, there is no medication for that!!! Nanci
Response:
Hello to all, My husband wrote to you about our 11 yr. old son being somewhat aggresive in that he likes to wrestle or be physical with us. He said we took him off Haldol and we have seen a major improvement in his behavior and attitude, all for the better. Joseph seems very happy to be off meds. We have an appointment with Dr. Saslow in May which we are looking forward to but I’m having a real dilema with myself about how I feel about meds. At this point in time with my son I am seriously considering not using any drugs at all , let there be tics! Why do the tics have to go away only to have to deal with all the side effects of the medications? If he is happier and better behaved why start experimenting with drugs? Take care, Pamela
Response:
Pamela, Perhaps the key here is "gave her the option". Tics affect different kids differently. Some can handle them okay, some want the meds. Not all meds have significant side effects. My daughter’s tics caused her terrible pain and embarrassment. She wanted to try the medication. We went to two Dr.s and had several opinions. Katie’s tics were disruptive to her normal functioning and very painful. The meds stopped 85% or so of the tics and made a positive difference for Katie. She had no side effects. Talk to your child. Consider all options, including a second opinion from another Dr. The decision should be made with all your cards on the table, with your child. NFR123 <nfr…@aol.com> wrote in article <19970407113701.HAA08…@ladder01.news.aol.com>… – Hide quoted text — Show quoted text -> Hi Pamela, I think I wrote this to you before, but I’ll say it again. We > have never medicated our kids for tics. When my daughter was 8 the > neurologist gave her the option and we looked into the drug (I don’t > remember which it was) and she was very against it because of the side > affects. Both kids are medicated for ocd, and it works most of the time > with little or no side affects. It’s a real crap shoot and sometimes the > kids will be able to let you know. Mine have always just kind of dealt > with the tics and with puberty, they seem to have basically disappeared in > my daughter. But the other ugly things showing up…well, there is no > medication for that!!! Nanci
Response:
- Hide quoted text — Show quoted text -Nancy <hicex…@gvi.net> wrote: >Pamela, >Perhaps the key here is "gave her the option". Tics affect different kids >differently. Some can handle them okay, some want the meds. Not all >meds have significant side effects. My daughter’s tics caused her terrible >pain and embarrassment. She wanted to try the medication. We went to >two Dr.s and had several opinions. Katie’s tics were disruptive to her >normal >functioning and very painful. The meds stopped 85% or so of the tics and >made a positive difference for Katie. She had no side effects. >Talk to your child. Consider all options, including a second opinion from >another >Dr. The decision should be made with all your cards on the table, with >your child.
Pamela, I agree with Nancy. Its a big decision, and one your child should definitely be involved in. My son (11yo) was 9 when he quit taking any meds. It was his choice. He didn’t like the side effects. Fortunately for him, he can cope without it. Some children have a harder time, and there is nothing wrong with their choice to use meds if they feel they need them. Whatever decision you make, it is not irreversible. Always keep that in mind! Debbie Reeves
Response:
On 7 Apr 1997 pamel…@aol.com wrote: > I’m having a real > dilema with myself about how I feel about meds. At this > point in time with my son I am seriously considering not > using any drugs at all , let there be tics! Why do the > tics have to go away only to have to deal with all the > side effects of the medications? If he is happier and > better behaved why start experimenting with drugs?
Good question and you have my salute. No drugs, and you avoid the risk of him getting Tardive Dyskenisia and all the rest. If there is no benifit for you why on EARTH take meds in the first place? You almost sound a bit guilty about deciding anti-meds. Who said you *should* be pro in the first place? ,_ /_) /| / / i e t e r / |/ a g e l Hi Pieter, I don’t think the issue is as simple as feeling guilty when deciding against meds. My background is in music, marketing, and finance. I never had any kind of medical education that would make me an expert in deciding whether or not to use a medication. Unfortunately, I’ve learned the hard way, through personal experience with my son that medications can bring on unwanted side effects. So, I don’t think it is so much an issue of guilt, as it is an issue that the general public does not have a medical background. Adding to the dilemma is the fact that there is no "miracle pill’ for TS and the associated disorders. Many other areas of medical disorders such as diabeties have a miracle pill, ie, insulin. I don’t think that insulin’s benefits vs side effects are debated at the same level as the meds for TS and associated disorders. Regards, Diane in CT
Response:
—–BEGIN PGP SIGNED MESSAGE—– On 5 Apr 1997, Nancy Powers wrote: > If you keep reading Dr. COmings book, you’ll find a section > on Seratonin. As I read it, he blames Seratonin for the temper more > than the chemicals affected by clonidine (it’s an Alpha 1 blocker)
I just want to bring some perspective here. Serotonin is a neurotransmitter. Neurotransmitters do not cause behaviour. Neurotransmitters help carry messages from one neuron (brain-cell) to the next, but they do NOT originate those messages. Serotonin is used widely in the brain and it helps to carry messages relating to thousands of behaviours, not only temper. You cannot tamper with it without affecting a lot else. Serotonin is like a "telephone wire" connecting billions of cells in the brain. Saying that Serotonin causes temper is like saying telephone wires cause obscene phone calls. Or trying to "treat" obscene phone calls by turning down the volume on all the phone calls in an entire suburb, and thinking the Lifeline telephone councillors won’t be affected. The claim is made that the chemical treatment of TS, depression etc. is "like giving insulin to a diabetic". This is absurd and gives a false impression of a specific treatment. Outside the brain, there are millions of chemicals, many of these have a very specific job. One can say that "diabetes is caused by a lack of insulin" and "insulin is responsible for sugar metabolism" with a high degree of certainty because there are still millions of other chemicals left to do all the other stuff the body does. Giving insulin to a diabetic is a SPECIFIC treatment. In the brain, there are only a handfull major neurotransmitters. It is impossible to tamper with these without having a wide-ranging effect. If one adds up all the neurotransmitters that are supposedly responsible for TS, ADD, OCD, depression etc., there are barely any neurontransmitters left to supposedly cause the range of "normal" behaviour. Someone said her daughter is on Risperdal, Clonidine and Trazadone. That means that in that girl’s brain, 4 out of 7 major neurotransmitters are affected: noradrenaline, acetylcholine, serotonin and dopamine. Do you have any idea what a HUGE portion of brain chemistry is affected in this so-called specific treatment of TS? People, wake up. The only reason why psychiatry keeps saying "Disorder X is caused by neurotransmitter Y" is because the only "tools" they have to reach in and touch the brain are medications that affect neurotransmitters. They are like people whose only tools are hammers and who claim that everything is a nail. Do you know on what shaky evidence they say so? All the explanations I read so far say: "well, this drug seems to help tourettics to cope, and the drug decreases X, so maybe there was too much X to start with." This is very dubious science. It is sufficient for preliminary hypotheses but *not* for reaching out and altering millions of people’s brain chemistry. It is EXTREMELY unlikely that any genetic neurological condition like TS is caused by neurotransmitter imbalances. Chronic neurotranmitter deficiencies would much more likely lead to gross and global neurological effects much more debilitating and much less specific than tics and the behavioural problems. It is much more likely that TS is caused by something like a sudden growth spurt in neural interconnections in a certain part of the brain during some stage of the fetusses development. In other words, by the WAY in which the "cobweb" of "wires" in the brain is woven. The differences in neurotransmitter levels in TS (if any, at all) are most likely the result of the "mood" and "mental state" people with TS tend to be in because of the way the brain works, and not the other way around. The only way you can "treat" that is take a microlaser to that brain and decide which of the millions of wires you should cut. Which cannot be done. These "wires" in the brain are like the telephone wires I spoke of earlier and giving Haldol or Orap or whatever to a kid amounts to "Let’s turn down the volume on all of the 900 million green wires in his brain because maybe some of the green ones are out of kilt. Ah, forget about what all the other green ones do." ******************************************************** * TO SUM UP: THE CHEMICAL TREATMENT OF TS (AND OTHER * * DISORDERS IS UNSOUND AND HIGHLY QUESTIONABLE BY EVEN * * THE SIMPLEST PRINCIPLES OF NEUROLOGY. * ******************************************************** ,_ /_) /| / / i e t e r / |/ a g e l PGP: finger pna…@epiuse.co.za —–BEGIN PGP SIGNATURE—– Version: 2.6.3i Charset: noconv iQCVAwUBM0o6p4EyLhFuS2P9AQGZwQQAjjJT78XTdoy9yxbggRKWJ/FsUUOWTWfw mnmtOax/Ci8IJHvqobUneb2yBOAYtpgrWRviiAhLPL8DdlCQ9VCzaI5zj8YiUmQP gD7ehlZ7zEq3a7zUI2n956cTPhR3s7Kp1jMLc6f/bj2IXUEeQrL+Ig+w42bGU8F8 S0unaCiPaus= =d036 —–END PGP SIGNATURE—–
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My 9 1/2 year old son takes 2mg/day haladol. I’m having a hard time figuring out the line of bad behavior, medication or ts. He FIGHTS CONSTANTLY. He constantly comes up to other children with a karate type of action (he does not take karate, he plays roller-blade hockey and basketball). He kicks my older daughter’s friends, slaps people on the buttocks, has fights with his 2 "best buddies" who live on the street. I know alot of his "hat stealing" and things of that nature are just to get kid’s attention. He sneaks watching wrestling on TV. He also fights in his sleep. Please someone…is this the medication? Is it a TS thing? Or just him??? I’m tired of apoligizing to neighbors about this.
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My son, 11, has been doing pretty much the same thing as yours. He seems to get to a point where, although his spirits seem high, he really wants to burn off some excess energy, but does it inappropriately. My son also plays roller hockey. It’s really the first sport he has stuck with long enough to gain some skill. That has been good for him and I encourage it. The aggresive behavior ( always wanting to hit me, his father, and even trying to wrestle with his mom are two examples) is not in evidence on the hockey rink. There are many other players more agressive than he; he seems to let it out mostly at home with family or close friends. I think it feels safer to him to do so, and although we come down hard on him for hurting people in fun, I still believe that many boys are sorting out how and when aggression is ok. He stopped taking Haldol 2 weeks ago (1 to 1 1/2 mg per day) because he said it just didn’t help for tics. My observation is that tics have increased, but behavior has improved. There are still bouts of willfulness and more negativity than I like, but serious raging anger seems gone and I think he is happier. If the tics are acceptable to him, then they are to me. I don’t think he gets teased at school, just kids being curious, mostly.
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I know this is a little bizarre, but you might want to wee what happens if you take him off milk. I know it has nothing to do with anything, but I found in my son that when I had him stop drinking milk and eating milk products the ragey behavior improved dramatically. He still got mad at all the same things, but the level of anger and bizarreness in his behavior dropped significantly. Usually 3 – 5 days is enough to see if it makes a difference. Might be worth a try – it’s cheap, it’s easy and you don’t have to wait long for results – better than most med trials!! Laurie GaryH82012 <garyh82…@aol.com> wrote in article <19970404060901.BAA22…@ladder01.news.aol.com>… – Hide quoted text — Show quoted text -> My son, 11, has been doing pretty much the same thing as yours. He seems > to get to a point where, although his spirits seem high, he really wants > to burn off some excess energy, but does it inappropriately. My son also > plays roller hockey. It’s really the first sport he has stuck with long > enough to gain some skill. That has been good for him and I encourage it. > The aggresive behavior ( always wanting to hit me, his father, and even > trying to wrestle with his mom are two examples) is not in evidence on the > hockey rink. There are many other players more agressive than he; he seems > to let it out mostly at home with family or close friends. I think it > feels safer to him to do so, and although we come down hard on him for > hurting people in fun, I still believe that many boys are sorting out how > and when aggression is ok. He stopped taking Haldol 2 weeks ago (1 to 1 > 1/2 mg per day) because he said it just didn’t help for tics. My > observation is that tics have increased, but behavior has improved. There > are still bouts of willfulness and more negativity than I like, but > serious raging anger seems gone and I think he is happier. If the tics are > acceptable to him, then they are to me. I don’t think he gets teased at > school, just kids being curious, mostly.
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In article <19970404060901.BAA22…@ladder01.news.aol.com>, garyh82…@aol.com (GaryH82012) wrote: > My son, 11, has been doing pretty much the same thing as yours. He seems > to get to a point where, although his spirits seem high, he really wants > to burn off some excess energy, but does it inappropriately. My son also > plays roller hockey. It’s really the first sport he has stuck with long > enough to gain some skill. That has been good for him and I encourage it. > The aggresive behavior ( always wanting to hit me, his father, and even > trying to wrestle with his mom are two examples) is not in evidence on the > hockey rink. …… >If the tics are > acceptable to him, then they are to me. I don’t think he gets teased at > school, just kids being curious, mostly.
Dear Gary (and Tennanah2), I’m generally a lurker here, so please pardon my ignorance. I’m curious–have any of your kids with aggression problems tried clonidine? In David Comings book, "Tourette Syndrome and Human Behavior," he says that clonidine is his first-line medication for TS. Yes, aggression and fighting are among the TS symptoms. And clonidine is often the preferred medication for ADHDers whose primary problems are aggression and impulsivity (because it is not usually so effective on the attention problems), and for those with TS or tics whose primary problem is ADHD. If you haven’t already asked your doctor, I’d be interested in what they think of the prospects of clonidine for your child. If the tics are acceptable, then maybe a hard-line tic medication (I’m sure this is where my ignorance shines) like Haldol isn’t the best option? Michele
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Tennanah2 wrote: > My 9 1/2 year old son takes 2mg/day haladol. I’m having a hard time > figuring out the line of bad behavior, medication or ts. He FIGHTS > CONSTANTLY. He constantly comes up to other children with a karate type > of action (he does not take karate, he plays roller-blade hockey and > basketball). He kicks my older daughter’s friends, slaps people on the > buttocks, has fights with his 2 "best buddies" who live on the street. I > know alot of his "hat stealing" and things of that nature are just to get > kid’s attention. He sneaks watching wrestling on TV. He also fights in > his sleep. Please someone…is this the medication? Is it a TS thing? > Or just him??? I’m tired of apoligizing to neighbors about this.
First off let me say that I am NOT a doctor so I cannot give you any medical advice. Unfortunately I know almost nothing about haladol so I cannot say whether the meds are causing his behaviour or not. But, based upon what you said in your posting it sounds to me like he has a combination of things going on. One is TS related, one is not. First, the TS related. It sounds like to me he has the symptom of impulsivity. I recognize this because I also have it. It made me do some really strange things before I was diagnosed. I did all sorts of things just trying to fit in, trying to be accepted. Unfortunately it all backfired. One quick point here, I am a black belt in karate and I can tell you that he needs to stop doing this because one day he will run up against someone who DOES know martial arts and they will hurt him. I truly pray this never happens. But again this sounds like his way of trying to be accepted. Now the non TS related. Obviously I do not know your son so all I can do is generalize based upon what you said. There also seems to be a little bit of a bully in him. How big is he in relationship to the other kids? On the other hand if he is smaller then it could possibly be the small man syndrome. i.e. Being more aggressive than the other kids in the hopes that a reputation for being tough will make them think twice before jumping on him. This happened to me since I was only 5′4" and 150 lbs. in high school. I found myself being extremely violent when I did get into a fight in the hopes that word would get around that it was a bad idea to jump on me, that you stood a good chance of really getting hurt in a fight with me. Only you know your son well enough to make this kind of judgement decision. Maybe I have given you some ideas on what to look for. One last thing that you may not want to hear but I think the wrestling on TV is having a very bad effect on his attitude. He gets the idea that these guys are cool and then he trys to imitate them. Does he realize that these guys are putting on a show and that this kind of behaviour in real life would not be tolerated by society? I hope that I have given you some good ideas on what might be happening. Take care Mark
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Michele writes:
I’m generally a lurker here, so please pardon my ignorance. I’m curious–have any of your kids with aggression problems tried clonidine? In David Comings book, "Tourette Syndrome and Human Behavior," he says that clonidine is his first-line medication for TS. Yes, aggression and fighting are among the TS symptoms. And clonidine is often the preferred medication for ADHDers whose primary problems are aggression and impulsivity (because it is not usually so effective on the attention problems), and for those with TS or tics whose primary problem is ADHD. If you haven’t already asked your doctor, I’d be interested in what they think of the prospects of clonidine for your child. If the tics are acceptable, then maybe a hard-line tic medication (I’m sure this is where my ignorance shines) like Haldol isn’t the best option? Hi Michele, Dr. Comings book is several years old, so I am not sure if Clonodine is still the first choice medication. As a Mom, ( not a Doctor) I did not see a reduction in my son’s agression when he was on Clonodine. The Clonodine made him so sleepy that he was barely able to function. As a result the Clonodine was discontinued. Regards, Diane in CT
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> In article <19970404060901.BAA22…@ladder01.news.aol.com>, > garyh82…@aol.com (GaryH82012) wrote:
Michele, If you keep reading Dr. COmings book, you’ll find a section on Seratonin. As I read it, he blames Seratonin for the temper more than the chemicals affected by clonidine (it’s an Alpha 1 blocker) The Seratonin meds (SSRIs) seem to be used pretty widely for anger. At a seminar with Dr. C. he said most of the kids he sees are on 2 to 4 different meds. He uses clonidine more for tics and as a second line med for ADHD. I am not claiming any devine knowledge here. Check out the Seratonin chapter, and see what you think. – Hide quoted text — Show quoted text -> Dear Gary (and Tennanah2), > I’m generally a lurker here, so please pardon my ignorance. I’m > curious–have any of your kids with aggression problems tried clonidine? > In David Comings book, "Tourette Syndrome and Human Behavior," he says > that clonidine is his first-line medication for TS. Yes, aggression and > fighting are among the TS symptoms. And clonidine is often the preferred > medication for ADHDers whose primary problems are aggression and > impulsivity (because it is not usually so effective on the attention > problems), and for those with TS or tics whose primary problem is ADHD. If > you haven’t already asked your doctor, I’d be interested in what they think > of the prospects of clonidine for your child. If the tics are acceptable, > then maybe a hard-line tic medication (I’m sure this is where my ignorance > shines) like Haldol isn’t the best option? > Michele
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- Hide quoted text — Show quoted text -MAM wrote: > In article <19970404060901.BAA22…@ladder01.news.aol.com>, > garyh82…@aol.com (GaryH82012) wrote: > > My son, 11, has been doing pretty much the same thing as yours. He seems > > to get to a point where, although his spirits seem high, he really wants > > to burn off some excess energy, but does it inappropriately. My son also > > plays roller hockey. It’s really the first sport he has stuck with long > > enough to gain some skill. That has been good for him and I encourage it. > > The aggresive behavior ( always wanting to hit me, his father, and even > > trying to wrestle with his mom are two examples) is not in evidence on the > > hockey rink. > …… > >If the tics are > > acceptable to him, then they are to me. I don’t think he gets teased at > > school, just kids being curious, mostly. > Dear Gary (and Tennanah2), > I’m generally a lurker here, so please pardon my ignorance. I’m > curious–have any of your kids with aggression problems tried clonidine? > In David Comings book, "Tourette Syndrome and Human Behavior," he says > that clonidine is his first-line medication for TS. Yes, aggression and > fighting are among the TS symptoms. And clonidine is often the preferred > medication for ADHDers whose primary problems are aggression and > impulsivity (because it is not usually so effective on the attention > problems), and for those with TS or tics whose primary problem is ADHD. If > you haven’t already asked your doctor, I’d be interested in what they think > of the prospects of clonidine for your child. If the tics are acceptable, > then maybe a hard-line tic medication (I’m sure this is where my ignorance > shines) like Haldol isn’t the best option? > Michele
Michele, Tegretol is also an excellent choice to help with the impulsivity and aggression. It has worked wonders for me since those were the two symptoms causing me the most consternation. Mark
