Question:
wow- this is great! I ordered the book! H "TSNW" <tsnwREMOVEC…@optonline.net> wrote in message
news:3D1B3E4A.C06B39C5@optonline.net… – Hide quoted text — Show quoted text -> Hope Roohr wrote: > > I will try and shake it off- I was just wondering how her whole personality > > might change after that meeting. > Hope, you needn’t *expect* a change. My son’s TS surfaced when he was > eight, and his core being never changed — he’s still the same, funny, > warm, sensitive, good-natured, lovable child that he always was. Well, > he’s not exactly a "child" anymore, but … at 13, he is definitely > still an all-round good-natured well-behaved guy, as is his 17-yo > brother. Lyme disease was *FAR* worse on us than TS ever thought of > being! > And besides, knowing about TS will allow you to be proactive, and help > you help your child towards a positive outcome. Just stay away from > "misery loves company" … that stuff does a body bad and drags ya > down! > > What should I look for in OC stuff? > Try to get the Tamar Chansky book, "Freeing your child from > obsessive-compulsive disorder." It’s a great starting place full of > practical parenting stuff, and very useful even if your child does not > have an OCD diagnosis — it tells you what to look for and how to help > with it, and it’s just generally useful and practical parenting info! > And, if you have time, try to spend some time in the Announcements, > Research section of the EZBoard, where you’ll find a lot of research > info which emphasizes the effect you can have on his prognosis. > Remember that the family has a role to play, and that TS is an > interplay between genetics and environment — maybe you can’t change > his genetics, but you can influence the environment he experiences, and > you can make a difference!! > — > Tourette Syndrome – Now What? > http://tourettenowwhat.tripod.com > Alert: forgeries have occurred on alt.support.tourette. > If you get e-mail which seems nasty or suspicious, > it may be a forgery.
Response:
> Unfortunately, this happens all too often, and it can be VERY hard to > shake the misinformation once it has been "officially" imprinted upon > your brain. This is one of the reasons that real life TS support > groups do not thrive.
Hope’s experience was a shame, but just a caveat to TSNW’s comment that it is also not fair to say that "Real life TS support groups do not thrive". That is not necessarily true either! There are many that are very well-attended, with positive and well-informed supportive people (parents and adults and kids groups) that have served people very well in a variety of ways. Clearly if something doesn’t feel right to you, or if someone tries to predict your child’s future, common sense will tell you that is not possible. Hope, don’t believe most of what you heard there…..keep the faith. Whatever comes your way, you and your daughter will handle it. Kids with TS and their families are very resilient, and in my experience, they thrive quite well, in general. And they do it with amazing sensitivity, good hearts, determination, humility, and qualities that in the long run make them terrific people, despite any hardships and adversity living and coping with Tourette throws their way. Trust me. Your name is Hope for a reason. Jo
Response:
I think it was TSNW who wrote: >> Unfortunately, this happens all too often, and it can be VERY hard to >> shake the misinformation once it has been "officially" imprinted upon >> your brain. This is one of the reasons that real life TS support >> groups do not thrive.
Do not thrive? Well, you are entitled to your opinion, but my opinion is that I totally disagree with this statement. My girls and I attend a family oriented TS support group and we are all VERY close. Our group consists of at least 11 adults and about 13 children with TS. There are even more adults if you include spouses and more children if you include siblings. We support each other in many different ways. There are a few that are self conscious about going to public places, such as movie theaters, because of their vocal tics, so we all join up together and go see the new releases together! We have had 3 cookouts in the past 6 months, trade off babysitting each other’s children, and if one of our children are going to be in the spotlight at school, or some other function, the whole gang goes to cheer them on. It is quite a drive for some of us so we do different things together in different locations. We have gone camping, helped one another when a family member faces a tragedy, the older children are there to help tutor younger children if necessary, and we even have a prayer chain of our own. I met some of these wonderful people over 10 years ago, moved away out of state, kept in contact with nearly every one of them, and got back together with them 4 years later when I moved back here. Our group is not endorsed, affiliated, or involved with TSA in any way. It all started with one woman with a child. Over a few years time, she met people with TS and they just all became great friends. My ex husband is who introduced me to the group, just a few years after we were married. He happened to be standing in line at the post office in front of a man who had a child with TS. The man was telling off an old woman who was making rude comments about the child because he was making noises she found annoying. My ex and this man struck up a conversation and exchanged phone numbers. I quickly became a welcomed part of the group and I wouldn’t give up these friends for anything. We don’t meet every month to exchange the newest study information, or to preach what TS is or isn’t. We meet occassionaly to discuss what our next movie is going to be, or whose child is doing what next, etc. We are here to support each other in every day life. I am sorry if you, or anyone else, hasn’t found a support group that helps, but it is not fair to say that "Real life groups do not thrive," because I am here to tell you that at least one of them does! ~~Kim~~
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wow- thank you! I will read and re-read this… "Joanne Cohen" <joco…@attbi.com> wrote in message
news:v7RS8.331891$352.38044@sccrnsc02… – Hide quoted text — Show quoted text -> > Unfortunately, this happens all too often, and it can be VERY hard to > > shake the misinformation once it has been "officially" imprinted upon > > your brain. This is one of the reasons that real life TS support > > groups do not thrive. > Hope’s experience was a shame, but just a caveat to TSNW’s comment that it > is also not fair to say that "Real life TS support groups do not thrive". > That is not necessarily true either! There are many that are very > well-attended, with positive and well-informed supportive people (parents > and adults and kids groups) that have served people very well in a variety > of ways. Clearly if something doesn’t feel right to you, or if someone tries > to predict your child’s future, common sense will tell you that is not > possible. > Hope, don’t believe most of what you heard there…..keep the faith. > Whatever comes your way, you and your daughter will handle it. Kids with TS > and their families are very resilient, and in my experience, they thrive > quite well, in general. And they do it with amazing sensitivity, good > hearts, determination, humility, and qualities that in the long run make > them terrific people, despite any hardships and adversity living and coping > with Tourette throws their way. Trust me. Your name is Hope for a reason. > Jo
Response:
Hi Hope, Caffeine and my son do not mix. He is not allowed to drink caffeinated soda at all — but some really smart person (a teacher) made Dr. Pepper available at the last day of school "float party". He figured he was safe because it was only 1pm. The child was flying for the next day and a half. Part of me wonders if caffeine can really affect someone for 36 hours — but it seems to do it to David. Ironically, David was born 6 weeks premature and was given 10 cc of caffeine for the first 2 months of life to regulate his heart rate! : ) Chocolate on the other hand never really seems to bother him. At least not that I’ve noticed. Ellen (LN) "Hope Roohr" <mamah…@home.com> wrote in message
news:PUGR8.307767$cQ3.14771@sccrnsc01… – Hide quoted text — Show quoted text -> These replies have been manna from Heaven- thank you all so much for taking > the time to reply to a stranger. Let me bring you up to date. Jens tic are > now a month old. She has definately "learned" to not tic much during the > day at all, during her play dates etc, and then usually has a tic-fest in > the early evening at home. Your replies have helped me to take the tic with > a grain of salt. I was especially moved by the mom who write, "my son is > not Tourettes. my son has Tourettes" – simple but it hit me to the core! > Jenny is also very tired alot of the time- from ticcing?, from holding tics > back? > Her mood has been pretty consistant for several days dnow but she did have > a meltdown yesterday (predictable- it was after a 36 hour playdate & > sleepover- whew!) What happened is interesting though- we were doing a > quiet art project and I refolded a piece of paper that she had already > folded. She lost it it -expressed that I was trying to improve her, that I > wanted her to do things better and that she couldnt be perfect. This > floored me! I could not help thinking that she was referring to the change > in her since her tic started. I asked her if she felt I wanted her to do > anything different in her life or her actions but she just cried and cried. > That was very hard for me as Jen is pretty even emotionally and this kind of > catharsis was "new" for us. I think though that it was needed. > Any thoughts? > We are interviewing therapists for her but I am not even clear as to why. I > am not clear about much right now. By the way – I have noticed that alot of > sleep is very key here! We have reduced chocolate to one day a week per the > advice of a friend- any thoughts on that? > Thank you all so much. Hope in Boulder > "Paula" <spock…@bellsouth.net> wrote in message > news:B93B5E7D.DCA6%spockete@bellsouth.net… > > in article Ta9R8.49686$LC3.3805…@bgtnsc04-news.ops.worldnet.att.net, LN > at > > lnm…@worldnet.att.net wrote on 6/22/02 8:06 PM: > > > Hey Paula, > > > My son David is also 10 years old and has what we call a "bottom > tugging" > > > tic. He sort of cups his hand around one of his cheeks, and separates > them. > > > Is this anything similar to what your son does? It comes and goes (last > > > year at this time, he was doing it about 6 or 7 times a minute, but is > now > > > just a "casual" tugger. > > > Ellen (LN) > > Ellen, > > er.. no.. he doesn’t ‘tug’. The best way for me to describe it would be > > ‘contracting and relaxing’ of the ‘butt’ muscles. After his ‘disclosure’ > of > > this ‘non visible’ tic, we teased him that must be why he has such a neat > > ‘bubble butt’, which his two older systers are ‘jealous’ of. 
> > Paula
Response:
>From: TSNW >Kim, I’m sorry my sweeping generalization 
bothered you … and I’m >glad for you that you have a thriving non-TSA support group of 11 >adults. That’s better than most people have !
No offense taken, TSNW. Everyone is entitled to their own opinion, and we seem to share the same opinion about TSA related support groups. Based on my past experience, I have not encounterd a TSA related support group that has been worth attending. When we lived in Indiana, I really missed the "support circle" I had before I moved so I tried a local TSA group there. It really sucked. They claimed to be available if needed for educating schools about TS, but that never happened as far as I know, and the person who seemed to try and take charge of the group, was a neurologist in the area who in my opinion was just out to get more business. I never heard him once suggest that someone without TS should go med free if possible. I made the comment once that Haldol didn’t work for me unless I took Cogentin with it, because of adverse reactions (my jaw locks shut in some sort of a muscular spasm thing). He said if the Haldol works with the cogentin, then that seems like a great option. I hear there is a TSA support group in our area, but haven’t heard much about it either, and by what I have been told, they primarily focus on children only….at least that is what I gathered since it only meets during the school year, not during the summer. I don’t think a support group can be effective if it only focuses on the facts, the newest studies, etc. I think a support group should support people in their every day lives, just like this group does. We call our’s a support circle, not a group. I guess you can say we are a big circle of friends who all have one thing in common, TS, whether it be ourselves, our children, or our family members. Eleven adults seems like many to some, but some of the adults now were just teens when I first joined the circle and they have two of them both have a child of their own who recently developed TS. We even had two 16 year olds when I first joined and they got married just over a year ago. I am very thankful for the dear woman who started this all many many years ago. ~~Kim~~
Response:
Maryann wrote: > TSNW wrote: > > It is really a shame that the TSA won’t work harder to make sure that > > ACCURATE information is put out at support groups. > You’re a very tactful woman, TSNW "shame" isn’t one of the words I’m > thinking of…I won’t be renewing my membership to NTSA this year. I > have very mixed feeling about this because they *are* the only game in > town, but with friends like these…you know the rest.
phhhhhhhhhhhhhhhh !!! tactful ?? Me? (Maryann, about that keyboard and my breakfast … ) I guess I’ve just given up temporarily on ranting about the TSA (the Jankovic article was just the last in a long series of straws), and I just feel a kind of resigned pity for them, and I do just think it’s a crying shame. It’s almost as if they just can’t seem to help their incompetence. They are the only game in town, and they don’t really seem to be interested in serving the TS population. They don’t seem to help the severely impacted, they don’t help the mildly affected, they apparently don’t help prisoners with TS, Survey 2000 showed that they don’t serve adults (and they seem to have taken no action on those survey results), they don’t correct misinformation that’s out there or aggressively disseminate accurate info about TS … with all these years, they just haven’t been able to do all that the ADHD support groups have done, for example … but they sure are good at passing out research bucks in hopes of a "cure." (I still have such a hard time imagining that any potential future "cure" could come without a high associated cost to the patient.) *sigh They mistreat good chapter people and willing volunteers, and end up losing a lot of them, and their support groups are highly dependent upon a cadre of volunteers, who all too often burn out and leave, if they are lucky enough not to be downright abused of (how does one write that sentence without ending in a preposition, Randall?). If you’re lucky enough to be close to one of the few good TSA chapters, you just have to hope and pray that the good folks there don’t get abused and burned out and leave you high and dry. Fortunately, there are good TS support groups on the internet, available to anyone with a computer. That doesn’t help that fellow in prison, though. Kim, I’m sorry my sweeping generalization bothered you … and I’m glad for you that you have a thriving non-TSA support group of 11 adults. That’s better than most people have ! — Tourette Syndrome – Now What? http://tourettenowwhat.tripod.com Alert: forgeries have occurred on alt.support.tourette. If you get e-mail which seems nasty or suspicious, it may be a forgery.
Response:
TSNW wrote: > Hope Roohr wrote: >>Jen got a blood test yesterday – she has been so tired and energy-erratic >>that we decided it is wise to rule out anything metabolic…She was really >>brave! > Hi, Hope … glad to hear she was so brave …
Welcome, Hope! I’m Maryann and my oldest daughter has TS, as well as a full-blown case of adolescence (16 in less than two weeks—eek!). Her tics are on the severe end of the spectrum (most people’s aren;t), so you should keep that in mind… >>I went to my first support group meeting last night- whew!! I came away >>paranoid- > Unfortunately, this happens all too often, and it can be VERY hard to > shake the misinformation once it has been "officially" imprinted upon > your brain. This is one of the reasons that real life TS support > groups do not thrive. Those who have another story to tell quite > simply get to the point where they can’t take it, and they give up and > leave.
That’s certainly been our experience. In our neck of the woods, at least, the TS support group has been far more focused on co-morbids than on TS itself. Not that there isn’t a definate real need for support for those whose kids are dealing with co-morbids, but there are several area OCD support groups, several Chadd and Ad-in groups, a PAL group for parents with bi-polar kids, etc., etc, etc…TSA is the only game in town for TS. My daughter went to a couple of the kids activities, but it was pretty obvious that she made the other moms uncomfortable 
. I threw in the towel for good when a chapter person started questioning me on meds (S* tics on meds, the meds pull the intensity down so they aren’t uncomfortable or impairing). This person was obviously uncomfortable with my daughter’s level of ticcing, and I just thought, sheesh, we need this like a hole in the head. I have heard that there actually are a few really good chapters and support groups out there, unfortunately, I didn’t find our local chapter very helpful. >>was basically told to anticipate Jen’s school life to go down the >>tubes,
Hmmmmm…actually tics weren’t all that much of a problem in school for *S. Many kids suppress their tics in school…S* really couldn’t do this–her tics were prominent from kindergarten, so we had to educate-early and often. I have to say that, regardless of other problems at school, for the most part, staff and other kids ignored tics, the kids usually better than the adults. I guess, indirectly at least, TS caused a problem because S* also has a learning disability (NLD), which for years was downplayed and minimized by both school and clinicians because they felt tics were the primary issue ["lumping/splitting", Blessed? Sometimes I'm a bit slow to catch on ]. > There is a cadre of nay-sayers out there who have had bad school > experiences, and who are sometimes all too happy to spread their > bitterness and "misery loves company" mantra. You need not assume that > your school experience will be bad just because others have had bad > school experiences.
If your daughter has no learning issues, then tics aren’t likely to cause a problem–*if* tics are noticeable at school, and being commented upon, then the school staff should receive some guidance in how to deal with (ignore) them. If necessary, the other students should get some guidance as well. Otherwise, she’s no more likely to have school problems than she was before the diagnosis. As far as tic disorders and learning disabilities, I do think there is probably a higher rate of *diagnosed* learning disabilities…but I also believe that LD’s are underdiagnosed in general, and that kids who are diagnosed with neurological conditions are far more likely to be screened and tested for LD’s. >>that she was going to become OCD, ADHD, possibly BPD and a few other >>initials. > OC tendencies are thought to be an alternate expression of TS. The > rest is bullroar.
There has been some lively discussions here on the concept of "lumping" (TS and co-morbids) vs. "splitting" (treating each as separate conditions). I have found that, just like my local real-life chapter, in many of the online support groups "lumping" tends to carry the day. I can see both sides of the argument–each child is an individual, not a collection of dx’s or initials, but the problem is that lumping every neurobehavioral condition together under an umbrella of "TS" tends to really muddy the waters with regards to treatment. >>I asked if she had to get those things and the answer was , "it >>would be very rare if she didnt". > It is really a shame that the TSA won’t work harder to make sure that > ACCURATE information is put out at support groups.
You’re a very tactful woman, TSNW "shame" isn’t one of the words I’m thinking of…I won’t be renewing my membership to NTSA this year. I have very mixed feeling about this because they *are* the only game in town, but with friends like these…you know the rest. >>They asked if I was medicating and I said >>no – there was no reason to- and one woman actually rolled her eyes (no – it >>was not a tic).
AAAARRRGHHHH!!! When my daughter was finally diagnosed, it wasn’t a surprise to me–pedi had been patting me on the head for about two years prior. I recognize that put me in a far better position than if I had been totally surprised or completely unfamiliar with TS, but I still get shocked by stuff like this. And it’s far, far worse that so many MD’s are completely out of date. The doctor who diagnosed my, then five-year old daughter, suggested Orap. I got a second opinion. We held off on meds for a bit over two years, because, while her tics were certainly noticeable, they weren’t uncomfortable, and weren’t bothering her a bit. That woman had a hell of a nerve! No one has the right to disparage you for choosing not to medicate–or choosing *to* medicate. They don’t live with your family, they aren’t inside your kids’ body…their opinions are irrelevant, and to get this attitude at a "support" group is doubly unconscionable. – Hide quoted text — Show quoted text -> I feel badly that you had to go through this experience. I’ve known > another woman over the years who was given faulty medical info about > her son’s initial TS diagnosis, and it took her over two years to shake > that info and regain her confidence. >>I was also told that as time goes on to expect Jens tic to go away and then >>come back as something totally different, that even though this one isnt so >>bad, the future cones could be wild, and "even funny". > Tics do wax and wane, vary over time, but there is no reason to think > that the next ones must be "wild" or whatever. >>I hope I do not >>sound like I lack compassion because I know that this is all the same >>things- just different levels on the spectrum BUT-I left very anxious! > I hope you can shake it off soon, and again bury yourself in the places > where you started — where you won’t get misinformation. I just hate > the fact that this kind of garbage STILL goes on out there !!! > grrrrrrrrrrrrrrrrrrrrrrrrrrrrrr …
Me too… I’m glad you’re here, Hope. Best wishes, Maryann
Response:
Hope Roohr wrote: > I will try and shake it off- I was just wondering how her whole personality > might change after that meeting.
Hope, you needn’t *expect* a change. My son’s TS surfaced when he was eight, and his core being never changed — he’s still the same, funny, warm, sensitive, good-natured, lovable child that he always was. Well, he’s not exactly a "child" anymore, but … at 13, he is definitely still an all-round good-natured well-behaved guy, as is his 17-yo brother. Lyme disease was *FAR* worse on us than TS ever thought of being! And besides, knowing about TS will allow you to be proactive, and help you help your child towards a positive outcome. Just stay away from "misery loves company" … that stuff does a body bad and drags ya down! > What should I look for in OC stuff?
Try to get the Tamar Chansky book, "Freeing your child from obsessive-compulsive disorder." It’s a great starting place full of practical parenting stuff, and very useful even if your child does not have an OCD diagnosis — it tells you what to look for and how to help with it, and it’s just generally useful and practical parenting info! And, if you have time, try to spend some time in the Announcements, Research section of the EZBoard, where you’ll find a lot of research info which emphasizes the effect you can have on his prognosis. Remember that the family has a role to play, and that TS is an interplay between genetics and environment — maybe you can’t change his genetics, but you can influence the environment he experiences, and you can make a difference!! — Tourette Syndrome – Now What? http://tourettenowwhat.tripod.com Alert: forgeries have occurred on alt.support.tourette. If you get e-mail which seems nasty or suspicious, it may be a forgery.
Response:
in article 3D1B2971.62CF3…@optonline.net, TSNW at tsnwREMOVEC…@optonline.net wrote on 6/27/02 10:04 AM: – Hide quoted text — Show quoted text -> Hope Roohr wrote: >> Jen got a blood test yesterday – she has been so tired and energy-erratic >> that we decided it is wise to rule out anything metabolic…She was really >> brave! > Hi, Hope … glad to hear she was so brave … >> I went to my first support group meeting last night- whew!! I came away >> paranoid- > Unfortunately, this happens all too often, and it can be VERY hard to > shake the misinformation once it has been "officially" imprinted upon > your brain. This is one of the reasons that real life TS support > groups do not thrive. Those who have another story to tell quite > simply get to the point where they can’t take it, and they give up and > leave. >> was basically told to anticipate Jen’s school life to go down the >> tubes,
NO! NO! NO!!! That is not absolute!!!!!!!! My 10 year old is an alpha honor roll student, highly intelligent with ZERO social problems in school. He is fortunate to have peers who overlook his tics. His teachers haven’t even noticed nor has most of the immediate family. In my opinion, what will assist your daughter the most in school and socially is to keep HER educated about TS. My son’s initial fears, before he disclosed the tics (no.. I did not notice them) was that there was something terribly wrong with his body . . . and was scared. Once he understood the ins and outs he was 100% okay. Hubby and I informed CLOSE relatives, and left it up to our son to inform whomever HE wished to disclose this information to. We have put him in control, basically, and allow him to make decisions (with parental guidance). For example, at first diagnosis the neurololgist discussed the medications used to help with TS symptoms, and the first words out of her mouth were: "If his grades are good, and he is not experiencing adverse social or behavioral problems, then the ‘cure’ is worse than the syndrome". She covered the possible side effects, and we decided : No meds. About a year later, an excessive tic developed, nearly constant. The doc asked me if I wished to try medications for the TS. I looked at her and responded: As BJ, it’s his body. My son’s answer was: "No. The tics are part of who I am". So.. that is what is. Mind you, humor plays a huge role in this family in dealing with my son’s tics. We just take it in stride. > There is a cadre of nay-sayers out there who have had bad school > experiences, and who are sometimes all too happy to spread their > bitterness and "misery loves company" mantra. You need not assume that > your school experience will be bad just because others have had bad > school experiences. >> that she was going to become OCD, ADHD, possibly BPD and a few other >> initials. > OC tendencies are thought to be an alternate expression of TS. The > rest is bullroar.
My son is mildly compulsive. However, he exhibits no other ‘tagalong’ syndromes. If these things are not present now.. I really would not be concerned about them. >> I asked if she had to get those things and the answer was , "it >> would be very rare if she didnt".
WRONG!!! Whatever they gave you at that seminar.. trash it..start over!!!! ;-) > It is really a shame that the TSA won’t work harder to make sure that > ACCURATE information is put out at support groups. >> They asked if I was medicating and I said >> no – there was no reason to- and one woman actually rolled her eyes (no – it >> was not a tic).
On this one.. trust your own parental instincts. You and your daughter are the ones to judge whether meds are necessary or even wise. > I feel badly that you had to go through this experience. I’ve known > another woman over the years who was given faulty medical info about > her son’s initial TS diagnosis, and it took her over two years to shake > that info and regain her confidence. >> I was also told that as time goes on to expect Jens tic to go away and then >> come back as something totally different, that even though this one isnt so >> bad, the future cones could be wild, and "even funny". > Tics do wax and wane, vary over time, but there is no reason to think > that the next ones must be "wild" or whatever.
But, some are funny..or at least funny when described by the ticcer. (butt cheek tics). ;-) >> I hope I do not >> sound like I lack compassion because I know that this is all the same >> things- just different levels on the spectrum BUT-I left very anxious! > I hope you can shake it off soon, and again bury yourself in the places > where you started — where you won’t get misinformation. I just hate > the fact that this kind of garbage STILL goes on out there !!! > grrrrrrrrrrrrrrrrrrrrrrrrrrrrrr ….
DITTO! and I’m new at this!! Paula —
Response:
"Hope Roohr" <mamah…@home.com> wrote in message
news:PUGR8.307767$cQ3.14771@sccrnsc01… – Hide quoted text — Show quoted text -> These replies have been manna from Heaven- thank you all so much for taking > the time to reply to a stranger. Let me bring you up to date. Jens tic are > now a month old. She has definately "learned" to not tic much during the > day at all, during her play dates etc, and then usually has a tic-fest in > the early evening at home. Your replies have helped me to take the tic with > a grain of salt. I was especially moved by the mom who write, "my son is > not Tourettes. my son has Tourettes" – simple but it hit me to the core! > Jenny is also very tired alot of the time- from ticcing?, from holding tics > back? > Her mood has been pretty consistant for several days dnow but she did have > a meltdown yesterday (predictable- it was after a 36 hour playdate & > sleepover- whew!) What happened is interesting though- we were doing a > quiet art project and I refolded a piece of paper that she had already > folded. She lost it it -expressed that I was trying to improve her, that I > wanted her to do things better and that she couldnt be perfect. This > floored me! I could not help thinking that she was referring to the change > in her since her tic started. I asked her if she felt I wanted her to do > anything different in her life or her actions but she just cried and cried. > That was very hard for me as Jen is pretty even emotionally and this kind of > catharsis was "new" for us. I think though that it was needed. > Any thoughts? > We are interviewing therapists for her but I am not even clear as to why. I > am not clear about much right now. By the way – I have noticed that alot of > sleep is very key here! We have reduced chocolate to one day a week per the > advice of a friend- any thoughts on that? > Thank you all so much. Hope in Boulder
Hi, Hope! I think you will find that all of us are of the ‘what goes around comes around’ type of philosophy. I know that I, personally, have received so much help and support from these wonderful people that I feel that it is only right that I extend my caring to ‘newbie’ parents who are experiencing the same turmoil I went through after Ben’s diagnosis. I think that what you are looking for in a therapist for your child is someone who is familiar with TS, and someone who will let your child take the lead as far as medication goes. Of course, you are also looking for someone you trust…so hard to make ’snap’ judgements! Do you have a Tourette Syndrome Association chapter near you? They will usually have a list of local doctors who have worked with people with TS. Cutting back on chocolate and sweets may be a good idea, if she is stimulated by them. For my son, ANY stress, including overstimulation, increases tics. As for sleep…I think it is key to a reasonable childhood! Ben sleeps a lot when he is trying to suppress tics, when tics are on a waxing period, and when he is undergoing growth spurts. About your daughter’s meltdown: What a heartbreaking event this must have been for you! But consider that your daughter may have been projecting on you the feelings she is having herself, right now. She is aware that something has changed, and most likely would dearly love to change it back. A good therapist could help her through this transition, and help her keep on loving herself for who she is, tics and all. And you will help, Hope, by being calm and showing her your love through this scary time. Hugs to you both, Benita
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Thank you (do you hear that often enough?) THANK YOU!! I will try and shake it off- I was just wondering how her whole personality might change after that meeting. What should I look for in OC stuff? Again- I so appreciate your wisdom! Hope "TSNW" <tsnwREMOVEC…@optonline.net> wrote in message
news:3D1B2971.62CF34FB@optonline.net… – Hide quoted text — Show quoted text -> Hope Roohr wrote: > > Jen got a blood test yesterday – she has been so tired and energy-erratic > > that we decided it is wise to rule out anything metabolic…She was really > > brave! > Hi, Hope … glad to hear she was so brave … > > I went to my first support group meeting last night- whew!! I came away > > paranoid- > Unfortunately, this happens all too often, and it can be VERY hard to > shake the misinformation once it has been "officially" imprinted upon > your brain. This is one of the reasons that real life TS support > groups do not thrive. Those who have another story to tell quite > simply get to the point where they can’t take it, and they give up and > leave. > > was basically told to anticipate Jen’s school life to go down the > > tubes, > There is a cadre of nay-sayers out there who have had bad school > experiences, and who are sometimes all too happy to spread their > bitterness and "misery loves company" mantra. You need not assume that > your school experience will be bad just because others have had bad > school experiences. > > that she was going to become OCD, ADHD, possibly BPD and a few other > > initials. > OC tendencies are thought to be an alternate expression of TS. The > rest is bullroar. > > I asked if she had to get those things and the answer was , "it > > would be very rare if she didnt". > It is really a shame that the TSA won’t work harder to make sure that > ACCURATE information is put out at support groups. > > They asked if I was medicating and I said > > no – there was no reason to- and one woman actually rolled her eyes (no – it > > was not a tic). > I feel badly that you had to go through this experience. I’ve known > another woman over the years who was given faulty medical info about > her son’s initial TS diagnosis, and it took her over two years to shake > that info and regain her confidence. > > I was also told that as time goes on to expect Jens tic to go away and then > > come back as something totally different, that even though this one isnt so > > bad, the future cones could be wild, and "even funny". > Tics do wax and wane, vary over time, but there is no reason to think > that the next ones must be "wild" or whatever. > > I hope I do not > > sound like I lack compassion because I know that this is all the same > > things- just different levels on the spectrum BUT-I left very anxious! > I hope you can shake it off soon, and again bury yourself in the places > where you started — where you won’t get misinformation. I just hate > the fact that this kind of garbage STILL goes on out there !!! > grrrrrrrrrrrrrrrrrrrrrrrrrrrrrr …. > — > Tourette Syndrome – Now What? > http://tourettenowwhat.tripod.com > Alert: forgeries have occurred on alt.support.tourette. > If you get e-mail which seems nasty or suspicious, > it may be a forgery.
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Hope Roohr wrote: > Jen got a blood test yesterday – she has been so tired and energy-erratic > that we decided it is wise to rule out anything metabolic…She was really > brave!
Hi, Hope … glad to hear she was so brave … > I went to my first support group meeting last night- whew!! I came away > paranoid-
Unfortunately, this happens all too often, and it can be VERY hard to shake the misinformation once it has been "officially" imprinted upon your brain. This is one of the reasons that real life TS support groups do not thrive. Those who have another story to tell quite simply get to the point where they can’t take it, and they give up and leave. > was basically told to anticipate Jen’s school life to go down the > tubes,
There is a cadre of nay-sayers out there who have had bad school experiences, and who are sometimes all too happy to spread their bitterness and "misery loves company" mantra. You need not assume that your school experience will be bad just because others have had bad school experiences. > that she was going to become OCD, ADHD, possibly BPD and a few other > initials.
OC tendencies are thought to be an alternate expression of TS. The rest is bullroar. > I asked if she had to get those things and the answer was , "it > would be very rare if she didnt".
It is really a shame that the TSA won’t work harder to make sure that ACCURATE information is put out at support groups. > They asked if I was medicating and I said > no – there was no reason to- and one woman actually rolled her eyes (no – it > was not a tic).
I feel badly that you had to go through this experience. I’ve known another woman over the years who was given faulty medical info about her son’s initial TS diagnosis, and it took her over two years to shake that info and regain her confidence. > I was also told that as time goes on to expect Jens tic to go away and then > come back as something totally different, that even though this one isnt so > bad, the future cones could be wild, and "even funny".
Tics do wax and wane, vary over time, but there is no reason to think that the next ones must be "wild" or whatever. > I hope I do not > sound like I lack compassion because I know that this is all the same > things- just different levels on the spectrum BUT-I left very anxious!
I hope you can shake it off soon, and again bury yourself in the places where you started — where you won’t get misinformation. I just hate the fact that this kind of garbage STILL goes on out there !!! grrrrrrrrrrrrrrrrrrrrrrrrrrrrrr …. — Tourette Syndrome – Now What? http://tourettenowwhat.tripod.com Alert: forgeries have occurred on alt.support.tourette. If you get e-mail which seems nasty or suspicious, it may be a forgery.
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Jen got a blood test yesterday – she has been so tired and energy-erratic that we decided it is wise to rule out anything metabolic…She was really brave! I went to my first support group meeting last night- whew!! I came away paranoid- was basically told to anticipate Jen’s school life to go down the tubes, that she was going to become OCD, ADHD, possibly BPD and a few other initials. I asked if she had to get those things and the answer was , "it would be very rare if she didnt". They asked if I was medicating and I said no – there was no reason to- and one woman actually rolled her eyes (no – it was not a tic). She also suggested that Jenny have a playdate with her daughter who was there last night. This little girl not only kept touching everyone (yes- I know- its the disorder) but spitting on people and pulling their hair. I thought – yeah right! – a playdate? Anyway – feeling like an incompetant idiot to begin with, I left like a blathering one. In any case the woman that ran the meeting was VERY nice and she will be coming to Horizons to speak with staff. I was also told that as time goes on to expect Jens tic to go away and then come back as something totally different, that even though this one isnt so bad, the future cones could be wild, and "even funny". I hope I do not sound like I lack compassion because I know that this is all the same things- just different levels on the spectrum BUT-I left very anxious!
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On Mon, 24 Jun 2002 15:28:47 GMT, "Hope Roohr" <mamah…@home.com> wrote: We have reduced chocolate to one day a week per the >advice of a friend- any thoughts on that?
Caffeine is a main thing that aggravates the movements: http://www.cspinet.org/new/cafchart.htm
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On Mon, 24 Jun 2002 21:54:04 GMT, "LN" <lnm…@worldnet.att.net> wrote: >Hi Hope, >Caffeine and my son do not mix.
Heh. Just like me and the rest of humanity. Oftentimes, me and the rest of the world are like whisky and wine
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>We have reduced chocolate to one day a week per the >>advice of a friend- any thoughts on that? >Caffeine is a main thing that aggravates the movements:
Speaking of caffeine… can three cans of Diet Pepsi per day make somebody move his legs all the time ? I have a weird problem that’s starting to annoy me. I’ve been a guitar player for more than 10 years now. Every now and then, instead of being relaxed, I catch myself moving my legs all the time (when i’m in a sitting position), as if I was playing drums or following fast beats. As if my subconcious was singing itself songs When I catch myself doing it, I go "why the hell am I doing this at this moment ?". I have no problems sleeping whatsoever. I take three cans of Diet Pepsi per day. No coffee. What’s wrong with me… ;( B
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Hi Paula, I wish David’s tic wasn’t so noticable. He has gotten alot of flack from kids at school about it. I was kind of hoping that there was someone out there with a similar problem that he could relate to. Ellen (LN) "Paula" <spock…@bellsouth.net> wrote in message
news:B93B5E7D.DCA6%spockete@bellsouth.net… – Hide quoted text — Show quoted text -> in article Ta9R8.49686$LC3.3805…@bgtnsc04-news.ops.worldnet.att.net, LN at > lnm…@worldnet.att.net wrote on 6/22/02 8:06 PM: > > Hey Paula, > > My son David is also 10 years old and has what we call a "bottom tugging" > > tic. He sort of cups his hand around one of his cheeks, and separates them. > > Is this anything similar to what your son does? It comes and goes (last > > year at this time, he was doing it about 6 or 7 times a minute, but is now > > just a "casual" tugger. > > Ellen (LN) > Ellen, > er.. no.. he doesn’t ‘tug’. The best way for me to describe it would be > ‘contracting and relaxing’ of the ‘butt’ muscles. After his ‘disclosure’ of > this ‘non visible’ tic, we teased him that must be why he has such a neat > ‘bubble butt’, which his two older systers are ‘jealous’ of. > Paula
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My daughter has just been diagnosed with a tic disorder- she tenses her muscles so her head shakes really fast. Where do I go to get support? I feel alone and panicked H
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Dear Mamahope, There are great books geared for kids with TS. Check out your local bookstore. I’m assuming you’ve seen a good ped. neuro. It is overwhelming at first (it was for me last September) but you’re not alone and though it’s hard sometimes, espec. in the beginning, it’s ok. Just don’t panic. There are plenty of support groups out there. Check information for the nearest Tourettes Help Line and I’m sure someone out there will direct you. As Paula wrote, this is a great place to learn, vent, and get caring support. God bless. Write any time.
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We did see a ped neuro – he diagnosed her – said it could go away or maybe get alot worse and stay forever and every gradation in between. What am I supposed to do with that? Thank you for your replies- I feel completely incompetent and am beginning to educate myself. Hope "gnlwood" <gnlw…@aol.com> wrote in message
news:20020621161407.09628.00000027@mb-cr.aol.com… – Hide quoted text — Show quoted text -> Dear Mamahope, > There are great books geared for kids with TS. Check out your local bookstore. > I’m assuming you’ve seen a good ped. neuro. It is overwhelming at first (it > was for me last September) but you’re not alone and though it’s hard sometimes, > espec. in the beginning, it’s ok. Just don’t panic. There are plenty of > support groups out there. Check information for the nearest Tourettes Help > Line and I’m sure someone out there will direct you. > As Paula wrote, this is a great place to learn, vent, and get caring support. > God bless. Write any time.
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Hola, Hope! I love your name…If I had a girlchild, her name would be Hope. Please go to TSNW’s site for wonderful and reassuring information. Her site helped me tremendously when Ben was first diagnosed in October of 2000. http://tourettenowwhat.tripod.com/ Another wonderful site is: http://www.tourettesyndrome.net/ This one gives great advice on how to help your child’s teachers understand what is going on with her, and gives plenty of information on how to assure that she gets any accomodations she may need in school. It is a very scary and difficult thing to be faced with this task of educating yourself about this disorder. You have come to a good place for help and support; ast has been a wonderful boon for me, and thus for my son. I cried for months, every day, until I finally realized that Ben is not Tourette’s. Ben has Tourette’s, and remains a wonderful, witty, and loving child. The loving part is much more prominent to me than the TS part! He brings me joy daily, and we are both learning a lot about the TS and how to deal constructively with it. The folks here are a wonderful part of my life, now. I am eternally grateful to them for helping me and others (and themselves, bless ‘em!) through the initial panic and occassional roadblocks that arise in our dealings with TS. I’m sure you will be a wonderful addition to our little community. Hugs, Benita "Hope Roohr" <mamah…@home.com> wrote in message
news:epRQ8.282259$cQ3.13414@sccrnsc01… – Hide quoted text — Show quoted text -> We did see a ped neuro – he diagnosed her – said it could go away or maybe > get alot worse and stay forever and every gradation in between. What am I > supposed to do with that? Thank you for your replies- I feel completely > incompetent and am beginning to educate myself. > Hope > "gnlwood" <gnlw…@aol.com> wrote in message > news:20020621161407.09628.00000027@mb-cr.aol.com… > > Dear Mamahope, > > There are great books geared for kids with TS. Check out your local > bookstore. > > I’m assuming you’ve seen a good ped. neuro. It is overwhelming at first > (it > > was for me last September) but you’re not alone and though it’s hard > sometimes, > > espec. in the beginning, it’s ok. Just don’t panic. There are plenty of > > support groups out there. Check information for the nearest Tourettes > Help > > Line and I’m sure someone out there will direct you. > > As Paula wrote, this is a great place to learn, vent, and get caring > support. > > God bless. Write any time.
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Hope Roohr wrote: > We did see a ped neuro – he diagnosed her – said it could go away or maybe > get alot worse and stay forever and every gradation in between. What am I > supposed to do with that?
Hi, Hope … glad you found your way to ast! His statement is accurate — it *could* go away, get worse, and everything in between. But the studies done to date show that, in the *vast* majority of cases, and regardless of highest ever tic severity, tics completely remit or significantly improve for most children as they pass through adolescence. What the studies don’t even address is that education and knowledge are the best treatments, and may be all that is needed to help your child to a positive outcome. In one study, tics improved or remitted for 86% of the children studied, and many of them had severe symptoms at some point in their history. In that study, only 11% of the birth cohort had moderate to marked levels of tic severity at the end of the second decade of life, and tic symptoms for a majority were minimal or absent by the age of eighteen. No one can predict what will happen with your child, but I find it more useful to look at what does happen for *most* children rather than what *could* happen for a very small minority. I hope you can take comfort from the statistics. There are two links on the EZBoard to this info http://pub23.ezboard.com/ftourettesyndromenowwhatfrm5.showMessage?top… http://pub23.ezboard.com/ftourettesyndromenowwhatfrm5.showMessage?top… Glad to see you here! — Tourette Syndrome – Now What? http://tourettenowwhat.tripod.com Alert: forgeries have occurred on alt.support.tourette. If you get e-mail which seems nasty or suspicious, it may be a forgery.
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Hey Paula, My son David is also 10 years old and has what we call a "bottom tugging" tic. He sort of cups his hand around one of his cheeks, and separates them. Is this anything similar to what your son does? It comes and goes (last year at this time, he was doing it about 6 or 7 times a minute, but is now just a "casual" tugger. Ellen (LN) "Paula" <spock…@bellsouth.net> wrote in message
news:B939EF44.D983%spockete@bellsouth.net… > in article epRQ8.282259$cQ3.13414@sccrnsc01, Hope Roohr at
mamah…@home.com – Hide quoted text — Show quoted text -> wrote on 6/21/02 9:36 PM: > > We did see a ped neuro – he diagnosed her – said it could go away or maybe > > get alot worse and stay forever and every gradation in between. What am I > > supposed to do with that? Thank you for your replies- I feel completely > > incompetent and am beginning to educate myself. > Hope, > Much will depend on your child. From reading here, I have learned that > there are varying degrees. My son is now ten years old and started with > tics at around age 8. What we have experienced in the past two years with > him has been waxing and waning of existing tics, new ones come, old ones go. > Then it changes. > We deal with it here with lots of humor. > My best advice is: > If your child is doing well in school, is not experiencing any major social > problems associated with the tics, then… forget about it as a ‘major > issue’ in your and your child’s lives. Tics are part of who your child is, > and that is now a part of your family. > Note: > Once my son understood what the tics were, he was fine with them. He even > recently declined medication to calm eye tics that were ‘bothering mom more > than they were bothering him’. (I was concerned that the eye tics would > interfere with his reading.. but..they don’t). And, our son does keep us > rolling on the floor laughing when he describes some of his tics, > specifically, the ‘butt cheek tics’. ;-) > So, again, relax. > If your child would like to communicate with my child with TS, your child is > welcome to do so. Just put BJ in the subject line of the email. I think > "peer support" is great. ;-) > Paula
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These replies have been manna from Heaven- thank you all so much for taking the time to reply to a stranger. Let me bring you up to date. Jens tic are now a month old. She has definately "learned" to not tic much during the day at all, during her play dates etc, and then usually has a tic-fest in the early evening at home. Your replies have helped me to take the tic with a grain of salt. I was especially moved by the mom who write, "my son is not Tourettes. my son has Tourettes" – simple but it hit me to the core! Jenny is also very tired alot of the time- from ticcing?, from holding tics back? Her mood has been pretty consistant for several days dnow but she did have a meltdown yesterday (predictable- it was after a 36 hour playdate & sleepover- whew!) What happened is interesting though- we were doing a quiet art project and I refolded a piece of paper that she had already folded. She lost it it -expressed that I was trying to improve her, that I wanted her to do things better and that she couldnt be perfect. This floored me! I could not help thinking that she was referring to the change in her since her tic started. I asked her if she felt I wanted her to do anything different in her life or her actions but she just cried and cried. That was very hard for me as Jen is pretty even emotionally and this kind of catharsis was "new" for us. I think though that it was needed. Any thoughts? We are interviewing therapists for her but I am not even clear as to why. I am not clear about much right now. By the way – I have noticed that alot of sleep is very key here! We have reduced chocolate to one day a week per the advice of a friend- any thoughts on that? Thank you all so much. Hope in Boulder "Paula" <spock…@bellsouth.net> wrote in message
news:B93B5E7D.DCA6%spockete@bellsouth.net… – Hide quoted text — Show quoted text -> in article Ta9R8.49686$LC3.3805…@bgtnsc04-news.ops.worldnet.att.net, LN at > lnm…@worldnet.att.net wrote on 6/22/02 8:06 PM: > > Hey Paula, > > My son David is also 10 years old and has what we call a "bottom tugging" > > tic. He sort of cups his hand around one of his cheeks, and separates them. > > Is this anything similar to what your son does? It comes and goes (last > > year at this time, he was doing it about 6 or 7 times a minute, but is now > > just a "casual" tugger. > > Ellen (LN) > Ellen, > er.. no.. he doesn’t ‘tug’. The best way for me to describe it would be > ‘contracting and relaxing’ of the ‘butt’ muscles. After his ‘disclosure’ of > this ‘non visible’ tic, we teased him that must be why he has such a neat > ‘bubble butt’, which his two older systers are ‘jealous’ of. > Paula
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