New TS Parent
Question:
Fear not. My husband grew up not knowing why he had such movements. He was raised in a family that never discussed anything. He was made fun of by other children, but grew up to be a very successful person. He was diagnosed ten years ago at age 34. We have been married more than ten wonderful years and have a wonderfully bright 6yr old. It is a well known fact that people with Tourett’s tend to have a very high ability for mathematics. You will find many Tourette adults who are engineers, nuerologists, architects (as my husband is). My husband marginally got through school then went on to graduate from Syracuse & Harvard with honors. He is now a very gifted and nationally recognized architect. Don’t look at this as a closed door, look at this as an opporunity to know that your child has a wonderful gift. I suggest that you busy his mind with logic games, puzzles and challenges of the like. The more the challenge the more he will focus and his tics will wain as he works. Take a look at his diet, try to eliminate any stimulants such as sugar and caffene. I know that if my husband has more than one cup of coffee his tics are more frequent. When he is relaxed and stree fee his tics are very infrequent. Please feel free to contact us if you have any questions, my husband would be happy to talk with you. — ************************************************** JANDURA Reston, VA 20194 (703) 925-0095 EMail: m40g…@idt.net **************************************************
Response:
About 30% of those with TS have also been dx’d with difficulties in the area of sensory integration. It might take the form of hypersensitivity to noise, touch, or pain. Coordination-related difficulties may also be associated. Some (not all) occupational therapists have specialized training and are certified to work with individuals who have difficulties in this area. This intervention may be very helpful. However, I had not heard of SI therapy resulting in reduction or elimination of tics. The nature of tics is that they wax and wane as well as change over time. It is possible that SI therapy may have resulted in improved functioning and have reduced possible related feelings of stress due to these difficulties. Time will tell. Many show increased tics while under stress; however, some also show increased tics at times of relaxation as well–when ‘bored’ or not involved in physical activity. Each is different.
Response:
>(and what would the actual diagnosis for that be?) >Regards, >Leslie
My son’s dx is 781.3 — whatever that is !!! I know it’s something about low muscle tone, although he also could have a dx having something to do with his fine motor control and handwriting.
Response:
BlessedBy2 wrote: > >(and what would the actual diagnosis for that be?) > >Regards, > >Leslie > My son’s dx is 781.3 — whatever that is !!! I know it’s something about low > muscle tone, although he also could have a dx having something to do with his > fine motor control and handwriting.
According to International Classification of Diseases (http://pblsrv.up.ac.za/icd9/alpha/2indexc.html or http://cedr.lbl.gov/icd9.html) 781.3 is the dx for clumsiness. And I can’t find 781.3 in DSM-IV or DSM-IIIR. — I | Randall Bart mailto:Barti…@usa.spam.net L |/ o | Barti…@worldnet.att.spam.net Barti…@hotmail.spam.com v | 1-818-985-3259 Please reply without spam e | Y |/ Panic in the Year Zero Zero: http://members.aol.com/PanicYr00 o | Can you solve it before the 28th term: u |/ http://members.aol.com/PanicYr00/Sequence.html
Response:
>According to International Classification of Diseases >(http://pblsrv.up.ac.za/icd9/alpha/2indexc.html or >http://cedr.lbl.gov/icd9.html) 781.3 is the dx for clumsiness. >And I can’t find 781.3 in DSM-IV or DSM-IIIR. >– >I | Randall Bart
AKA "Muscular Incoordination." LOL "Clumsiness" and "disease" in the same sentence reminds me of Pieter’s diagnosis for a solar eclipse — Inconstant Illumination Disorder!!! LOL Clumsiness is certainly more practical, as well as a fitting description of my son’s many different expressions of neuromuscular incoordination! Joking aside, the OT rattled off four or five diagnoses relating to his neuromuscular difficulties, his fine motor coordination and his gait (he was described by a teacher as looking like none of his joints are connected when he walks — there’s a diagnosis for that!) There was also something about his problems when his hands had to cross midline and the fact that he hasn’t established hand dominance. And that’s without including ocular control, as that is being handled by eye doc. I asked her to pick the most benign for insurance purposes, and she chose 781.3. So now he’s officially clumsy!! At any rate, I don’t know how common SI issues are in TS, but I wanted to point out that they involve more than the widely-known "symptom" of sensitivity to labels on clothing, sounds, being touched, certain fabrics, etc. (My son doesn’t have those sensitivities.) I can’t put my hands on a statistic, but because the range of possible diagnoses covered under sensory integration is so broad, it would not surprise me at all to find out that 30% or more of kids with TS have one or more of the many possible diagnoses. A separate question is "Does OT help?" I don’t know for the touch issues, but for my son’s neuromuscular issues, the progress is already evident. I just worry when I hear people saying it helps with tics, because that is harder to determine.
Response:
Leslie wrote:>>Leslie
(who’s beginning to think that too many different problems are all being described by one label and that we need some precision here…)<< –Sensory Integration issues tend to occur with autism spectrum disorders, including Asperger’s Syndrome as well as other PDD (pervasive developmental disabilities) along with other conditions, including TS. Recent research findings (through newer brain imaging techniqies) have resulted in the discovery of an incredible amount of new information regarding neurologic functioning. The recent article in Newsweek may best describe what is occuring. "Disorders" appear to follow a spectrum or continuum and variations of what is or isn’t normal are not that clear-cut. There is also overlap of symptomatology for given, labelled disorders or conditions. Sensory integration related difficulties are considered as "medical." Treatment for such is generally provided by occupational therapists certified with a specialty in this area. (Not all OT’s have been trained in this area). Some of the techniques included in the treatment of these difficulties have been included in the programs of special need students by adaptive physical education teachers–at least in California. Although there is some overlap–Sensory Integration related difficulties are now classified as a medical condition which is an exclusive realm for treatment by Occupational Therapists–who are considered medical practioners. Although Adaptive Physical Education teachers have included some sensory integration techniques in their programs, they are considered educators. Medical insurance may cover the former but not the latter–even though there is some overlap. Some states provide limited medical services in their education programs which may or may not include Occupation Therapy for students having difficulty in the area of sensory integration.
Response:
Leslie wrote: >I don’t have my copy here, but I’ll bet you dollars to donuts that you >won’t find any hard evidence showing 30% being diagnosed with SI >problems — but I’d need to see exactly what they’re considering SI >problems…?
I have my extensive <g> library right here at my fingertips, and I can’t find a statistic quoted. I do think that an understanding of everything that SI comprises (some of which we haven’t even touched on here) makes the 30% look like a reasonable number, even if Fangbasher’s reference was packed away by the movers or carted off by the ants !!!
Response:
>Sensory >integration related difficulties are considered as "medical." Treatment for >such is generally provided by occupational therapists certified with a >specialty in this area. (Not all OT’s have been trained in this area). Some >of the techniques included in the treatment of these difficulties have been >included in the programs of special need students by adaptive physical >education teachers–at least in California. Although there is some >overlap–Sensory Integration related difficulties are now classified as a >medical condition which is an exclusive realm for treatment by Occupational >Therapists–who are considered medical practioners.
It is also provided in all of our local public schools by the certified OT. In fact, the OT group that provides my son’s OT has areas set up in gyms and auditoriums of all local public schools. They come in weekly to provide OT in the schools. We found them through my son’s best friend, who has NO special need other than the SI problems identified. Although we have arranged for this service privately, my insurance company has never questioned the treatment – they routinely pay the claims, which are submitted on the same form as we use for medical Dr..
Response:
I wrote: >>AKA "Muscular Incoordination." Leslie wrote: >How do you get from that to "sensory integration" problem?
Sensory Integration has to do with all of the information we receive about the world through our sensory sytems. These include the usual senses of taste, small, sight and sound, but "most of us do not realize that our nervous systems also sense touch, movement, force of gravity, and body position." In addition to the better known senses, Sensory Integration therapy also involves the tactile and vestibular senses and proprioception. "The vestibular sense responds to body movement through space and change in head position. It automatically coordinates the movements of one’s eyes, head and body. If this sense were not functioning well, it would be impossible for a student to look up at the blackboard and back down at her paper without losing her place. It would be difficult to walk along a rocky path without falling, or to balance on one foot long enough to kick a soccer ball. The same vestibular sense is central in maintaining muscle tone, coordinating the two sides of the body, and holding the head upright against gravity." "It is proprioception that makes it possible for a person to skillfully guide his arm or leg movements without having to observe every action. When proprioception is functioning efficiently, an individual’s body position is automatically adjusted to prevent falling out of a chair. Proprioception also allows objects such as pencils, buttons, spoons and combs to be skillfully manipulated by the hand. Because of efficient proprioception, a step off of the curb is smoothly synchronized with the following step on level ground." "Vestibular system: The sensory system that responds to the position of the head in relation to gravity and accelerated or decelerated movement; it integrates neck, eye, and body adjustments to movement." "Proprioception: From the Latin word for ‘one’s own.’ Refers to perception of sensation from the muscles and joints. Proprioceptive input tells the brain when and how muscles are contracting or stretching, and when and how the joints are bending, extending or being pulled or compressed. This information enables the brain to know where each part of the body is and how it is moving." I hope that’s enough to provide the link between sensory input and neurological diagnoses ("clumsiness") without being too long. I skipped over a lot of stuff that doesn’t happen to apply to my son. On the other hand, I could go on and list everything else mentioned … From "A Parent’s Guide to Understanding Sensory Integration," by Sensory Integration International, Inc. Torrance, CA, website previously provided. The other two pamphlets I have are "Understanding Sensory and Motor Challenges in the Classroom" (same source) and "The Relationship of Learning Problems and Classroom Performance to Sensory Integration", Norma J. Quirk, MS, OTR with an address in NJ. Both of these sources base their writing on the work of A. Jean Ayres, PhD, OTR, FAOTA.
Response:
Leslie wrote: >>I think someone (not me) should list exactly what is meant by
"sensory integration problem" in terms of the diagnoses that would presumably show a sensory integration problem. << I will send article re. Sensory Integration from Learning Disabilities Assn. Journal in 2 parts– Part I: "Sensory Integration" "The Hidden Disorder" Elizabeth Anderson & Pauline Emmons "Elizabeth Anderson, holds an MA in Elementary Education and Pauline Emmons hods a BS in Biology and a BA in Psychology." –from LDA (Learning Disabilities Association) Newsbriefs, Volume 31, No.1, January/February 1996, pp. 3,4, and 13 "’Look Mommy, we’re super heroes,’ shouts my 5 year-old from his swing. ’I'm Batman and Ellie is Batwoman.’ My eyes fill with tears. YOU ARE BOTH SUPER…a lump in my throat prevents me from finishing the sentence with what is in my heart. You see, Dylan and Ellie are swinging form a suspended apparatus in the Rehabilitation Department of a local hospital. The woman supervising their play is an occupational therapist who specializes in pediatric sensory integration. Although many people are familiar with the senses involved in taste, smell, sight, and sound, ,ost do not realize that the nervous system also senses touch, movement, force of gravity and body position.Each of these senses is critical in our ability to function day-to-day. "When a child’s sensory integration does not respond appropriately to incoming senstions it is referred to as Sensroy Integration Disorder. While this disorder affects an untold number of children, it is a relatively new concept in the field of child development. Therefore, it is not well known to physicians, teachers, or parents. Although the mechanics of the underlying dysfunction are still not clear to the medical and scientific communities, the resultant behaviors can be catalogued and diagnosed. This is very important, as early diagnosis and proper treatment greatly diminsh the effects of a sensory integration disorder. Because of the complex nature of Sensory Integration Disorder, a poor self-image, combined with emotional, and behavioral problems, can result in both academic and social disasters. This risk is so great that the time has come to bring Sensory Integration Disorder to the forefront of behavioral problems and learning disabilities. What are the main characteristics of a child with Sensory Integration Disorder? What red flags should parents be aware of, that might indicate that their child, or a child they know, may have Sensory Integration problems? Here are the stories of Dylan and Ellie, two children who suffer from Sensory Integration Disorder. By sharing their journey’s of pain, courage, perseverance and hope, you can catch a glimpse into the life of a child for whom the world is a confusing, overwhelming and often frightening place. It is also about the struggle of two families who have been forced to create order from chaos and gain strength from weakness. DYLAN’S STORY As an infant Dylan displayed many odd behaviors. From the beginning, Dylan, found touch to be aversive. He wanted to have Mom and Dad in sight, but did not wish to be cuddled. Dylan was constantly wakeful, only taking 20 minute POWER naps throughought the day and night. In fact, only a layer of 100% cotton clothing and no blanket resulted in his sleeping longer than 5 minutes. Strangely, Dylan never appeared to become agitated when he was physically cold; he enjoyed it. Baths were luke-warm at best, otherwise, he would scream as though he were boiling in oil. Similarly if his bottle or food were even warm, they would be rejected. It was upon reaching toddlerhood that these odd behaviors became pronounced. No longer was Dylan just quirky. A GUT feeling that something was wrong began to gnaw at me daily as I saw Dylan’s sensory problems become amplified. While Dylan continued to demand cold food, cold baths and cold sleeping conditions, now anything with an even remotely crunchy texture would also be rejected. In addition, washing Dylan’s hair was akin to a world class wrestling event. Because it was such an ordeal my husband flatly refused to bathe Dylan and avoided even feeding his son. I was appalled to realize that I no longer served hot meals! Dylan’s Sensory Integration Disorder had come to rule our lives, and we had never even heard of the term. By the time Dylan was two and a half, I began to seek help. I was not sure what was wrong, but I knew that some form of intervention was needed. Thankfully, I had the support of my mother and a couple of close frineds. The first two or three Professional sources I sought out were less than helful. The tacit inference was that I wanted a perfect child and was looking for something to be wrong. Finally, my break came when a non-judgmental neighbor suggested that if I had concerns regarding a pre-school child, I should contact the local Early Childhood Center. I did just that the next day and was relieved to find an informed and sympathetic ear. I was instructed to phone a local agency and speak with someone about having Dylan evaluated by a developmental specialist and an occupational therapist. Appointments for the evaluations were set up, and much to my surprise, they were performed at no cost to me. At age 3, Dylan began receiving occupational and physical therapy several times a week as a direct result of the evaluations he had undergone. Now a pre-schooler, his sensory integration problems became more defined and easier to pinpoint. Of course, it was also at this time that Dylan became one of the luckiest children in the world of therapy. His occupational therapist truly thinks he is special. Eileen loves him, and in turn, Dylan absolutely adores her. It was Eileen who assured me that I was not crazy when I described Dylan as being wired differently. In fact, I was shocked when Eileen would ask very pointed questions about Dylan’s behaviors, and then respond with a THAT’S WHAT I THOUGHT YOU WOULD SAY. She knew that even though Dylan hated to be touched, loathed swings, and practically went unconscious when asked to ride on the see-saw, that he would also seek out certain sensations in an almost obsessive way. This is a child who does not drink carboanated beverages, eat Oreos (too crunchy), or consume an ice-cream cone (way too crunchy). Yet, the longer and faster the slide, the better. He loves the feel of the porcelain-finished bath-tub, and actually asks to sleep there. But, this same child also reacts to the rubber, texturized bath mat in this tub as if it were a bed of thorns.
Response:
continued ("Sensory Integration" "The Hidden Disorder" Elizabeth Anderson & Pauline Emmons) Part 2: ELLIE’S STORY I was thrilled with the arrival of my second daughter, Ellie. It was a hot August and I had envisioned picnics at the park and walks using the double stroller. Yet, almost immediately I knew there was something very different about this baby. I began realizing how strong this GUT feeling was when Ellie was about two months old. It was at this point I confided in a friend. SHE CRIES ALL THE TIME AND NEVER SLEEPS. SHE GETS SO FRANTIC IN HER CARSEAT SHE SCRATCHES HER FACE UNTIL IT BLEEDS. SHE HAS TROUBLE NURSING AND TAKES AN HOUR TO DRINK A BOTTLE. I nodded in agreement that, yes, some babies are fussier than others, but inside I was screaming, BUT, WHY CAN’T I COMFORT MY OWN BABY? WILL I EVER HAVE QUALITY TIME WITH HER SISTER AGAIN? I felt as if someone had turned my world upside-down. So, I focused on the next developmental step to provide a turning ppoint in our lives…maybe when she can crawl…maybe when she can walk…but, instead of a clear turn in the road there were only rolling hills and deep valley I knew from my first daughter that toddlers are unpredictable. But, nothing had prepared me for the emotional fragility and intense mood swings of Elli–happy one minute–huddled in a corner hysterical the next. As a fmaily we treaded lightly around Ellie knowing instinctively how weak the structure supporting her world was. Everything was a huge battle, washing and combing her hair, brushing her teeth, getting her dressed, eating a meal, sharing a toy. Only unlike her sister who had shown typical defiance, Ellie’s refusals were desperate attempts at avoidance and completely devoid of reason. A chasm was developing over which we could not reach. At this time my third daughter wa born and in the incresingly loud, hectic nature of our household Ellie sunk into a state of despair. While everyone played games at ther sister’s birthday party, Ellie would sob on my shoulder. If the baby cried, Ellie would cover her ears and hide. The bath water felt burning hot, the tags in her clothing hurt her, she fell out of chairs. and was terrified when the car turned a corner. The birth of my son coupled with Ellie beginning pre-school finally gave me the means of comparison to validate years of concern. I stopped asking questions and began demanding answers. While fine motor and speech delays were obvious leads during Ellie’s evaluations, the answer I’d been looking for came with a call from New Hampshire. A friend had heard about the trouble I was having with Ellie and wondered if she could ask a few questions. after an hour on the phoneI stood in disbelief when this Sensory Integration Specialist said, LIZ, I THINK SHE’S ONE OF MY KIDS. Here was a woman who could accurately describe my child’s behavior without ever having met her. With this friend’s guidance, I was able to locate an occupational therapist on my area, who is also certified in Sensory Integration. The succcess of this therapy has completely changed our lives. What about Dylan and Ellie now? They both continue to receive therapy several times a week. Does therapy continue to make a differnce in their lives? It certainly does. Dylan and Ellie are no longer just children struggling to be normal–they’re SUPER HEROES, who enjoy sharing a swing! What about their families? They take each day as it comes and have learned to appreciate the children not for what they can or cannot do, but for who they are and the joy they bring. SIGNS OF SENSORY INTEGRATION DISORDER <Overly sensitive to touch, movement, sights, or sounds * Under-reactive to sensory stimulation <activity level that is unusually high or unusually low * Coordination problems * Delays in speech, language, motor skills or academic achievement * Poor organization of behavior * Poor self-concept OCCUPATIONALL THERAPY FOR SENSORY INTEGRATION Because a child with a Sensory-Integration Disorder cannot efficiently process the sensations associated with PLAY, Sensory Integration therapy creates an environment specifically designed to allow this to occur. Therefore, the primary focus of therapy becomes providing and controlling the sensory input for the child. To accomplish this, therapy entails using the whole body and all of the senses, so that the entire brain is involved. While it may appear as though the children are PLAYING on a platform, trapeze, bolster swing or other apparatus, in reality the children are organizing their nervous systems. Organizing the sensations coming from the body and then being able to respond to these sensations appropriately is the goal of therapy. When therapy is successful, children almost automaticaly are able to process ssensory information more efficieently. This can usualoly be seen in improved motor skills, social interactions and language development. Children may seem more PUT TOGETHER and be much easier to live with. These positive results then carry forth from the home into the clasroom."———————————————- "Elizabeth Anderson, holds an MA in Elementary Education and Pauline Emmons hods a BS in Biology and a BA in Psychology." –from LDA (Learning Disabilities Association) Newsbriefs, Volume 31, No.1, January/February 1996, pp. 3,4, and 13
Response:
blessed…@aol.com (BlessedBy2) wrote: >>According to International Classification of Diseases >>(http://pblsrv.up.ac.za/icd9/alpha/2indexc.html or >>http://cedr.lbl.gov/icd9.html) 781.3 is the dx for clumsiness. >>And I can’t find 781.3 in DSM-IV or DSM-IIIR. >>– >>I | Randall Bart >AKA "Muscular Incoordination."
How do you get from that to "sensory integration" problem? >LOL "Clumsiness" and "disease" in the same >sentence reminds me of Pieter’s diagnosis for a solar eclipse — Inconstant >Illumination Disorder!!! LOL Clumsiness is certainly more practical, as well >as a fitting description of my son’s many different expressions of >neuromuscular incoordination! >Joking aside, the OT rattled off four or five diagnoses relating to his >neuromuscular difficulties, his fine motor coordination and his gait (he was >described by a teacher as looking like none of his joints are connected when he >walks — there’s a diagnosis for that!) There was also something about his >problems when his hands had to cross midline and the fact that he hasn’t >established hand dominance. And that’s without including ocular control, as >that is being handled by eye doc. I asked her to pick the most benign for >insurance purposes, and she chose 781.3. So now he’s officially clumsy!!
Those are all neuro diagnoses. >At any rate, I don’t know how common SI issues are in TS, but I wanted to point >out that they involve more than the widely-known "symptom" of sensitivity to >labels on clothing, sounds, being touched, certain fabrics, etc. (My son >doesn’t have those sensitivities.) I can’t put my hands on a statistic, but >because the range of possible diagnoses covered under sensory integration is so >broad, it would not surprise me at all to find out that 30% or more of kids >with TS have one or more of the many possible diagnoses.
I think someone (not me) should list exactly what is meant by "sensory integration problem" in terms of the diagnoses that would presumably show a sensory integration problem. >A separate question is "Does OT help?" I don’t know for the touch issues, but >for my son’s neuromuscular issues, the progress is already evident. I just >worry when I hear people saying it helps with tics, because that is harder to >determine.
Leslie (who’s beginning to think that too many different problems are all being described by one label and that we need some precision here…)
Response:
…making a note to remind my husband to take out the garbage!! I think that all of the Sensory Integration type issues are probably relatively common — it’s back to the old argument that these things may be just as common in kids with TS as kids without TS or kids with AS, etc. Which is why a 30% number wouldn’t surprise me. The list of traits is long enough that many folks would fit in there somewhere!! Funny, my son learned to ride a bike very very young! – Hide quoted text — Show quoted text -Rporter wrote: >Hey! It’s AS that’s supposed to have all those kinds of problems >associated with it! Clumsiness, learning to ride a bike later if at all, >problems being able to perform in sports, problems tying shoes (resulting >in the purchase of many vleco shoes), a shuffling gait
Response:
In article <19980127185300.NAA20…@ladder03.news.aol.com>, blessed…@aol.com (BlessedBy2) wrote: > Funny, my son learned to ride a bike very very young!
As I recall, I received my first two-wheeler for Christmas when I was 5. Shortly thereafter my mother attempted to get me to ride it by putting me on the seat and then pushing the bicycle forward to get it going. She told me to pedal but I was too busy trying to keep my balance, which I could only do by keeping the front wheel straight. There was this telephone pole right in front of me… maybe I should have learned on a girl’s bike, anyway, it was years before I tried again. I think maybe I started riding one by eight or nine. My son rode a bicycle a couple of times at the age of 14, but that’s about it. No competitors for the Tour de France here! (um… blessed… did you have fish recently?… maybe it’s that sensitive nose thing or maybe I’m smellin’ my upper lip…. ewwwwww!) ——————-==== Posted via Deja News ====———————– http://www.dejanews.com/ Search, Read, Post to Usenet
Response:
fangbas…@aol.com (FANGBASHER) wrote: >fangbas…@aol.com (FANGBASHER) wrote: >>About 30% of those with TS have also been dx’d with difficulties in the area >of >>sensory integration. >[snip] >Leslie E. Packer wrote: >"Whoa. I have to ask: could you provide some research cites to back >up the above? I am not aware of any hard research that would support >the claim that 30% of patients who have TS are also diagnosed with SI >difficulties" >–I believe this information was in Tracey Haerle’s book, CHILDREN WITH >TOURETTE SYNDROME. I don’t have this book to review (it is at our other house >and not readily accessible)–but will try and locate another copy soon.
I don’t have my copy here, but I’ll bet you dollars to donuts that you won’t find any hard evidence showing 30% being diagnosed with SI problems — but I’d need to see exactly what they’re considering SI problems…?
Response:
fangbas…@aol.com (FANGBASHER) wrote: >About 30% of those with TS have also been dx’d with difficulties in the area of >sensory integration.
[snip] Leslie E. Packer wrote:
"Whoa. I have to ask: could you provide some research cites to back up the above? I am not aware of any hard research that would support the claim that 30% of patients who have TS are also diagnosed with SI difficulties" –I believe this information was in Tracey Haerle’s book, CHILDREN WITH TOURETTE SYNDROME. I don’t have this book to review (it is at our other house and not readily accessible)–but will try and locate another copy soon.
Response:
In article <19980127144100.JAA22…@ladder03.news.aol.com>, blessed…@aol.com (BlessedBy2) wrote: – Hide quoted text — Show quoted text -> Joking aside, the OT rattled off four or five diagnoses relating to his > neuromuscular difficulties, his fine motor coordination and his gait (he was > described by a teacher as looking like none of his joints are connected when he > walks — there’s a diagnosis for that!) There was also something about his > problems when his hands had to cross midline and the fact that he hasn’t > established hand dominance. And that’s without including ocular control, as > that is being handled by eye doc. I asked her to pick the most benign for > insurance purposes, and she chose 781.3. So now he’s officially clumsy!! > At any rate, I don’t know how common SI issues are in TS, but I wanted to point > out that they involve more than the widely-known "symptom" of sensitivity to > labels on clothing, sounds, being touched, certain fabrics, etc. (My son > doesn’t have those sensitivities.) I can’t put my hands on a statistic, but > because the range of possible diagnoses covered under sensory integration is so > broad, it would not surprise me at all to find out that 30% or more of kids > with TS have one or more of the many possible diagnoses.
Hey! It’s AS that’s supposed to have all those kinds of problems associated with it! Clumsiness, learning to ride a bike later if at all, problems being able to perform in sports, problems tying shoes (resulting in the purchase of many vleco shoes), a shuffling gait (wearing out shoes funny, like around the outside edges and being scuffed-up a lot), sensitivity to clothing (resulting in the wearing of a lot of old holey T-shirts and pants and removal of tags)and perhaps sensitivity or lack there of to hot and cold resulting in baths of tepid rather than hot water or the removal of both shoes and socks while sitting in a car seat in 9 degree weather, sensitivity to sounds and smells (speaking of which, don’t you need to take out the garbage, Blessed?), a tendency to use the hand that is practical rather than the one that is preferred (what’s that midline thing? Sounds kinda interesting…) um… where was I?… oh yeah, did you know that people with AS also display tics? (of course you did but I just wanted a way to slide in this next comment…) Perhaps many of the people here with TS and AS really have AS with TS (how can you tell the difference? hee hee hee…) Ok, ok, I know… now just where did I leave that closet? I have this attention problem, ya’ know… ——————-==== Posted via Deja News ====———————– http://www.dejanews.com/ Search, Read, Post to Usenet
Response:
Hi. My 6 yr. old son was diagnosed to have TS Tuesday pm and I have been reading this board since. Thanks to everyone. I would like to ask a couple of questions: 1. The Dr. (neurologist) didn’t do an exotic examination and yet made the diag. based on observing my son having a couple of tics. He raises his eyebrows and shakes his head from side to side (as if to shake his hair). These tics may occur 3 or 4 times an hour or once an hour or 10 times an hour depending on how tired he is. My question is can someone have tics but not have TS or is that the definition of TS? 2. Is it possible that his tics won’t get worse, the Dr. said that they definately WILL get worse and yet it seems to me that there exists varying degrees of TS? 3. If you have a 6 yr old with TS have you found it helpful to tell him he has a condition or has it been better to simply not make a big deal about it and simply respond to his inquiries when he is ready? Thanks in advance for the dialog.
Response:
Welcome to ast! Did you find the threads with information for new folks, including websites and recommended books? > 1. The Dr. (neurologist) didn’t do an exotic examination and yet made >the diag. based on observing my son having a couple of tics. He raises his >eyebrows and shakes his head from side to side (as if to shake his hair). >These tics may occur 3 or 4 times an hour or once an hour or 10 times an >hour depending on how tired he is. My question is can someone have tics but >not have TS or is that the definition of TS?
There are a couple of other things that can cause tics, but the neurologist probably ruled them out even though you weren’t aware that he had done that. You can find the definition of TS on the TSA webpage. If you didn’t find the recent posts here with those webpages, please email me and I’ll send. >2. Is it possible that his tics won’t get worse, the Dr. said that they >definately WILL get worse and yet it seems to me that there exists varying >degrees of TS?
It isn’t really possible for the Dr. to know if they will go away, get better, or get worse. Several different sets of statistics have been quoted, but regardless of the statistics, it’s not possible to know that for any individual case. The range of severity of cases of TS is very wide, from severe and debilitating to barely perceptible. >3. If you have a 6 yr old with TS have you found it helpful to tell him he >has a condition or has it been better to simply not make a big deal about it >and simply respond to his inquiries when he is ready? >Thanks in advance for the dialog.
The answer is highly dependent upon the child and the circumstances. My child doesn’t know about his TS, but his circumstances are very different from those of many others. Other children are not only fully aware, but participate in medication and treatment decisions. If you let us know more about your situation, we can all help you out !!! Again, Welcome to ast !!!
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Thanks, I’ll stay tuned.
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Hello Mark, > 1. The Dr. (neurologist) didn’t do an exotic examination and yet made > the diag. based on observing my son having a couple of tics. He raises his > eyebrows and shakes his head from side to side (as if to shake his hair). > These tics may occur 3 or 4 times an hour or once an hour or 10 times an > hour depending on how tired he is. My question is can someone have tics but > not have TS or is that the definition of TS?
TS is diagnosed based on a history of two or more motor tics plus one or more vocalizations that vary over time and don’t necessarily occur at the same time. The tics can’t be due to any other medical condition, and can’t be due to the effects of medication. > 2. Is it possible that his tics won’t get worse, the Dr. said that they > definately WILL get worse and yet it seems to me that there exists varying > degrees of TS?
You’re right. I have parents in my practice who had bad tics as children but have very few tics as adults. It seems to me that TS is more than one disease – IOW, there is considerable variation in the TS population. > 3. If you have a 6 yr old with TS have you found it helpful to tell him he > has a condition or has it been better to simply not make a big deal about it > and simply respond to his inquiries when he is ready?
Probably no good answer to this one. I guess it depends on how much of a problem it’s causing your son. Frankly, if it doesn’t disturb him, and doesn’t disturb his friends or teacher, I wouldn’t make a big deal of it. Best wishes, Jon Slater MD FRCPC
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Mark Lewis wrote in message <69orh0$…@sjx-ixn8.ix.netcom.com>… >Hi. My 6 yr. old son was diagnosed to have TS Tuesday pm and I have been >reading this board since. Thanks to everyone. >I would like to ask a couple of questions: > 1. The Dr. (neurologist) didn’t do an exotic examination and yet made >the diag. based on observing my son having a couple of tics. He raises his >eyebrows and shakes his head from side to side (as if to shake his hair). >These tics may occur 3 or 4 times an hour or once an hour or 10 times an >hour depending on how tired he is. My question is can someone have tics but >not have TS or is that the definition of TS?
Diagnosis is made by observation and history. Tics both motor and vocal, wax and wane in intensity over tims, change in nature over time, present between 2 and 15 (some literature says 18) years of age and present for at least a year. Tics that do not fall into this catagory are not usually considered Tourette’s. >2. Is it possible that his tics won’t get worse, the Dr. said that they >definately WILL get worse and yet it seems to me that there exists varying >degrees of TS?
Tics will probably get worse through the beginning of puberty. Then over time you will see either a leveling off or a decline in tics. We have met many adults who had Tourette’s as a child whose tics have completely disappeared. Often they were never diagnosed, like my husband. However the partner problems usually stay, like ADHD, OCD etc. >3. If you have a 6 yr old with TS have you found it helpful to tell him he >has a condition or has it been better to simply not make a big deal about it >and simply respond to his inquiries when he is ready?
I would keep a very open dialog going. Don’t give him more info than he asks for but don’t be shy about talking about it. – Hide quoted text — Show quoted text ->Thanks in advance for the dialog.
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My daughter was diagnosed with TS at age 6 by one of the top neurologists in Colorado. She has a mild case – up until now (she is 15), she has been on 1 mg of haliperodol. Please believe that the symptoms may not worsen! Her doctor stated that the symptoms may disappear or increase at puberty. They just now have increased somewhat – eye blinking. She has gone through the eye blinking, shoulder twitching, grunting. The medication helps almost 100%! Interestingly enough, I recently was contacted by a long lost cousin whose 6 year old boy was licking his lips, then touching his nose repeatedly. He was diagnosed with TS. However, she has put him through a program using "sensory integration" (no medication) and he has been symptomless for 2 mos. now. I urge you to find out about that. I am also doing that and woud like to know if anyone else has experience with this.
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> However, she has put him through a program using "sensory integration" (no >medication) and he has been symptomless for 2 mos. now. I urge you to find >out >about that. I am also doing that and woud like to know if anyone else has >experience with this.
Info about occupational therapy for sensory integration can be found at: http://home.earthlink.net/~sensoryint/ My son’s OT has been very helpful all round, but I would hesitate to say that it "caused" his decrease in tics, as tics naturally wax and wane over time. I still think it’s the best thing we’ve done for him outside of psychotherapy for his issues of non-TS-related trauma. His occupational therapist did point out to me that it was fortunate that I had sought out and paid for his initial evaluation, as all of his motor and sensory issues did not become apparent to them until several visits and they would not have picked him up in a routine school screening. His motor difficulties seem to wax and wane along with his tics !!! The place where he goes has six individual rooms with different equipment and all with one-way mirrors. I feel that the mirrors are an important part of this treatment, as I am more informed about TS than they are <g> and I can point out things to them that they miss.
