How old are your kids...

Julie - posted on 11/03/2008 ( 9 moms have responded )

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My son is 15. He was diagnosed as ADHD at age 7, but got tagged with Tourettes at about 10. We disagreed with the diagnosis for YEARS because we'd been told (initially) that his tics were a side effect of the ADHD meds and never got a good reason why they wanted to diagnose Tourettes.



Last March we went to the Mayo Clinic to see a pediatric neurologist - boy did our opinions change! He took a lot of time to explain everything to us along with what we can expect - and it isn't good for the next few years at least. Unfortunately, we also have behavioral issues to go along with it.



Is anyone in the same boat as us yet (or better, survived it)?

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Kristine - posted on 12/22/2008

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Thank you so much for the information. I live in Virginia. I will keep everything in mind that all of you have written when we go to our child study meeting on Jan 12th. I did contact the Tourettes Syndrome Association of Greater Washington D.C. which includes Virginia. I might be able to have someone there at our meeting for support. I completely agree that taking recess away from a child like this is not beneficial. My son seems to be moving around more (probably trying to supress his tics) now than ever because he switched two weeks ago to a verbal tic. Today was a really good day. I put him in a camp for the day at a place that is like a safe haven for my children! They have been attending the community center for days off vacations and camps and they are always having fun and very relaxed. When I told the director that my son had tourettes (and he has know Alexander for a few years now) he said that there were others with Tourettes there, too, but my children are always well behaved and have never had any problems. There was something very comforting hearing that. I guess with the craziness of school, I have felt that maybe my children were not behaving, however, I have never heard otherwise outside of school so there is a sense of relief today. I am hoping that fun for 2 weeks, playing with cousins over the holiday will be good for all of us. My fingers are crossed that 2009 will bring happier, calmer days!

Loretta - posted on 12/22/2008

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I totally agree with Julie. My husband and I went to the school for help and they said they didn't see a problem with our son. I had the neurologist write a letter confirming my son's diagnosis, then I went online to the Washington State education website and printed out the guildlines our state has set asided for teachers and presented this at a meeting with the school. When I set up the meeting I requested that anyone who would be responsible for any kind of "reprimanding" of my son be present. The meeting went well, we do not have an IEP at this time, but the school has appreciated the information we provided and have made concessions for my son. Kyle has a "wiggle seat" in the classroom which really helps him, and he has stress balls, and worry stones that he keeps in his desk so if he needs to fidget he can use those. Kyle said the wiggle seat is the most helpful. I also requested that my son not be reprimanded by staying in from recess, instead have him walk a lap around the track of something physical. It is torture to put a kid with tourette's in a time out if he is ticing a lot. I see no reason that a child with tourette's should not be in a mainstream classroom, my excells in school and I couldn't imagine keeping from his classmates. I was worried about the verbal tics inferring with the class, but the neuro-phsychologist who has worked with our son has helped him communicate to his classmates as well. For now we are ok, but I do worry about what the future holds. Oh, you should also be able to get an advocate from the state to go to meetings with school for an IEP if they are not receptive to help you.

Julie - posted on 12/18/2008

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You can research IEP standards in your state - I've never had to because with the initial diagnosis of ADHD, my son was automatically given an IEP meeting.



Let me know what state you're in and I can do some quick searches to give you a starting point.

Kristine - posted on 12/18/2008

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How does anyone get help from the school. I am told that because my son tests grade level or higher, he does not qualify for help. He had dropped from being a straight A student to one who was coming home with random papers and overall B work. However the teacher was cruel and causing some anxiety with him and caused him to go into depression until he decided he did not want to go to school anymore so we switched his teacher. Nice man, laid back, unorganized, and now my son is failing everything. The first week of the switch my son got all A's and B's (even on material he was not there for) and now all of his papers came home yesterday and the teacher never notified me that Alexander was failing his subjects. Even when I requested it. When I went to the principal, his comment was that he is completely capable of doing his work since he tested that he can do it! At no point, did he realize how tourettes can be effecting my childs test taking skills. Something is just not right.

Kristine - posted on 12/11/2008

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Thanks, so much, Julie. My son has a really nice teacher currently. (we had to switch him after the first 9 weeks of school because his first teacher this year was from hell and just could not handle his wiggling and caused him to be ostracized by the other students by not preventing him from being bullied. The neurologist mentioned to me that we may not have seen some of these TS symptoms if the situation in the classroom has not been such a bad environment and the teacher/student a bad match.



My hope is that he keeps coming home happy right now and maybe over the holiday vacation (2 weeks here in VA!) he will relax, have fun, and maybe the noises will disappear. I did notice that his head movements have been to a minimum since he has developed the "squeak" tic. I am assuming that is a substitute. If I could just get him to wiggle a ball in his pocket! :)



I will keep everyone posted. Thanks, again, for the support!

Julie - posted on 12/10/2008

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Don't let the school intimidate you into agreeing to remove your child from mainstream classes. It's possible it's different in other states (due to special ed laws - we're in MN), but my son has a pretty severe case of TS and he is mainstreamed in all classes as a freshman in high school.



The TS is enough of an issue - but to isolate the kids away from non-TS kids, IMO, makes it worse. The non-TS kids think there's something wrong (in a bad way) with the TS kid and the TS kid understandably feels isolated and ostracized. You've got to be your child's advocate because I've found that far too many teachers (not all!) don't want to deal with issues like this. It is more work for the teacher, and that's unfortunate, but they chose to teach and TS is NOT a purposeful display on the kid's part nor is it indicative of the child's intelligence level and ability to learn. I'm preaching to the choir to an extent, I know, but this is a pet peeve of mine after running into and dealing with some of these teachers.

Kristine - posted on 12/10/2008

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My son who will be 9 in January was diagnosed with TS in November. It has broken my heart to see his situation worsen when I keep hoping it will get better. He tried Tenex and we took him off after 4 days because his tics became more prounounced, but a water pipe broke in our house and life has been a bit stressful and chaotic at home. SInce my son also has PANDAS he is finishing his first round of antibiotics to keep the strep down and in January we will try clonadine. This weekend, my son started "squeaking". I realized last night that is a vocalization common to TS. Sometimes I feel so overwelmed, worried and want to cry. Yes, I am speaking to a therapist to find strategies to help us at home and me deal. My big concerns are that they may take him out of his classroom and he is very smart. I try to read as much as I can about the disorder and have tried to explain it to him so he knows what is going on and we understand that he is not doing it on purpose.

Ashley - posted on 11/10/2008

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My son is 10 (11 in Jan). He started with motor tics when he was 5 - right after he got over strep throat. His vocal tics started when he was in 2nd grade...so he was 7. The neurologist first said he didn't have vocal tics. He said it was a stutter. I can't tell you hoe mad that made me. This doc was supposed to be the best pediatric neuro in the upstate - the only one in my area. I called my pediatrician to ask for a referral to another doctor. They put us in touch with a behavioral psychologist. While Jake doesn't have behavior issues, this doc did say it was definitely TS after a one on one conversation with Jake that lasted about 10 minutes. At this time, Jake was ticking really bad and very often. He put him on Tenex...a BP med. The meds seemed to reduce the tics. He was able to come off of it this summer about 3 wks before school started but after being back in school about a month he had to go back on the meds. As his doctor told me, and I also realized, the tics wax and wane. Jake gets very frustrated a times and has even been bullied because of his "funny noises". But the older he gets the more he's learned that he can "transfer" his tics. He has described ticking as being like an itch that has to be scratched. If he has a tic that isn't appropriate for school, he can change it. One was a whistle that he changed in to tapping his foot. It's been a learning experience for both of us.

Dana - posted on 11/03/2008

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My son is going to be 8 next month. When he was 6 we started to notice his tics. They started out so mild that I was the only one who noticed. I started a journal and wrote down every tic and how long it lasted and when new ones started. I knew what Tourettes was and did some more research online. I didn't take him to a neurologist until it started to bother him. I like the doctor and he seems to share the same opinion as I do. As long as it doesn't affect his school work or social life we won't medicate him. All the medicines used are primarily for other problems (ie: ADHD, high blood pressure...) with the side-effect that it "may" reduce the tics. Matthew doesn't have ADHD but recently his behavior is changing. He's becoming more short-tempered, and mouthy...probably just a typical 8 year old! But I can't help but wonder if it's not because of his issues...he also has a speech disorder that he's been in therapy for since he was 2. His tics come and go in how bad they are. Right now they are not too bad although they never do go away completely. I know from talking with the doctor that the worst is yet to come. That is the scariest part for me and when it does get worse I want to have some options for treatment. That's why I've been looking into a vitamin therapy that I read about. I'd rather try that than some medication that could probably damage his liver over time.

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