Asperger's and Tourette's

Carrie - posted on 07/09/2010 ( 20 moms have responded )

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Hi, I am new here.... my 6 year old son was recently diagnosed this week with Tourette's syndrome along with ADHD. I am interested in starting a discussion with other mom's who have children with dual diagnosis of Asperger's and Tourette's. My son is undergoing further evaluations at this time but I really think that there is more than Tourette's going on with him because of a speech problem and also repetitive behaviors and social issues. I am also a behavioral therapist with the Center for Austism and Related Disorders and have been for 10 years now, so I am very familiar with behaviors and signs in children. I just don't know very much about Tourette's and how it may be connected to Asperger's. I have also never been on this side of a diagnosis, and am probably going to have to pay for a private evaluation. My son was also given a prescription for Tennex. Any thoughts?

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Irene - posted on 06/13/2011

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Me too, I joined just for you... Your situation sounds just like ours was. He started when he was four but got diagnosed at six. Oh boy. Welcome to hell. Sorry, I shouldn't say that! Some days are no fun, I assure you. And you have only begun. The best advice I can offer you (since you asked) is 1. Keep a journal 2. Ignore most of your family and friends because they know NOTHING at all about what they think they know so well (but they mean well, blah blah blah) 3. Fight fight fight for your kid at school because you will soon find out the teachers and staff are CLUELESS as much as they want to be helpful and try to understand. 4. Keep notes before and after EVERY doctor visit, keep records together in a binder so you always have them with you and can be cross referenced including school info. 5. Keep dyes OUT OF YOUR CHILD period. ALL food dyes, not only red will worsen behaviors and tics. These effects will lesson after about a month of reducing it down to no food dyes. Watch out for shampoos, etc too. You will be amazed at how much goes into our bodies when you start looking... Especially watch out for the drinks. And NO artificial sweetners, they too affect the brain. And for God's sake, if you smoke, DO IT OUTSIDE and stay away from your kids. Even the second hand lingering smoke from your clothes can and will affect them especially inside the car. There are over 180 chemicals that affect the brain, their brain as well as their nuerological system are already on overload. 6. Be smart about how much to expect of them, they aren't like every other kid. You WILL have to make choices and sacrifices unfotunately. 7. If you have other kids, expect war at least once a week. Accept it and move on, educate yourself in every way possible, as often as possible. Impossible, I know. My house is a wreck! But I spend whatever spare time I can learning as it's all updated and with the other family members so they aren't left out and try to take care of you too. 8. Join the nearest support group you can find for both the Asperger's and the TS. You will get different info from each. Get phone numbers, these parents get it and won't judge you on those days when you abruptly sense the kids have had enough and it is time to leave NOW. Same goes for anyone else with a child with any type of special needs, they too "get it" so they will become the ones in your life who really do understand... And their kids will be encouraged to stay friends, not avoid you and your children since they too deal with what you will! You are about to get on a scary roller coaster ride and even though there are seatbelts there will be days when you feel like you are going to fall off! Just hang on and enjoy the ride! You were hand picked by a higher power to be the special care giver to this amazing creature. You are blessed!

Carrie - posted on 06/13/2011

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Hi Irene! Thanks for your comments.... we have been really busy. I currently homeschool 3 of my four children but I am seriously considering putting my kids in public school next year because it is soooo difficult. My son who is almost 7 with Tourettes has such a difficult time. I had actually stopped giving him the Tennex around December because it didn't seem to help his tics at all. There are definitly days when I feel like I need to put him back on it though. Lately he has been having a lot of rage attacks. What you said about war in the house is sooo true. And because my kids are with eachother 24/7 we have about a few wars daily vs weekly. Just today my son has choked his sister, bit his sister, and kicked his brother out of frustration. It really worries me and I just don't even know what to do about it. I want to get him counseling or something or maybe put him back on the medication to help him manage his rage. It is usually very short lived. He actually told me that he thinks he has a tic that makes him feel like he needs to hurt people. As far as diet goes we are usually pretty good eaters. I buy mostly all organic food, no sugar, dyes etc. I think his tics have decreased a bit, but then he is doing these full body tics where he is jumping and twirling, spinning cartwheels and kicking things and people. Also just today I took my 4 year old to the Pediatrician today and he is being referred to a Neurologist for Tourettes as well. So that will be two in the house with Tourettes most likely. I will have to ask about the Risperdal. Does that help with the behavioral, emotional side of things? Its like the tics I can usually handle, but the emotional outbursts, rage and aggressiveness is worrying me. Also I am worried about how he will do in a classroom because God knows I have a hard time dealing with him and he is my own kid! :) Mostly he is awesome and a super sweetie... but getting him to sit still and focus is extemely challenging. I am sure you know. We hooked up with an awesome TS group out here this year... it is a real blessing! Thanks again for all the posts! Great information, beneficial to all. I will take your advice about the record keeping too.

Nicky - posted on 09/13/2010

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Hi, I have a 12 year old boy who was diagnosed with ADHD, Tourette's and Asperger's at the age of 5. He has been on medication since the age of 6, but his symtoms have got increasingly worse as he has got older. We have tried all sorts of medications for his ADHD and his tics but we have had to be very careful because some medication for his ADHD makes his tics worse. So we have tried different combinations. Now my son is on high doses of medication and still has tics and still finds it difficult to behave at school. Although he goes to a special school with only 3 in his class the teachers still sometimes ring me and say they cannot teach the class with my son in it. He has vocal tics every second of being awake. Every day of his life. Except occasionally he has days when he can tic every minute instead of every second. Its hard for him and us! The Doctors say his anxiety levels are high because of school and having to do things he doesnt want to. But thats life! Has anyone got any suggestions pls?

Jamie - posted on 08/15/2010

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TS and autism are currently being researched together by a number of facilities. There is a lot more money out there for autism research because its more widely recognized. As far as the difference between autism and TS most people feel that the tics are the deciding factor. TS usually has a triad of symptoms: tics, ADHD and OCD. Every child is different though some have no OCD or ADHD symptoms while some are consumed by them. The tics can be vocal or motor and can change frequently. Speech problems can be caused by vocal tics: studdering, expressive problems and repeatitive sounds. My son has to make his "k" sounds very sharp and a little louder as well as he appears to talk more out of the right side of his mouth. It really takes and skilled doctor who knows TS and a detailed journal of symptoms from you to help treat your child. Good Luck.

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Sarah - posted on 09/30/2013

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My son has Aspergers and ADHD, i also now think he may have Tourette's as his tic's are getting much worse before his medication (concerta XL) begins to work. I am not a specialist, but i was the first to diagnose my son after much research. As a very small child (1yr old) he showed classic Autistic behavior, but the ADHD didn't come out for a couple more years (3-4) he did have some tic's, repeating words etc, but mostly it was things like smearing and damaging things, including himself, breaking his own teeth, pulling his own toenails out and constantly picking at scabs. I finally got him officially diagnosed at the age of 6 and on to medication to help him function and sleep. he is currently taking 36mg of concerta which is quite high for a 9 yr old, and whilst it works well once digested, he has been getting more tics first thing in the morning mostly verbal but also jumping around, repeating words, some rude words and strange noises and screaming. It seams to me that it is a development from his Aspie/ADHD tic's but is much more like Tourette's now. From what i know about Tourette's it is purely verbal and physical tics, but like you i need to research it more to define whether it is just his symptoms worsening or he has developed Tourette's. Good luck

Lynette - posted on 02/24/2013

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Thanks for the reply. I starting to realize that there are common comorbid disorders with aspergers. His psychiatrist still feels he has aspergers. I guess some kids with Aspergers are more socially awkward than others.

Nicole - posted on 02/23/2013

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Hi I see post is from 2010 but hopefully you still see it! My son is 8 years old he has Tourettes, Tic disorder diagnosed March 2011! Aspergers amd ADHD was diagnosed 2 months ago! I have Tics and I'm 36 I also have anxiety! He was on clonidine blood pressure meds for tics for 2 years but his side effects got real bad bloody nose and severe headaches! He is now on Tennex and its working great! He is high functioning aspergers and has been reading and spelling since he was two! But once in first grade his behavior started getting bad in school and at home! Neuro dr doesnt know if the behavior comes from his tourettes or aspergers! School has him with a one on one soneone who gets him threw his day etc! I eon't let them give him any other meds for ADHD as fear they all mostly cause more tics! I have a lot to say on here bur not sure if you will see it!

Lynette - posted on 02/04/2013

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My son was diagnosed with aspergers last year but I'm starting to have my doubts about this diagnosis. It seems he is more tourettes, adhd and has sensory issues. Some of the red flags for aspergers, I believe, were my son touching people just tapping and touching them for no reason, minimal twirling with funny sounds and motion craving on the go etc. He does have a neck tic now and very minimal ocassional twirls. I don't see the rigidity as much and he does ok socially maybe just inappropriate at times but not really awkward...this leads me to believe that the inappropriate tapping touching may have been tourettes all along and not aspergers. Anybody experience antything similar.

User - posted on 11/14/2012

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My son who is 11 has partial tourrettes and signs of asbergers too its an every day struggle for the parent and the child but love keeps us going

Samanthachase - posted on 10/03/2012

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The above post states it all sry don't mean to pick on you or your situation but at age of 10 on Tennex b/c it reduces her ticks what do you give her at age 15 or 20 or 25. She will be on kolonipin by then and addicted to opiates. Why not let her be her and learn to surpress the ticks at a young age like some kids. Surpress a lisp it is possible. Plz look for a good behavioral psycotherapist. Ask your prescribing pbhysician where they see your child in 5 years. On what meds. Ooh by the way prescribing physicians or psychiatists get 20 % kick back on the meds they prescribe in most states. Plz teach her to control it herself she can just like someone that stutters or has a lisp she. Can you just need the right professional to teach you as her mom and your daughter how. Plz

Samanthachase - posted on 10/03/2012

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Plz be so careful with the use of medication. Your child is special. Medication may only be a bandaide. I have worked in the field for 15 plus years. Pllease read all the side. Effects, its to easy to tranquilize and medicate. Do research your child deserves an education.. IEP and all the outside help (care takers coming into your home) as does any special needs child.. please think twice before medicating it is a long dark road.. albert einstein was thought to have aspergers imagine if his mom medicated him. I am being the voice and advocate for your child here. Seek good educated 2nd and 3rd opinions before a bandaide plz.

Amy - posted on 01/26/2012

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I have a soon to be 5-year-old with Asperger's and my 10-year-old daughter was recently diagnosed with Tourette's. My daughter is on Tennex now and you can really see the difference in the amount of times her tics flare up. I haven't had any problems with Tennex, but I think at her next appointment we might need to increase her dosage a little.

Tania - posted on 10/25/2011

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hi ...wow im really not alone . my youngest has tourettes and aspergers my elderst has aspergers . my youngest well the rage and anger screaming yelling hitting puching his brother its out of control its a mad house . i am actually glad i can read what everyone is going through it really helps ....family and friends just dont get , they just dont understand so theres no point talking to them at all .

Irene - posted on 06/15/2011

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Oh Carrie, you are my idol! Or, you are just plain nuts! I am not sure which. Home schooling is tough I must admit. I am considering it myself right now, but know I am likely to wish I hadn't come up with that bright idea shortly after! LOL!
There is so much to be gained from others "hard way" lessons for sure. I found just hearing the similarities in other kids tics helped us. And in our situation, the school really has been great and accommodated every request just about, and he has a 504 Plan and an IEP, but so far but they still don't get it. It is a tough tough diagnosis. One area overlaps the other and every day I know if I struggle with knowing I may be disciplining what he can't control accidentally and maybe be letting him get away with what he absolutely CAN control then the school has the same problem but he's lost in the shuffle of so many and they need to keep order. I get that. Just as you do in your household to get the work done. It is hard. It is just so disheartening when you hear the aide (his personal aide!) said he was being obnoxious and the guidance counselor tells him he's making bad choices! I mean hello?! Those of you who aren't aware, there are wonderful places like TheraPlay and others that REALLY help with the spinning (vestibular needs or input) and fine motor skills, and sensory input and discharge, social cues etc. Insurance often pays for it. And many states will provide "wrap around services" that isn't income based once you have a diagnosis that help and offer up new services too sometimes. Check these things out! Respite care I think is what is REALLY REALLY needed by parents. Where do you live? I would bet there are parents out there willing to swap nights out just so you have a chance to unwind. Thats' how I feel, wound up like a top after a long day with the kids. I can only imagine what my son feels like! Thank goodness for melatonin. I wish I started him on it last year. It is a miracle! I can actually get a few things done before I too pass out! You all are heaven sent. Our little ones are lucky to have such dedicated Mommie's!

Irene - posted on 06/13/2011

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Oh. I forgot about the Tennex. I can tell you personally about this drug. I will tell you our story in short. My son just this past month stopped having the reaction to it that landed him in the ER after just two weeks on it. He neurologically reacted with feeling of his arms and legs and head being on fire, murderous rage, way worse impusle control and deep deep sadness and depression. He's eight. It was a mess. This is a drug they treat folks with blood pressure for and have been using it with some success on some people for Tourette's but I think it's too soon especially for kids to be given this drug without really knowing enough about it. Personally I would look up all the info you can on it and be aware of the possible side effects ON PEOPLE BEING TREATED FOR TS with it! Not what the manufacturer posts because that is side effects on those taking it for blood pressure. Little side note, my doc or my child's I should say is the leading child neurologist at one of the very best childrens hospital on the east coast who shall remain nameless as would be in a group session. He had not expected this of the medicine. Just so you know. It may work fabulous for you, for us it took a month to be over and out of his system. I thought he would need to be institutionalized until that time, that's how bad it got! We are about to try Risperdal. Good luck!

User - posted on 11/06/2010

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Wow it was wired reading this because for 7 yrs, I thought my son was asperger, the way my doc explained it to me is that the effects of the tow tend to over lap each other, that's why we thought they were. and the social, and repetitive things are do to the break down of Tourette's. OCD, ADHD< ADD, RAGE, TICS, LEARNING PROBLEMS, INSOMNIA,...my son has problems making friends because things have to be done a certain way , and he has to always be in control. but that goes back to his OCD. hope this helps

Nicky - posted on 10/12/2010

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In my experience ADHD meds have made my son's tics worse. So I have had to reduce his meds to help his tics but his ADHD symptoms can get out of control and he finds it hard to concentrate and sit still at school. Luckily my son is in a special school so they can deal with his behaviour better. My son could not cope in a mainstream secondary school.

In answer to the person who said there son looks like he is having seizures. Ive often thought that with my son when he has all over body tics. At the moment he had motor and vocal tics and it doesn't really matter what meds we try, his tics are still severe. He is on concerta and strattera and serequel for tics three times a day. We have tried clonidine, which did nothing. We have tried Respiridone which made him much worse. I hadn't heard of Tennex before I came on here. Has anyone tried the meds i'm using for my son and also tried Tennex?

Jamie - posted on 10/10/2010

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Adhd meds do make tics worse. In your sons case I would see definately see a neurologist. That will help you rule out other issues, but they do not routinely treat TS. It is usually managed by behavioral health, not because it a psych disorder but because they have the most experience with the meds. Most of those meds should not be stopped abruptly but you may have to weigh the benefits versus the tics. My sons said the tics were way more embarassing and tramatizing to him. We were able to work on his attention deficit with some teaching techniques. Strattera was the meds that worked for him and did not increase the tics. Good Luck!

Billie - posted on 10/09/2010

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My son is 12 years old and he has been on meds for adhd & a sleep disorder since he was 5. A few years back I noticed he started having tics on the metedate so we changed to concerta. He didnt have tics for the first year when on this then he started getting vocal tics & visual tics. He seemed to continue to get more & they were worse, the doctors kept telling me that certain meds sometimes bring tics out in kids. So this summer I didnt have him on the meds for the adhd & we decreased his serequel. Some of the tics went away others decreased but he couldnt concentrate. So when school started back we put him on starterra, didnt work he cried all the time so the doctor tried concerta again. School has only been in for 2 months & I get calls all the time, just this week I had a teacher call me & say my sons tics are getting so bad she thought he was having a seizure in the class. He is now jerking his upper body around, lots of verbal tics & physical movement. His doctor said on friday we need to see a neurologist to check him for tourettes.. Everything I have looked up about tourettes describes my son, but I dont understand why the dr. didnt catch this sooner, does adhd meds make tourettes worse, does it make it come out in a child who never had issues with it until they take meds & can taking him off the meds help stop any of the tics for good??? Please someone give me some advice, Im kind of lost..

Kimberly - posted on 07/17/2010

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Hi Carrie,

My daughter was diagnosed at 4yr but because of her age they wouldn't say Asperger's just yet. She is now 6yrs old and we are having worse symptoms as of late that it breaks my heart that I can't take it away for her. Tourette's is on the spectrum of Autism like Asperger's so that is why they are sometimes linked. I am a RN and am happy to try to support as best I can. This is a slow board however....everyone just dealing with their children as someone put it awhile ago. Everyone is very supportive however. We are trying Omega 3 vits organic and others have tried dietary means to help with tics. My daughter says the vits help but right now we are in a waxing rather than waning cycle so it is difficult. We are waiting on meds until it effects school or until she is bothered by her tics due to her OCD that might be made worse by meds for Tourette's. Good luck and ask away. Kim

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