Tourette's and ADHD

[Heather in Neverland]

Well, we got the official diagnosis this week for ds (12). We have known since he was very young that he had pretty severe sensory integration issues and he had a lot of occupational therapy when he was younger. We have always suspected the ADHD but as he was homeschooled we were able to work with it rather than medicate. However, in the last year he started exhibiting some new behaviors that threw us.

 

After about 9 months of watching these odd physical behaviors (which I now know are called "motor tics") we decided to have him evaluated and the doctor came back with ADHD (which we really already knew) and Tourette's Syndrome.

 

They have put him on Strattera and Risperdal.

 

I am trying not to be upset. It could be worse, right? But there is no cure for Tourette's so all you can do is try to medicate and control stressful situations which makes his tics worse. But my poor son will have to deal with these motor tics for the rest of his life and that just makes me sad.

 

Anyone else have children dealing with tourettes? Any advice?

[CAMom]

 

I am trying not to be upset. It could be worse, right? But there is no cure for Tourette's so all you can do is try to medicate and control stressful situations which makes his tics worse. But my poor son will have to deal with these motor tics for the rest of his life and that just makes me sad.

 

Anyone else have children dealing with tourettes? Any advice?

 

Heather, my Jordan (17.5 yo) has Tourette. He was diagnosed when he was 6.

 

We've never used medication. But, don't despair. The vast majority of Tourette kids will outgrow it in early adulthood. Jordan's tics are so much less prominent now that he's older.

 

Remember, 12 is a really hard age for TS kids. All the changes their bodies are going through make their tics go crazy. The tics will likely calm way down on the other side of puberty.

 

:grouphug:

[StephanieZ]

Don't freak out about the Tourette's. I know I DID. I totally freaked.

 

It is OK!

 

Many people w/Tourette's have it very mild. Many are never even diagnosed. It is not a problem unless the tics themselves cause the child a problem. If the tics are mild enough to be ignored, then no worries at all. . .

 

1) Tourette's can't be DXed until 12 mos have passed w/ the tics. . . So, if you are still shy of that, it may just be a temporary "tic disorder."

 

2) Even if it is Tourette's, it will wax, wane, and may disappear altogether at any time.

 

3) You don't medicate unless the tics are so severe as to cause real physical or mental distress, as the meds are serious business.

 

+ My dd's tics were pretty bad for 18-24 mos around age 10-11. . . But are 95% gone now (and have been for the past year or more) at age 13 after having petered out over a year or so (age 12ish). Occasionally she'll tic a bit, but very mildly and occasionall. I think this is actually fairly common. Honestly, I was so fearful of the DX, but it turned out to be almost nothing. You hear about Tourette's being so scary/bad but that is the extreme case -- many/most cases are so very mild. Noone noticed dd's tics, even when they were really bad, except my bff who is a pediatrician. :) Kids that age are just twitchy and weird, lol. ;)

 

So, don't freak out. With a little luck, your son will be just totally fine!

 

PM me if you want more details.

 

Hang in there!!!!!!!!!!!!!!!!

[Lisa in Jax]

Heather,

 

I read this woman's whole paper a while back, and it was amazing. If you're interested in looking into the possible causes of tourette's and adhd, it's worth a look.

 

HIH,

 

Lisa

 

http://www.tourette-syndrome.com/holistic.htm

[sheryl]

Don't freak out about the Tourette's. I know I DID. I totally freaked.

 

It is OK!

 

Many people w/Tourette's have it very mild. Many are never even diagnosed. It is not a problem unless the tics themselves cause the child a problem. If the tics are mild enough to be ignored, then no worries at all. . .

 

1) Tourette's can't be DXed until 12 mos have passed w/ the tics. . . So, if you are still shy of that, it may just be a temporary "tic disorder."

 

2) Even if it is Tourette's, it will wax, wane, and may disappear altogether at any time.

 

3) You don't medicate unless the tics are so severe as to cause real physical or mental distress, as the meds are serious business.

 

+ My dd's tics were pretty bad for 18-24 mos around age 10-11. . . But are 95% gone now (and have been for the past year or more) at age 13 after having petered out over a year or so (age 12ish). Occasionally she'll tic a bit, but very mildly and occasionall. I think this is actually fairly common. Honestly, I was so fearful of the DX, but it turned out to be almost nothing. You hear about Tourette's being so scary/bad but that is the extreme case -- many/most cases are so very mild. Noone noticed dd's tics, even when they were really bad, except my bff who is a pediatrician. :) Kids that age are just twitchy and weird, lol. ;)

 

So, don't freak out. With a little luck, your son will be just totally fine!

 

PM me if you want more details.

 

Hang in there!!!!!!!!!!!!!!!!

 

 

Is there a relationship b/t T.S. and adhd? My dd has controlled epilepsy, add and adhd, with a little o.d.d. thrown in. The points above are interesting, can you explain?

 

I know the extreme manifestation of tics, but what are the mild symptoms?

 

Thanks. Sheryl <><

[Granny_Weatherwax]

Is there a relationship b/t T.S. and adhd?Yes, they frequently occur together. Although not everyone with ADHD has Tourette Syndrome and not everyone with TS has ADHD. <

 

To the original Poster - try not to fret. My DS has TS and I freaked after the initial diagnosis. I, too, thought "My poor son..." but then I met people with TS and saw the rich, full lives they were living and it became easier to handle. There will be days when your momma's heart will weep for your DS and there will be times where you will forget TS exists. My worst day was when DS asked if he would pass TS along to his kids, if he had them. Such a heavy burden for a young man to carry.

 

DS's tics are practically non-existent at the moment. He can do anything and everything he wants to. He rock climbs, rappels, SCUBA dives, etc.

 

Since our boys are close in age if you should want to chat please feel free to pm me.

 

:grouphug:

[Evergreen State Sue]

Our ds was diagnosed with ADHD at about 8 yrs. old and with Tourette's about age 12. The neurologist who diagnosed the Tourette's told our ds that if his tics ever bother him, if he feels uncomfortable about them, that there is medication that can reduce them. The neurologist was very concerned about how our ds viewed his condition vs. other people. I think what a previous post said was right - I don't think you can have an official diagnosis of Tourette's for at least a year and I think they need to have presented as both motor and vocal tics. He also said sometimes they can go completely away in the teen years.

 

That being said, our ds has never taken medication for the tics. His tics seem to wax and wane and will manifest in different ways. He will not have tics for several months to the point I forget he has them and then they will come back in a mild form again.

 

We tried Straterra for his ADHD when he was first diagnosed, but didn't find it very effective. He now uses Concerta. There are lots of different medications and dosages. I think it takes a few weeks to see a difference with Straterra if it is going to work. Don't be afraid to try something else.

[Stacy in NJ]

I would just caution you that some neuro's won't prescribe ADHD meds for kiddos with TS. Some ADHD meds actually increase the intensity and duration of tics.

[Wendi]

Does your ds like sports? One of the stars of the U.S. soccer team, Tim Howard, has Tourette's.

 

Wendi

[tex-mex]

:grouphug::grouphug::grouphug:

[Amber in AUS]

:grouphug: don't stress yourself about all this. He is the same boy he was without the diagnosis. Hopefully the meds will prove effective.

[helena]

Both of my daughters (8 and 11), and my husband have TS. None of them have taken medications, though I thought my youngest might need them when she first started showing symptoms. Her tics were debilitating, painful and exhausting, but eventually they eased up into what she has now (manageable).

My husbands tics were severe as a child, in his teens they practically disappeared.

Right now I'm realizing two major things about my girls and TS. The first is that they HAVE to go to bed on time, if they don't get proper sleep on a strict schedule their tics come back with a vengeance (now that summer is here, it's been a challenge :)) . The second is that my kids are sensitive to food dyes and sweeteners. It's not just my imagination, they suffer for it.

 

I understand the sadness you have right now, it's such a helpless feeling for a mama.:grouphug: Don't let fear get the best of you because the truth of the matter is that most people with TS will see improvement the older they get, and also your son is seeing how you respond to this. Life knocks us around... but we're still here, right? I have Lupus and everyone else here has TS. It's crazy! We seem like a happy healthy family.. and we are. :) We just make adjustments , and keep on keeping on. Sometimes I start to worry about their futures, I wonder if they will improve over the years, if someone will fall madly in love with them just the way they are, will their children have it?? I know you are a spiritual woman, and so what's the point if you can't lean on that now? We can only do our best, and have faith in God.

 

FWIW, I've found a lot of warmth right here, this is a great place to come when you need a shoulder. There are some good threads here on the subject of TS, and a handful of folk who are on the same journey.

:grouphug:

[Denisemomof4]

Read up on neurofeedback. I believe I read that it could cure Tourettes. There is a man in NH whom had a daughter with severe, uncontrollable seizures. Medications weren't helping. She's now able to lead a normal life. Neurofeedback is truly amazing. It regulates the brain. It also helps with ADHD. I have seen noticeable results with my ADD son. Do your research.

[Heather in Neverland]

Honestly, I don't know how long the tics have been going on but I know they have been severe for about 9 months. They absolutely exhaust him. He tics all day long. Kids at school made fun of him last year. It was awful. I am so glad he will be homeschooled again.

 

The reason the doctor put him on Strattera is because it is the only ADHD med that does NOT make Tics worse. All the rest do. He has ds on a low dose of risperdal to help control the tics.

 

It is comforting to know the tics may ease up after puberty...they certainly do seem worse since it started! And his ADHD seems worse. poor kid. As if puberty isn't bad enough.

 

Thank you for all the good advice and warm words. It is so hard to see your child suffer through these things.

[helena]

Honestly, I don't know how long the tics have been going on but I know they have been severe for about 9 months. They absolutely exhaust him. He tics all day long. Kids at school made fun of him last year. It was awful. I am so glad he will be homeschooled again.

 

The reason the doctor put him on Strattera is because it is the only ADHD med that does NOT make Tics worse. All the rest do. He has ds on a low dose of risperdal to help control the tics.

 

It is comforting to know the tics may ease up after puberty...they certainly do seem worse since it started! And his ADHD seems worse. poor kid. As if puberty isn't bad enough.

 

Thank you for all the good advice and warm words. It is so hard to see your child suffer through these things.

 

I'm glad you still have the option to home school. My husband got teased in school too, even by teachers. I know it gives him a lot of peace to know that our daughters don't have to go through that (except for those sneak attacks when you're out in the world :glare:).

 

Your son might enjoy taking baths with epsom salts. They ease and relax sore muscles, and help with sleep issues (which a lot of TS people have).

[Pippen]

I have a nephew with TS and those middle school years in ps have been brutal so I'm glad you have the option to homeschool.

 

Anxiety is a major trigger with my nephew, so for him it's really important to be proactive in that area.

[whitestavern]

I don't have too much to add except that I also have a ds, 7, who has TS. His tics wax and wane. We have him on Calm (magnesium) which seems to help quite a bit if we are very consistent with it. He has anxiety and I suspect some ADD as well that go along with his TS. He also likes to bite/chew on things. When we start school up again in the fall, I want to try giving him natural gum he can chew on. I'm hoping it might help is concentration as well. Has anyone ever tried anything like that?

 

My mother saw a movie on HBO entitled I HAVE TOURETTE'S, BUT

TOURETTE'S DOESN'T HAVE ME, and thought it was wonderful and worth watching. We don't get HBO but I'll check on Netflix and maybe they will have it at some point. There is lots to read, although much of it worried me more than helped me, but some information was very helpful so I guess it's worth wading through it all.

[Granny_Weatherwax]

He also likes to bite/chew on things.

 

That is a tic and, from what I understand, very common. I hope the gum works for your DS.

[chiguirre]

I hope your ds feels better with the new meds. I just wanted to mention that Risperdal can cause sudden, large weight gains, just in case all the potential side effects weren't fully explained. My oldest has been on it for years and it's been great for him, but I have a couple of IRL friends whose children had a bad reaction to it and have had weight struggles ever since. This is just a heads up, most patients don't react to Risperdal in this way, but it does happen and it's a bear.

[hose]

Heather,

 

You may want to look into Bontech Supplements. My ds has been using them for 6 years and they're highly effective. Also, the stress of being teased at school probably made his tics worse and I am confident that homeschooling will help him next year. Blessings to you.

 

http://www.bonniegr.com/

[Jennifer in MI]

Oh Heather. I didn't know you guys were dealing with this. Please know I'm praying for your family. I'm so sad for him that he was teased in school. That's just so unfair. I'm sure that made the stress even worse. :grouphug::grouphug:

[Granny_Weatherwax]

Two good books about real life expereinces with TS are:

Against Medical Advice - Co-authored by James Patterson

Front of the Class - by Brad Cohen; also a movie by Hallmark Hall of Fame. Here's the Netflix link.

 

Front of the Class is empowering and DS enjoyed it.

Against Medical Advice is heart breaking. This boy's TS was severe but both DH and I cried while reading. Some of our journey was exposed in black and white but it made us realize just how many lives are touched by TS.

 

Here's a TS website developed for kids. It's a little juvenile but highly informative.

Here's a link to the Teacher's Guide for I have Tourette's but Tourette's Doesn't have Me.

Here's the link to the Netflix I Have TS but TS....

 

When your DS is ready to learn about other kids with TS, the Tourette SYndrome Association publishes a newsletter called That Darn Tic. It is written by kids with TS. Kids can write a bio, submit artwork, poetry, etc describing their experiences. When DS was first diagnosed reading about other kids, especially boys, with TS made him feel less isolated and a little more normal. Here's the link to That Darn Tic.

 

If you start to look up info. about TS you will become overloaded (BTDT). TS has a wide range of tics and behaviors and every child who has it is different. What one person experiences may not be what your son does. Please, please, please do not look at the worst cases and think it is where you will end up - nobody can tell what TS will do. We are homeschooling because of TS (I need to remind myself that is the impetus for hsing) and DS's tics have waned dramatically over the last 18 months.

 

I hope these links are informative for you and anyone else touched by TS.

[whitestavern]

Slight thread hijack?

 

My ds 7 doesn't technically "know" he has TS. We've talked to him about his tics and that some people have them. We tell him that many children his age have anxiety about going to bed (this is his worst one). He knows he takes the magnesium to help control the tics. What, in your opinion, are the pluses and minuses of having a bigger discussion on TS? On watching the movies and reading books about TS? I guess part of me doesn't want him to label himself, but maybe it will help?? For those who have BTDT, what are your recommendations about this? How did your children react if and when you had a conversation w/them about TS?

[Granny_Weatherwax]

How did your children react if and when you had a conversation w/them about TS?

 

Dragonrider was 10 when he was diagnosed and he already knew there was something going on. I think giving it a name helped us all understand what it was and what we were going to do about it.

[WistfulRidge]

I have a cousin that has T.S. He was 25 when I met him (my uncle married his mom) and his tics were not even noticeable despite the fact that the wedding was full of the type of situations that set them off. Most of the people he works with/interacts with (even on a daily basis) have no idea! He's mentioned that now (he just turned 32) they're even less noticeable and that they've faded a lot from when he was a teen.

[elfgivas]

hi heather -

 

i'm wondering if the onset of the tics and the time you moved overseas are close? stress is a big trigger, and moving as an early adolescent is, well, stressful.....

 

do you ever get back stateside, and if so, are the tics worse or better? (it could go either way, as travel is stressful, too).

 

good luck dealing with it all; you've had some great advice so far!

ann

[Heather in Neverland]

Two good books about real life expereinces with TS are:

Against Medical Advice - Co-authored by James Patterson

Front of the Class - by Brad Cohen; also a movie by Hallmark Hall of Fame. Here's the Netflix link.

 

Front of the Class is empowering and DS enjoyed it.

Against Medical Advice is heart breaking. This boy's TS was severe but both DH and I cried while reading. Some of our journey was exposed in black and white but it made us realize just how many lives are touched by TS.

 

Here's a TS website developed for kids. It's a little juvenile but highly informative.

Here's a link to the Teacher's Guide for I have Tourette's but Tourette's Doesn't have Me.

Here's the link to the Netflix I Have TS but TS....

 

When your DS is ready to learn about other kids with TS, the Tourette SYndrome Association publishes a newsletter called That Darn Tic. It is written by kids with TS. Kids can write a bio, submit artwork, poetry, etc describing their experiences. When DS was first diagnosed reading about other kids, especially boys, with TS made him feel less isolated and a little more normal. Here's the link to That Darn Tic.

 

If you start to look up info. about TS you will become overloaded (BTDT). TS has a wide range of tics and behaviors and every child who has it is different. What one person experiences may not be what your son does. Please, please, please do not look at the worst cases and think it is where you will end up - nobody can tell what TS will do. We are homeschooling because of TS (I need to remind myself that is the impetus for hsing) and DS's tics have waned dramatically over the last 18 months.

 

I hope these links are informative for you and anyone else touched by TS.

 

WOW, thank you for all this. Amazing!!!

[Caroline]

My son had Brad Cohen as a teacher, and he has been (or currently is, we've had a lot of changes in the past few months) a professional development specialist in the county where I teach. He is a very nice man and a great teacher. Very inspiring. (Although the movie's facts aren't completely perfect.)

[StephanieZ]

Is there a relationship b/t T.S. and adhd? My dd has controlled epilepsy, add and adhd, with a little o.d.d. thrown in. The points above are interesting, can you explain?

 

I know the extreme manifestation of tics, but what are the mild symptoms?

 

Thanks. Sheryl <><

 

I don't know about ADHD & TS relationships, as my dd is very much not ADHD, lol.

 

My understanding of TS is that it is defined as having BOTH gross motor (as in using muscle GROUPS, not just a single eye twitch (which is a fine motor tic) but things like a shoulder shrug, a grimace, etc) AND vocal tics (humming, uhuh-ing, throat clearing, etc.) for MORE THAN 12 MONTHS continuously.

 

Before 12 months of duration, these symptoms would just be called a "temporary tic disorder". If the child has other tics (fine motor or whatever) but NOT BOTH the GROSS & VOCAL, then it is some other tic disorder or some other thing, but not TS.

 

And, honestly, if the tics don't cause the child distress, then there is not neccessarily any advantage to diagnosing him, as there is not much to do about them w/o fairly extreme measures.

 

Stress reduction and magnesium, etc *may* be helpful. . . but stress reduction is sth everyone benefits from, lol.

 

HTH

[katemary63]

I've got Tourrette's. I have never taken meds. My tics do wax and wane. One time several years ago, they almost disapeared for a year. Last winter, they were worse then ever. It's weird. But you learn to live with it. Most people I know don't know I have it. I agree that getting enough sleep is the number one most important thing in the life of a Tourrette's person. I HAVE to have my sleep or my tics will go nuts. Don't be too sad, Mom. Everybody has issues. Everybody has hills to climb. TS is not the best thing to have but it's not the worst thing either. God bless him and your family. :grouphug:

[Laurie]

Both of my children have had the most trouble with tics at the beginning of puberty. I agree with the others who have recommended some sort of magnesium therapy...and in our house that also includes chocolate which is high in magnesium! :)

 

:grouphug:

[Evergreen State Sue]

 

The reason the doctor put him on Strattera is because it is the only ADHD med that does NOT make Tics worse. All the rest do. He has ds on a low dose of risperdal to help control the tics.

 

 

I talked to our neurologist about whether or not ADHD meds made tics worse. He told me that there has been a lot of research on this and they feel that because tics can wax and wane, it is more of a coincidence that the tics came back with a certain ADHD med. They have had other studies where the tics went away at the same time as starting the ADHD med. That has been our experience too. Did your doctor recommend Straterra because your son had experienced an increase in tics with other ADHD med? If the Straterra does not work, try something else.