View Full Version : My nephew needs help with ts tics


jackers
05-19-08, 10:03 PM
My nephew is an adorable10 year old who has Tourettes and is suffering horribly from tics. They are severe and constant. He has missed so much school because of his tics that he has chosen to repeat fifth grade next year. His self-esteem is really low and he has found it difficult to make and keep good friends. Could anyone please give me some advice on treatment, both conventional and alternative? I don't know what meds he is on currently but whatever they are they are not working. His parents (my brother and his wife) have found a therapist that my nephew sees regularly and also take him to a special massage therapist. I know that they have tried acupuncture. I'm not sure how effective that was (don't know if they only tried it once or if he is going regularly but his tics are still really bad so I'm assuming it didn't work immediately). I read one of the other threads about tourettes and meds and one person said,

"I went to a seminar on Tourettes In January 2003. One of the things that they talked about is that if a person as Tourettes and other conditions as well, it is important to treat the disorder that is worse before actually treating the TS. For example, if you have OCD and ADHD, and your OCD causes you more problems than your ADHD or your Tourettes, it is best to treat the OCD"

I'm almost certain my nephew has add and a mood disorder but his parents have been reluctant to accept this so he is not treated for either.

Is there something that has worked for you or someone you know with severe tics? PLEASE write to me and share. I am interested in finding anything that works, conventional or alternative.
Thank you!

franny
05-20-08, 02:12 AM
I am so glad you posted this...I am also looking for info about treatments for severe tics. I am so sorry to hear about your nephew. It's hardest on the children, kids can be so cruel. Do his tics come out a lot at school or does he manage to supress them all day and then come home a basket case? My thoughts are with you and your nephew. I hope relief comes soon.

wifeof
05-20-08, 12:09 PM
I don't know if others have similar reactions, but aspartame (Nutrasweet) takes my husband's tics from mild to severe. Whenever they get worse we look back over anything new he has eaten and it always turns out to be something with aspartame in it. Read labels carefully -- it is hidden in lots of stuff where you wouldn't expect it (toothpaste, anyone?).

jackers
05-21-08, 01:39 AM
Thank you wifeof, I will look into that for sure. Can you tell me if your husband's tics got worse or better with age?

wifeof
05-21-08, 07:24 PM
Thank you wifeof, I will look into that for sure. Can you tell me if your husband's tics got worse or better with age?
What did improve with age was his comfort level with his tics, which helped to decrease them. When he was younger he put a lot of energy into trying to suppress them, which made them worse. The tics don't bother me, so he is more relaxed, and they only become more extreme if he get aspartame or if there is a drug reaction -- Strattera also set them off.

franny
05-21-08, 11:11 PM
Yes, there are a lot of triggers that can cause tics to surface or become more severe. For me it is allergies to certain things like dairy products and even certain smells can trigger my tics like bleach. Weird I know but has your nephew been checked out for allergies? What might be helpful is to keep a log of certain constants and variables that occur from day to day and in that way maybe start to pinpoint some of the triggers for your nephew's tics. I did that and it was very helpful.
Franny

jackers
05-23-08, 10:55 PM
Yes, there are a lot of triggers that can cause tics to surface or become more severe. For me it is allergies to certain things like dairy products and even certain smells can trigger my tics like bleach. Weird I know but has your nephew been checked out for allergies? What might be helpful is to keep a log of certain constants and variables that occur from day to day and in that way maybe start to pinpoint some of the triggers for your nephew's tics. I did that and it was very helpful.
Franny

Wow, excellent idea. Now if I can only convince my brother and sister-in-law to make a log...I have to be sneaky about it, make them think it was their idea, not mine. Hmmmm. Tricky. I asked my brother about the allergy testing and he said they did a long time ago but not the most effective method for screening. I forget which they said he did, the blood test or the prick test. He said they read the same thing about allergies and suspect there are some he's probably having to foods and environmental allergens that weren't detected the first time around. They plan to have him tested again soon.

Thank you so much for your post!
Jackers

franny
05-24-08, 12:56 AM
You are most welcome! Be patient with your brother, this must be excruciating for him. To watch your child have severe and self injurious tics and not be able to give him relief from it must be very painful for your brother. So it may be hard for him to accept outside help but perhaps he will realize your intentions are good and he'll let his guard down enough to hear you.

jackers
05-24-08, 02:12 PM
Thanks franny, that is exactly what I am hoping for.

jackers
05-26-08, 03:42 PM
Well, I talked to my brother with some success. He shared with me that my nephew is currently taking clonidine and tenex and I think something else but I can't remember. All I know is these are not working for him AT ALL! I took my nephew to the movies yesterday and his tics were so bad! He was convulsing violently and gasping for air every couple of minutes through the whole movie. It stressed me out so bad to see him suffering like that. But he is so brave, he didn't seem embarassed or anything. I asked him if he was ok at one point and he said he was. How he made it through the movie I have no idea, I would have wanted to leave if I was experiencing what he was. It was really bad and all I kept thinking is how can there not be a med out there, or a doctor for that matter, that can help him? I can't stand the idea that he will go through his life like this, it's so unfair!!

Celticgoddess
06-15-08, 10:20 PM
My son (age 9) has TS and his physical tics are the most dibilitating. He climbs. Anything and everything. We went through months where he would climb the OUTSIDE of the staircase and our stairs are in the centre of the house so they open to 3 storeys. If he fell, it would be a long way down. I think my blood pressure and panic went through the roof all those months!

After pursuing a lot of different options, we ended up choosing the medication Risperidone. He's on a very minimal amount (0.5mL in the AM and 0.25 in the PM) but it has made a huge difference for him.

It also helps with kids who have a short wick. Due to his Aspergers, he goes from 0 to explosion in a nanosecond. So it helped to slow down his brain so that he could make better problem solving decisions, and it's also a well known drug that deals with TS. So we ended up getting a bonus on both ends.

If you have any questions about it at all, please ask. I'm an open book when it comes to my little man's struggles. :)

Imnapl
06-16-08, 09:21 PM
He was convulsing violently and gasping for air every couple of minutes through the whole movie.Gasping for air is a tic? I would like to learn more about it.

speedo
06-16-08, 11:50 PM
Clonidine and tenex essentially do the same thing. I doubt he is on both of them. Those are good meds for ADHD and they have a good track record of reducing tics, so being on one of them is a good idea. It is likely the doctor started the lad on an SSRI like paxil. This is another med that works well in reducing tics. If that is the case it will be several weeks before the medication takes effect. If the doctor put him on one of the atypicals like risperdal it should take effect with the first dose. Risperdal is a relatively new drug but it works well for some people so it may be worth a try.
Hopefully the doctor can come up with something that helps.

Me :D

jackers
06-20-08, 01:29 AM
Gasping for air is a tic? I would like to learn more about it.

Not sure if that was a sincere question or not but just in case it was here is a link with lots of info. When you scroll all the way down it lists some common tics and yes, gasping is one of them.
http://www.tourettes-disorder.com/symptoms/tics.html

Imnapl
06-20-08, 09:33 AM
Gasping. Now I get it. Thanks for the link.

blueroo
06-24-08, 05:32 AM
I experience that "gasping" tic from time to time. For me, it isn't gasping so much as it is a reverse glottal stop. Close the glottis at the back of the throat, apply vacuum with the lungs, and open the glottis. You get a mix between a soft "gak" and a gasp. It is annoying as all get out.

jackers
06-24-08, 04:27 PM
I experience that "gasping" tic from time to time. For me, it isn't gasping so much as it is a reverse glottal stop. Close the glottis at the back of the throat, apply vacuum with the lungs, and open the glottis. You get a mix between a soft "gak" and a gasp. It is annoying as all get out.

Blue, I see you are from Seattle...do you have a good doc that has helped you with your tics? We live in Olympia but Seattle's not too far away.

blueroo
06-25-08, 05:00 AM
Blue, I see you are from Seattle...do you have a good doc that has helped you with your tics? We live in Olympia but Seattle's not too far away.

I don't have a doc for the TS anymore. I haven't since I was a teenager, and I didn't live in this area then. I wish I could help out more.

jackers
06-25-08, 10:00 AM
Oh well, thanks anyway blue. Glad to hear you don't need a doc for TS anymore. It gives me hope for my nephew that maybe his tics will get better with age.