MDJunction - People Helping People
 
Ask a Question
03/02/2012 04:06 AM

Hello, my son has Tourettes

SceneMissing
Posts: 2
New Member

I honestly don't know what to say. I've looked online before for tourettes support groups, haven't found anything that "clicked". I'm considering trying to start a support group in my area, but my son's neurologist only has 3-4 other patients. If I get half of them, that's maybe 2. And their ages aren't close.

I'm struggling big-time. I don't know how to help him. He has a lot of different things to go along with his tics (tourettes plus), and in a lot of ways he's miserable. And I feel like I can't help him.

I don't know. I guess I'm just maybe looking for other people (parents maybe?) who are dealing with what I'm dealing with.

Reply

03/02/2012 06:46 AM
Nevayda
 
Posts: 7675
Group Leader

Hi Scenemissing and welcome. As you see, people with tourette syndrome are really in the minority. Have you gone to usa.tsa.org? They do have a phone number posted that you can call to request information. They can tell you if there is a support group in your state (even if you can't go you could call and talk with the leader), they have a wonderful newsletter for a small yearly fee, and there is a lot of information on their site. They work hard to help families and educate physicians, patients, families and the public. They also have a facebook page with over 700 members worldwide.

After the neurologist diagnosed my child and prescribed meds, that were not that effective, we went regularly to a pediatric psychiatrist who was able to help. Sometimes I think psychiatrists know more about the medicines.

You didn't mention your son's age. The National Tourette Syndrome Assosciation can talk with you about school needs if needed. I had great support from my state tourette syndrome association for information, help with the school, and emotional support. They also have a list of physicians who treat children with TS.

I recognize your grief, despair and isolation. You need a support network. Are you going to counceling with your son? All counties have to have a mental health agency staffed with counselors. It does help to have that support and to brain storm some ideas.

I remember keeping a low key kind of home, as little excitement as possible, using a reward chart, having my child write an apology for infractions of the rules and for disrespect to me, as well as doing an attonement-usually a chore. If that is refused by the child, then time out in their room without tv, music, or games.

I kept basic house rules because she was dealing with so much. I carried my keys in my pocket because whe would continually lock all the doors all the time. What ever works. There was a time that I didn't know how it would be when she was an adult. It was depressing so I went on an anit depressant, it helped. We were active at all the area Church activities for children where there was more acceptance from peers.

I'm happy to say that my daughter is having a normal kind of life, is independant, going to college, and a real sweetheart. She finally found meds that keep tics and ocd under control.

I hope this is a help. Parents do get worn down especially emotionally, and you need someone to confide in, as well as planning some kind of time for yourself away from your child. A Mother's love is supernatural, in my opinion, and we never give up, regardless of the hurdles. It does get better in most situations around the late teen years, and it's a matter of getting him thru, with his self esteem intact as much as possible, as with good self esteem, he can follow his own built in blueprint and reach his potential. Try to dispell any negative thoughts, with more positive thoughts as positives will have a better effect on both of you. Hugs to you both.


03/03/2012 05:57 AM
SSLMD
Posts: 1023
Group Leader

Welcome aboard. There are, or at least were, a number of sites offering support. They vary in the type of participants they acquire, but using more than one sometimes helps. One of the best used to be a USENET site, alt.support.tourettes, but it was taken over by a single person who seemed mentally disturbed and ruined. It's pretty much dead now.

03/09/2012 10:01 AM
smaude
Posts: 2
New Member

I understanding what you are going through my son also has TS he hasn't been officaly diaginosed yet but there is a family history his father has it and I noticed at 3 his eyes started to blink just like his fathers. My husband was so upset because he blames himself for passing on his genes but it is just like the color of your hair you can't help it. As time went on the blinking intensfied and than he started sniffing it has gotten very loud and he pulls his eye lashes he says because he blinks. I didn't think about getting him diaginosed because I didn't think they could do anything for it. My husband was never diaginosed either he always had tics and other people would tell him he had TS but he would tell them they didn't know what they were talking about. Than one night we were wathing TV and they had the goalie on for Manchetser United talking about TS and he had the same exact tics as my husband almost at the same timing and he looked at me and said I have TS. My son also has OCD pretty bad it has to do alot with his clothes he hates lines and bumps and anything that feels uncomfortable toughing his skin. Which cause for major delays in the morning time geting out for school. I to feel lost I try to look up doctors that I can take him to in my area and find nothing. I don't know what to do... If anyone can help please let me know where I can turn.

03/09/2012 11:46 AM
Nevayda
 
Posts: 7675
Group Leader

Tourette Syndrome Association

42-40 Bell Boulevard

Suite 205

Bayside, NY 11361-2820

ts@tsa-usa.org

http://tsa-usa.org

Tel: 718-224-2999 888-4-TOURET (486-8738)

Hi smaude. Call this phone number and ask for a doctor in your area who treats tourette syndrome. Also ask if your state has a tourette assocition and the phone number, then call and ask where there may be a support group in your area.

The above number is the National Tourette Syndrome Association and they will be glad to assist you. They also have videos, packets of information and are a resource for parents and people who have tourette. Your child may need assist in school, and they can also send you info regarding that.

Hope this is a help. Your husband is not to blame for anything and maybe with more information, he will come to terms with that realization. Tourette syndrome is not life threatening, but it can make things difficult in childhood. A diagnosis is needed to get any helps from the school, if needed, so it's a good start. Hugs to you and your family.

The OCD is fairly normal with Tourettes. If medication is indicated, it does seem to help with that and with the tics.

Post edited by: Nevayda, at: 03/09/2012 11:48 AM


03/09/2012 12:46 PM
smaude
Posts: 2
New Member

Nevayda.. Thank you. I finaly feel like i have somewhere to go to get answers.

05/17/2012 03:31 AM
Song4themoon
Posts: 17
Member

Hi. I completely know what you mean, I think we all do.

My son is in the process of diagnostics. So far his ticks have been coming and going but he has started one now that is making him miserable .. he can't focus on homework and it is making him sore. I have Tourett's myself but it is very very mild now... but as a child it was bad. I know what he is going through and it is killing me. I wish, like you, there were other people around... to talk but also that my son could meet another child with Tourett's to know he is not alone.

Has your son been officially diagnosed? Is his case mild or severe?


10/15/2012 03:23 AM
SceneMissing
Posts: 2
New Member

I know this is a very late response, but what the heck.....Yes, he has been officialy diagnosed. I wouldn't say his case is mild or severe. Its in between. There have been times its been so severe he has trouble eating and drinking. But right now, his severe tic frustration is pretty rare. It happens, but not like before. He has some bad nights, but most of the problems now are "OCD". He says there's a difference between his tics and OCD. I'm not going to argue with him, but it makes things difficult.

10/15/2012 09:47 AM
Nevayda
 
Posts: 7675
Group Leader

Hi SceneMissing, it's good to hear from you and know how your son is doing. One wonderful thing about this site is we can't forget what was posted and can respond at anytime.

It is possible to go thru the members on this site and read their profile and pm(private message) another parent who has a child around the age of your own. That may be one way to find support from others who know what you and your child are going thru. Altho, it looks as tho few post, actually, many more do read these posts. We have had a number of parents with children who have joined this site.

There is a paperback book available thru amazon.com called "Taming The Tiger", which helps you to understand how your child who is dealing with TS, learns. It also gives steps to help them overcome their difficulties. I found it particularly helpful not only for helping with school, but also for my own information and learning more about what my daughter was dealing with.

She also had the focasing issues, and the OCD, better now as an adult than when she was a child, but we feel so darn helpless and full of grief (at least I did), when we're not actively solving problems or helping them solve problems. The book is not expensive, under $10.00 I think, and it just might be what you need.

I live in a rural area and we seldom have support meetings due to distance and few members. But, recently, we were contacted by email from the group leader to see if we would like to meet at a park to welcome a new member with an 8 year old child who needs to meet others. We met another time farther away from my home at a bowling alley which the kids really enjoyed. One child had tics that were severe and I know she had a great time getting out in public where she was surrounded by supportive caring others who totally understand. Is it possible to call a group leader and make a suggestion to meet at a public place for an activity in an area that would be middle ground for the members?

Hugs to you and y our son.

Post edited by: Nevayda, at: 10/15/2012 09:49 AM


10/16/2012 05:26 AM
ts1999
ts1999  
Posts: 13
New Member

Hi there,

I really feel for what your son is going through because I know first hand what its like from my own personal experience dealing with TS+.

You may have read my article posted on this site on Aug-23-2012. In there I discuss all the meds I tried since being diagnosed. From both personal experience and everything I read, Clonidine is the med having the best side-effect profile. I take 1/2 of a .025mg tablet every 3 hours for a total of .125mg per day and I have virtually no side effects and it is effective in controlling my symtoms. I put a reminder on my cell phone so it rings every 3 hours at the same time every day that way I always remember to take it.

A big hug to you and your son

Reply

Share this discussion with your friends:
<< Start < Prev 1 Next > End >>


Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.
In case of EMERGENCY call 911 or 1.800.273.TALK (8255) to the National Suicide Prevention Lifeline. Read more.
Contact Us | About Us
Copyright (c) 2006-2014 MDJunction.com All Rights Reserved