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-   -   I think my son has Tourettes (https://www.neurotalk.org/tourette-syndrome/188769-son-tourettes.html)

ecmom 05-20-2013 01:20 AM

I think my son has Tourettes
 
My son is 9 years old and was diagnosed with celiac disease about 3 years ago. I mention this because I also have celiac and I know that neurological issues can go hand in hand with it.

He started having little tics a few years ago, but they were transient and never very pronounced. I did some googling and read that kids can get transient tics and it doesn't mean they have a tic disorder.

In the past 5 or 6 months his tics have gotten really pronounced. He has 3 vocal tics right now- throat clearing, a hard to describe nose clearing thing and a squeaky noise. He also has 2 body tics- squeezing his hands repeatedly and waving his hands in the air next to his body.

He has trouble with handwriting and I read that dysgraphia can be part of TS. He is a high achiever academically. He is in 3rd grade but reads at a high 6th grade level. He could probably write 3 pages of a story if his handwriting didn't stop him. Because handwriting is so difficult, he writes just a few sentences.

He also will occasionally have an emotional reaction to certain things that is way over the top for what occurred. If I correct him, he can be really sensitive and get his feelings hurt, or feel like he is a horrible disaster of a person just because I tried to help him with some math problems that he missed. If another child teases him at all, even just joking, he can fly off the handle and get so angry he yells, or sobs uncontrollably.

On the other hand, he is a very social kid. He has a ton of friends and can make friends easily if we go to the park, etc. But if he gets teased he just cannot handle it.

Even though he is sensitive to being corrected, at times he will display a negative behavior repeatedly, no matter how many times I nicely ask him to stop until I have to be more harsh with him. Then he will stop the negative behavior but get overboard upset that I gave him a punishment or used a harsher tone of voice.

I'm reluctant to seek diagnosis of Tourettes. I'm concerned about his self esteem. Even though he is a high achieving child academically as well as in extra curriculur activities, and even though we are encouraging parents who give him a lot of love and support, his self esteem can be fragile. Celiac has been hard on him. He also was treated for amblyopia which thank God has responded and is gone. Another diagnosis is going to be tough for him to accept.

His tics are not debilitating at this point and I wouldn't medicate him unless it was a last resort. So if I"m going to try natural treatments, which I assume I would likely have to pay for, I'm not sure that putting him through testing or whatever to get him evaluated will be beneficial for his self esteem.

I would be so grateful for input from the people on here. Please feel free to tell me if my thoughts on diagnosis are off the mark, or if there is a benefit to having an official diagnosis that I'm not aware of.

Does he sound like a Tourettes kid to you?

Thanks!

Lara 05-20-2013 02:08 PM

Hi ecmom,
Welcome to the NeuroTalk Support Groups!

I guess the reason I would think a diagnosis would be helpful is for accommodations in school.

He should be using a computer. The dysgraphia (which my own son struggled with) alone should have the teacher talking with you and suggesting some ways to help. Instead of needing to write everything out he should be able to be doing that on a computer if that is easier for him and he definitely shouldn't be marked on the way his writing looks or how long it takes him to struggle out a page of his own writing etc.. More on this link from TSA about Dysgraphia and accommodations.
Handwriting Issues
by Kathleen J. Giordano, TSA Education Specialist
http://www.tsa-usa.org/aeduc_advoc/h...ing_issues.htm

His tics sound like tics. Some of his behavioural issues sound just as if he's a sensitive child and considering he's had a number of different health issues over the years that would be perfectly understandable I would imagine. It's great he has good friends and enjoys social activities. It might be helpful to teach him some anti-bullying techniques. Teasing is just not on and it would make anyone sensitive. If teasing is occuring in school then the school needs to address that ASAP.

If he has both motor and phonic tics and he's had them on and off for a few years then technically it could be TS. There are ways they can be addressed in the school setting as well. It's not really something that other children will ignore straight up and it really can be very helpful that the teachers and the students be educated about tic disorders.

If one was home-schooling, I would think that getting an actual diagnosis would not be so necessary, but in the school system where there are modifications and accommodations in place to assist a child to achieve their very best, then I would think that is very important, but that's just me. Back when my son was having these issues in school we had to fight so very hard just to get a few accommodations.

http://www.tsa-usa.org/aeduc_advoc/g..._at_school.htm
Getting Help at School
by Kathleen Giordano, Education Specialist, TSA

http://neurotalk.psychcentral.com/thread1872.html
The Gluten File

from

http://neurotalk.psychcentral.com/forumdisplay.php?f=13
Gluten Sensitivity/Celiac Disease

Latitudes would have a lot of helpful information for you as well regarding Celiac Disease.

Chemar 05-20-2013 07:40 PM

Hi and welcome

I honestly feel a lot of kids are misdx with TS when in fact there are other causes for their tics. Yes, your son may have TS...but I have heard of so many kids with tics and other neuro issues that are environmental or dietary triggered, as well as from other factors.... so it really is worth investigating more.

Having the "official" TS diagnosis did help my son through school, especially when TS was finally recognized under ADA for education. We had a 504 plan for him and it really helped a lot to foster understanding from teachers etc. His tics were pretty intense at that time.

"Natural" treatments (dietary modifications, supplements and environmental changes to attempt to eliminate known triggers, along with acupuncture etc) were very beneficial for my son, and now he is in his 20s and very mild tics.

Hope you find the answers you are seeking.

Lara 05-20-2013 08:58 PM

ecmom,
Just adding on to something Chemar has written regarding other causes of tics and I totally agree and have seen it with my own eyes over the years...

An actual diagnosis of TS would usually only be made by ruling out other conditions. There aren't any tests for TS as such and it's really just a name of a condition that tends to follow a particular pattern or cluster of symptoms.

A diagnosis by someone such as a Neurologist would usually be made by observation and history and by ruling out other conditions.

There are actually quite a number of secondary causes of tics (Tourettism). Some medications and a number of health issues can cause Tourettism. There is also Stereotypic Movement Disorder and some people on the Autism Spectrum also have tics. Some of the movements of Sydenham's Chorea can be mistaken for tics as well. It's all very complex. I guess that's why I carry this idea with me all these years that it's really important for investigation in case there is some serious medical reason for the onset of tics.

ecmom 05-21-2013 09:55 PM

Thanks so much for the fast replies!

Chemar, I have read many of your posts talking about what you did for your own child. Thank you for putting all that out there!

We homeschool and always have. I was a classroom teacher for 10 years and I worked with special needs kids a lot as their mainstream teacher for science, P.E., art, etc. I have been accommodating for him by letting him dictate to me, allowing him to write shorter answers, and not pushing so much with the writing. He is very adept with computers but hasn't learned formal keyboarding. I told him that he can start typing out his written answers and he's excited to get a keyboarding program to learn how to type effectively and fast.

It also helps that he is on a private homeschool Minecraft server now and being a fast typist will make it easier to chat with his friends when they play.

After reading Chemar's posts I decided to try him on some good multi vitaminsa and magnesium. I had panic attacks and after reading the connection between magnesium and anxiety I started taking it. I had rapid improvement from panic attacks within 24 hours.

Well I put him on magnesium the last 2 days and his tics improved a lot. They are much less severe, one vocal tic is gone so he's down to two of them, and he isn't doing the hand squeezing anymore.

I also suffered from tics in the past but never vocal ones and all mine were hidden, like squeezing my leg muscle or calf muscle or tensing my shoulder. I have no other symptoms of tourettes and I have never had vocal tics.

Celiacs, even after treatment, often have vitamin deficiencies and just don't process their food right. I've been juicing and also doing green smoothies for the past 3 months. My kids occasionally have them, but I'm putting him on them daily now. Keeping the vitamins and magnesium, and see how it goes.

I really appreciate being able to come here for support.

Lara 05-23-2013 03:54 PM

ecmom,
That's great you are homeschooling and are a teacher. That must definitely help. I sometimes wish I'd been in a situation were I could have homeschooled but it wasn't possible at the time.
Keep up the good work!


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