20 answers

Child Tourette Syndrome

Does anyone have any experience with tourette's? My daughter is four and she is showing all the signs of having tourette's (she does a little upper body shake and a little noise coming from her mouth like she is holding her breath). She has been doing it for over a year now and probably more than 20 times a day, at random times, and usually when she is excited or proud but also when she is just watching tv or doing a calm activity. Six months ago I showed her pediatrician a video tape and she wanted to get and EEG on her, but we never got through. it (we did go to get it but our daughter would not coooperate). Now I am reading that there is no test for it, just observation. I found a few good websites, but any other suggestions or information with this firsthand will be helpful. Thanks.

What can I do next?

So What Happened?™

We had an appt with a pediatric neurologist last week and they diagosed our daughter with a movement disorder called complex motor stereotypie, and hooray, no EEGs were ordered. They said hopefully she will grow out of it, but if not, as she gets older, she will learn ways to cope with it if it becomes a problem or if she is bothered by it. Thank you for all of your helpful responses.

Featured Answers

HI,
I agree with the other mothers. You must get a EEG, this is not a diagnosis you can make. It could be something other than what you think. Please do what the doctors ask you to do. I wonder why you are resistant?
L.

More Answers

My son has Touretts. He has vocal and physical tics but doesn't have the stiffening or shaking you mentioned. It doesn't sound to me like she has Touretts but rather possibly siezures. I'd go in and have the EEG done to rule out other things before jumping to conclusions. It's always better to be safe than sorry.....

Good luck - S.

I agree with the other comments, I use to witness my dad having seizures and it sounds just like what you describe.
Call the Dr and get the tests done, nothing bad will come out either youll find out its not serious or they will find out what is wrong and find the best way to treat it, doing nothing will only make it worse. I wish you the best and hope all goes well.

My grandson got wonderful help from the Children's Hospital psychiatric department. He's been on medication for years and he does not have the tics on it. He was already in school and being teased a lot when this was diagnosed. Some kids seem to have minor tics that they grow out of, but the teasing and lack of confidence are issues that must be dealt with. I highly recommend these folks. Our grandson was treated by Dr.David Rosenberg but I think he mainly works with adolescents. Anyway, I'd call CHM psych dept. Another doc might just blow this off. An eeg won't hurt or anything, by the way. Good luck!

HI,
I agree with the other mothers. You must get a EEG, this is not a diagnosis you can make. It could be something other than what you think. Please do what the doctors ask you to do. I wonder why you are resistant?
L.

I have a son with taurette syndrome. It started with eye blinking and progressed into more serious tics including wispering and repeating everything that we say to him or he sees on TV. When I was growing up, I had similar simptoms, but no verbal tics. Eventually, I outgrew them, when I was a teenager. They still come back once in a while if I am under a lot of stress. I spoke to neurologist, who recommended medicine, which we refused to take. I had the pleasure of knowing a great naturopath, who unfortunately recently passed away. He recommended a group of herbs and vitamins to help with the tics. I highly recommend you try them and anyone who has a child with taurette does as well. Here is what he recommended: Calcium, Vitamin C -best if you get Esther C, Taurine, L-Tyrosine, Gaba (absolutely essential for taurettes), Chamomilla 6X, Magnesium. All the dosages can be checked by asking the homeopath at the health food store. I will explain the reason why you need all these vitamins and minerals. When a child has taurette syndrome, he/she is lacking certain minerals in their body, such as calcium. The immune system also needs to be kept up. That is why you need to give them vytamin C. Unfortunately, the doctor we saw is no longer with us. He was a great doctor and helped my son a lot. I would also consider the diet your child is currently on. Try bying all natural food. I would only stick to eating chicken and turkey from meats. I hope this will help you and good luck.

I do not have any experience with this, but even though I am a naturalist... I would recommend getting the EEG. This way, you and your family (and doctor) will have a better understanding as to what is occurring with her... There may be something more that can be done after the EEG is performed.

Otherwise, you could always benefit from Acupressure (I hate needles myself unless you want to try acupuncture as they are painless - or so I am told!), Cranial Sacral, or any of the other healing arts.

Best of Luck!!!

First of all please dont go by what you read on line that information isnt always accurate, ask your doc, they will know best, if they want to do tests, they may want to see what its not before they diagnose anything. Go to Spectrum Childrens Hospital, talk to docs there, get a couple opinions and go from there.

Good luck and God bless.

Hello J., Follow through with the EEG, your doc wants to rule out other things which could be much worse for your daughter. Don't try to self diagnose her, there are many other things that can show these behaviors like epilepsy. Good luck.

J.,

But not getting the EEG, you are just avoiding a fast diagnosis and solution. I understand that it is scary, but it may end up just being something minor and easy to treat/fix/discount. I strongly urge you to get the test done. Fast diagnosis can make a world of difference in future life.

E.

My nephew has Tourette's and he never did any shaking and stiffening. My sister was told originally he was ADD and they wanted to put him on medication for that with out doing a lot of checking and research. She did the research and pushed the doctor because she didn't want him medicated. From the sounds of it, I would have her checked because of the possiblilty of other issues. The stiffening and shaking is also a sign of Autism and you will see that at the younger age, and not necessarily the Tourette's. Spend the time with your doctor to rule out everything before jumping to conclusions on your own. They are the ones who have the schooling and knowledge.

J., if you aren't going to follow your docs suggestions, then why did you go to her? Please know Im not trying to be rude...just practical. There is no harm in getting an EEG, it's painless and necessary to rule out an underlying diagnosis. There are treatments for Tourette's and lifestyle changes that make huge differnces in the lives of those affected by it. I urge you to do all the tests and seek a referral to a specialist. You can help your daughter the most by ruling out what this 'isnt' as much as finding out what it 'is'.

~L.

If I were you, I would go ahead and get the EEG done to rule out seizures. The things that you describe sound more like that to me. Better safe than sorry, and EEGs are a fairly easy procedure (even for kids).

You really should get the EEG, that will rule out any disorders of the brain, such as seizures. Not to scare you, but avoiding the tests could be damaging her brain, especially if it is a seizure disorder. Tourette's is pretty rare especially in girls. Good luck

Hi J.,
You really should have the EEG. What your daughter is presenting could be somethings other than Tourette Syndrome. I have a special needs daughter who does these things that you are describing and she does not have Tourette, she has Rett syndrome. These symptoms also present in many other disorders or syndromes. These types of symptoms you are speaking of could be neurological or neuromuscular. An EEG is a good place to start. It will probably take you a while to get in for one, could be a few months. I would suggest while you are waiting, keep a small diary about your daughter. I know it is not easy with a one year old, but it may help the doctors figure out what the issue is. Even if you jot down things on your calendar. How long do episodes last, how often during the day does she do these things...what is she doing before they happen..is she eating some type of food, watching a certain program,etc...how is her sleep, her eating habbits, etc. This sounds like a lot, but it is really important information that can help you and your doctors with these issues. Good luck to you and your family! S. P.

I cant believe you wouldnt allow the dr to test - its completely non invasive yes? it would rule out other things - what if she is having seizures and its not tourettes? what if damage has occured? trust me I am not trying to scare you and I am very anti doctor but in this case I think you had better do the best by your baby and get a bit more evaluation by a professional - good luck to you and your family I wish you the best!

Do get the EEG, seizures can be so dangerous, and really need to be kept under control. I don't know much about Turrets, but my baby sister had seizures frequently for awhile until they were able to get it under control. Knowing the risks, it was very scary. Do get a definitive medical test on that. I'd hate for you to have to live with having missed the chance to get it under control (if it did turn out to be seizures) if something did happen. Good luck, and keep us informed!

Get the EEG and any other tests your doctor recommends if your child has symptoms that are unexplainable. It may not be Tourette's and how would you know if you don't rule out everything else first.

Hi,

without having any medical background or solid reason for it, my 1st thought was epilepsy. I have 2 friends whos kids have/had it where they were NOT the typical signs. Both got diagnosed around the age of 10 when it got to be disturbing in school and was concidered a behavioral problen to start with. Good luck, J. mom to Vanessa 9½ and Mark 16 and living overseas

J., the reason for the EEG is to check for OTHER problems!
DON'T put it off, what if there is a brain tumor? Hon, it might be scary, but do not wait, have her checked NOW. My son had the same symptoms at 3, had a small tumor, had it removed and he is fantastic! Please have your child see a neuroligist. Good luck.
K.

J. - both of my children have Tourette's Syndrome as well as my sister and father. There is no medical test at this time only observation. You need to find a neurologist to diagnose it. The Tourette's Syndrome Association has a great website with lots of info. There is also a Michigan Tourette's Syndrome Association support group.

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