Update on my 7 year old

[juliek75]

I took him to Children's in Pittsburgh and the neurologist still will not diagnose him with Tourette's because even though he's had the facial tics for 3-4 years he's only had the vocal tic for 3 weeks.  Apparently the vocal and motor tics must both be present for a year.  She did however give us a prescription for clonidine, so we'll see if that works or not.  My niece who is 16 was diagnosed with Tourette's about a year ago, so yes there is a family history, also the after discussing the issue with DH's family there is probably a few cases of undiagnosed minor Tourette's.  Anyhow because of my son's neuro history (see last post) the Dr. ordered a MRI of his brain and it came back mostly normal except that he has what's called Chiari 1 Malformation, has anyone here ever heard of this before??  The Dr. doesn't think it has any connection to the tics, but I think after what I've learned about this condition that I am going to seek a second opinion.  I hate that when Dr.'s actually find "something" but it's always "mild and shouldn't cause any problems"  HELLO, he is having problems so isn't it worth investigating the problem further?

Julie

[kaismommy]

sorry forgot to put who that was for lol.... i could blame that on tourettes but ummmm well im just blond lol ;)

[kaismommy]

hey how are you doing?
Arnold-Chiari malformation is a malformation of the brain. It consists of a downward displacement of the cerebellar tonsils and the medulla[1] through the foramen magnum, sometimes causing hydrocephalus as a result of obstruction of CSF outflow... i know this can be alot to take in.. but heres SOME of the symptoms of ACM..
cranial nerves, and the lower portion of the cerebellum may be stretched or compressed. Therefore, any of the functions controlled by these areas may be affected. The blockage of Cerebro-Spinal Fluid (CSF) flow may also cause a syrinx to form, eventually leading to syringomyelia. Chiari is often associated with major headaches, sometimes mistaken for migraines. Chiari headaches usually include intense throbbing in the back of the head. Chiari also includes extreme muscle soreness, facial pain, hearing problems, and low energy levels. It also can cause insomnia cycles of sleep deprivation followed by inabilities to remain awake cycling between them. 15 - 30 % of patients with adult Chiari malfomation are asymptomatic.

whats striking out at me is, most people diagnosed with this is around the age of 34 or on and it normally is in females not males...im not saying males cant have it...i have severe ts and would be MORE then willing to talk to you...even give you test names that NEED to be done for ts and some very good drs...
i can also email you lists of medications as well as certain things to look for in your son..i also have a long history of family having ts or the ones who went with out being diagnosed including my diseased biological father...
plz plz feel free to email me :) from what your saying it sounds like ts but theres also a couple other syndromes that are VERY similar to tourettes syndrome...

my email is  briecookie4u at yahoo *******