My sons experience eye rolling/blinking???


Posted by Lisa Pilon , Feb 26,2001,13:08   Archive
My 7 y.o. identical twin sons are finally been diagnosed with Paroxysmal Dystonia after symptoms since birth. First early symptoms at 2 y.o. were excessive eye blinking, to the point people thought they were tired.

Now at 7 y.o. the eye blinking has come and gone along with other dystonic movements (cervical, leg, hand, all on right side). Nicholas just came out of a remission with a vengence. He is blinking but mostly shifting/rolling his eyes from right to left or just to the right, almost looking like a seizure (which has been ruled out already). He tries to concentrate during the movements but the processing is getting fuzzy and he often has to ask us to repeat what we were saying during the episodes (5 seconds each, often back to back).

Does this sound at all like a part of blepharospasms? I thought bleph. was eye lid related not eyes themselves. Is the eye rolling blepharospasms or considered a separate type of dystonic movement?

We are used to the eye blinking and winking, but this is a new one and has us a little freaked out. We have seen some eye rolling after a bad cervical espisode lasting 15-20 seconds (between the cervical movement and ending with the quick eye rollig and blinking).

Thanks for your input.

Lisa

Mom of Jessica 14, and Chris & Nic 7 (twins with dystonia).




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Re: My sons experience eye rolling/blinking???

Re : My sons experience eye rolling/blinking??? --- Lisa Pilon
Posted by Lynn Yarbrough , Feb 26,2001,14:00 Top of Thread Archive
Your twins' condition sounds like something different from BEB, although they may also have BEB. I personally don't know anyone with symptoms like theirs. It also sounds like you are in for a rough time of it in helping them to develop normally in any sense. We all sympathize with your concerns. I hope your experience with this Bulletin Board will be a positive one.

I happen to have a Doctor who has issued tens of thousands of treatments for BEB and related dystonias, and I would have a hard time trusting someone with lesser experience for something like your childrens' conditions. What part of the world/country do you live in?

--- Lynn




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Re: My sons experience eye rolling/blinking???

Re : Re: My sons experience eye rolling/blinking??? --- Lynn Yarbrough
Posted by Lisa Pilon , Feb 26,2001,16:00 Top of Thread Archive
We are in Nebraska but lived in California when they were born. We ran into difficulty with diagnosis in both communities (CA either thought it was cerebral palsy or that we the parents needed to stop looking so closely at our kids).

Nebraska doctors at least finally defined the diagnosis but give us little hope on how they plan to approach it. Luckily the symptoms subside on the most part during school hours, thus children have no idea what the boys suffer from. The teachers don't really see or at least recognized the symptoms. I think they exhibit them mildly at school but the teachers are too busy to realize they are not just a typical "wiggly" 7 y.o. Which is fine I guess. But it makes explaining our situation exhasberating to say the least. If it weren't for the video tapes of the cervical and eye dystonia, they would think we were kooks.




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Re: My sons experience eye rolling/blinking???

Re : Re: My sons experience eye rolling/blinking??? --- Lisa Pilon
Posted by Lynn Yarbrough , Feb 26,2001,19:26 Top of Thread Archive
Phew. What a situation. My guess is that you might find more experienced Doctors in a highly populated area like LA or SF or Salt Lake City than Nebraska, but until you get a definitive diagnosis it's hard to say what to do. While Botox is probably the treatment of choice, I would hesitate about giving it to a 7-year-old - the shots are painful and in an extraordinarily sensitive area, in the eyelids and adjacent muscles, and seem likely to traumatize kids so young. (I had my tonsils out when I was 4 and have completely blocked out everything up to my 5th birthday.)

Well, I guess all I can do is include you in my prayers. I will certainly do that.

---- Lynn




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Re: My sons experience eye rolling/blinking???

Re : My sons experience eye rolling/blinking??? --- Lisa Pilon
Posted by Shirley-Arkansas-USA , Feb 26,2001,20:25 Top of Thread Archive
Hi Lisa,
I'm certainly not an expert, but it really doesn't sound like Blepharospasm to me. It does sound neurological, though. There is a condition called Nystagmus where the eyes make quick darting movements back and forth. A neuro-opthalmologist might be a good specialist to see regarding the eye-movements or a Movement Disorder Specialist in Neurology. Possibly at a teaching hospital, you might find some luck with a diagnosis and or treatment. Sorry, I can't be of more help. Keep looking.

Shirley in AR.




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Re: My sons experience eye rolling/blinking???

Re : My sons experience eye rolling/blinking??? --- Lisa Pilon
Posted by Carolyn Smith , Feb 26,2001,21:09 Top of Thread Archive
Lisa,
I have a son-in-law that has been diagnosed with tourette and he has several tics that sound so much like your son's. He has had this all his life but the parents never got a diagnoses and thought that it was a habit. My grandson was also diagnosed with tourette but has only had the tics for a short period of time (lasting only a few days) then everything goes back to normal. My son-in-law does the eye-rolling and jerks his head, and always a cough. I understand that his uncle also has tourette.

This doesn't sound like blepharospasm but I definately think that you need to check with doctors that specialize in movement disorders. I wish you the best and if I could help you in any way, I will try to do so.
Carolyn
Plano, Tx.




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Re: My sons experience eye rolling/blinking???

Re : My sons experience eye rolling/blinking??? --- Lisa Pilon
Posted by joanne johnson , Feb 27,2001,12:40 Top of Thread Archive
Hi Lisa. I can't address the eye rolling in terms of BEB. I can address the short term memory loss. I am trying to complete a Tai Chi course, which I hope helps me with my coordination and balance. It's been very frustrating to remember the first 2 of 6 instructions. People are sometimes very frustrated also, in that I ask the same question, when it's been asked before, and answered before. It's been difficult for me to be like this, but the attitudes, and lack of understanding from people I am close to, has been the most difficult for me.



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Re: My sons experience eye rolling/blinking???

Re : My sons experience eye rolling/blinking??? --- Lisa Pilon
Posted by Kelly Saffell , Mar 16,2001,08:39 Top of Thread Archive
I haven't been on the bulletin board in a while and just saw your posting. I developed beb at 26 which was very young. When my daughter was 3 she began excessive blinking and eyelid squeezing. I freaked! We called the foundation and were told that usually in children that is a beginning sign of Tourettes (?spelling). We video taped her and took her to see a pediatric neurologist. He felt like it was a short term stress reaction to the birth of our new baby but to watch her for other symptoms. She never developed anymore and the eye problems went away after about a month. Has anyone considered Tourettes?



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Re: My sons experience eye rolling/blinking???

Re : Re: My sons experience eye rolling/blinking??? --- Kelly Saffell
Posted by Shirley-Arkansas-USA , Mar 16,2001,10:27 Top of Thread Archive
Kelly,
There was young man who posted on this bb some time ago that had been dianosed with BEB and later was diagnosed with Tourettes. He was still given botox for the Tourettes (eye symptoms). I had never heard of botox being given for eye symptoms of Tourettes. Although, I guess that it might work. We have not heard from him again. I believe that he saw Dr. Jankovic in Texas. ?
Alan Phair, who posts on this bb, had a granddaughter that they thought was developing symptoms of BEB. But, it turned out that she was just mimicking her grandpa. He just had a lower myectomy done but if he is able to see this, he may respond also.
Some cases of BEB do develop at a young age, though, so it always is a possibility.


Shirley In AR.

--modified by Shirley-Arkansas-USA at Fri, Mar 16, 2001, 10:29:20




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