Newly diagnosed
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Posted by: jcowing ® 07/25/2003, 13:34:23 Author Profile Mail author

Hello, My teenage son has just been diagnosed this year with this condition and I was hoping there were some options he might have. He has had one Botox injection in April and it seems to help but getting a follow up appointment is crazy. We live in the Boston MA area and any information or experiences would be greatly appreciated

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Re: Newly diagnosed
Re: Newly diagnosed -- jcowing		Top of Thread	Archive

Posted by: Lynn Yarbrough ® 07/26/2003, 12:30:34 Author Profile Mail author

I have had experiences very much like your son's. I was diagnosed (1990) at Mass. Eye & Ear, got my first Botox shots off-site by Dr. Gary Borodic, who was the only one doing Botox in Boston at that time. I was delighted to _finally_ get a correct diagnosis and some real treatment, since I first showed symptoms in 1960 but was misdiagnosed twice. Incidentally, showing symptoms as a teenager is very rare; the condition usually shows up in one's 50's or so. If travel is easy for you, you might want to try going elsewhere: Dr. Neil Miller in Baltimore (Johns Hopkins/Wilmer Eye Inst.) is expert at BEB and Botox treatment, and I am told there is another savvy Neuro-opth at Univ. of Vermont in Montpelier. There is a new Motion Disorder center at Rochester, NY run by a true BEB veteran, who has dispensed some 10,000 Botox shots. Drat! Can't recall his name right now. (Old age SUCKS!) Of course, the reason getting appointments is so hard is that hardly anyone has ever heard of BEB, much less knows how to treat it. Most General Practitioners have never even seen an actual case of BEB, and correct diagnosis is just now reaching up to the level of endangered species ... It's little comfort, so be aware that this condition is usually permanent and recurring, so your whole family will have to become involved in it. There is nothing to be ashamed of. At its worst, the condition prevents driving (my wife had to drive herself to the hospital, with me as passenger, for our second child) and limits some other activities, so someone else has to be involved, especially at treatment time. And there will be endless misunderstandings and explanations about the nature of the condition and its treatment. Still, it is possible to live with it and even to do well. I am able to drive anywhere for about 11 months out of each year and have recently retired from a long and fulfilling career as a computer scientist, so anything is possible. Cheers, --- Lynn

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Re: Newly diagnosed
Re: Re: Newly diagnosed -- Lynn Yarbrough		Top of Thread	Archive

Posted by: Lynn Yarbrough ® 07/27/2003, 17:47:25 Author Profile Mail author

>Can't recall his name right now. < Dr. Steven Feldon. --- Lynn

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Re: Newly diagnosed
Re: Re: Newly diagnosed -- Lynn Yarbrough		Top of Thread	Archive

Posted by: jcowing ® 07/29/2003, 12:31:49 Author Profile Mail author

Thanks for the information I will try to contact these other doctors and see what can be done. Now I just wait for an appointment to become available for my son so he can have his shots. Unfortunatly he had to quit working because the earliest appointment I can get is 6 six weeks out. I told my son that he would probably be able to drive and have a normal life like every one else plus have some pretty good looking eyes when he is my age. again thanks for the information Jerry

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Re: Newly diagnosed
Re: Re: Newly diagnosed -- jcowing		Top of Thread	Archive

Posted by: Keith_P ® 07/30/2003, 09:53:44 Author Profile Mail author

I am very sorry about your son it really is terrible for someone that age to get this awful thing! I advise you to find the best neuro you can now and find out what is going on. Skip all the general practitioners who know nothing about BEB and go to the experts. Yes, some cases get progressively worse over time, but some do not at all. Some eventually dissipate over time as well. My NEURO has BEB for 6 months due to extreme stress and never had symptoms again. Try Klonapin it really helped me alot!

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Re: Newly diagnosed
Re: Re: Newly diagnosed -- Keith_P		Top of Thread	Archive

Posted by: Ann Doyle ® 07/30/2003, 11:30:05 Author Profile Mail author

Also, you might want to make an appointment now for your next time. My Dr. is so popular that when I am in there, I make my appointment for 10 weeks. A already have one for 10 weeks that I made the last time I was there. He is with a Movement Disordrer Clinic and only does Botox on Thursdays. Ann Doyle

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Re: Newly diagnosed
Re: Re: Newly diagnosed -- jcowing		Top of Thread	Archive

Posted by: Keith_P ® 07/30/2003, 09:54:25 Author Profile Mail author

I am very sorry about your son it really is terrible for someone that age to get this awful thing! I advise you to find the best neuro you can now and find out what is going on. Skip all the general practitioners who know nothing about BEB and go to the experts. Yes, some cases get progressively worse over time, but some do not at all. Some eventually dissipate over time as well. My NEURO has BEB for 6 months due to extreme stress and never had symptoms again. Try Klonapin it really helped me alot!

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Re: Newly diagnosed
Re: Re: Newly diagnosed -- Keith_P		Top of Thread	Archive

Posted by: jcowing ® 07/30/2003, 15:03:45 Author Profile Mail author

I have so much to learn about this! I have been to the childrens Hosp. in boston and they were of no help at all. Now he is currently going to Beth isreal/Deaconess Hosp. I hope it's a good one and I'm trying to get apointments at some of the others mentioned. I really thank you all for the input.

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