Blepharospasm Bulletin Board

Just recieved shots
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Posted by: jcowing
04/05/2004, 22:35:37


Hello everyone,

It's been awhile since I have been hear my son was doing extremely well, Key word is "was" he just went in for his shots again on 4-1-04 and now he seems worse than ever. The Blinkies seem to never stop now and the light really hurts his eyes, He wears his sun glasses almost all day and night, I know it has only been 4 days but I'll tell you I feel for this kid. Anyway I hope they get better soon. I hope all of you helpfull people have a wonderful day and thanks for listening.

Joshua's Dad




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Re: Just recieved shots
Re: Just recieved shots -- jcowing Top of thread Archive
Posted by: June in Toronto
04/06/2004, 11:11:43


Hi Joshua's Dad - its worrying for a father as much as it is for a mother isn't it? When I get my botox injections it takes 4-6 days before I feel anything different at all (eyes still spasm and blink) (and up to a month before I feel better!) - perhaps Joshua is the same. What was his reaction the last time? How many units of botox does he get and remind me of his age again please (I have senior moments). God Bless Joshua

June in Toronto




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Re: Just recieved shots
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Posted by: jcowing
04/06/2004, 16:00:51


Josh is 16 years old now and was diagnosed when he was 13, This time seems worse than the others, Blinking uncontrolably, light hurts his eyes and has cold type symptoms. I must say though today he seems better or I getting used to seeing him this way. As far as how much I never gave it a thought to ask all I know is he take 14 shots around his eyes and it seems to hold him over for about 6 -6 1/2 months. talk with you soon


Jerry




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Re: Just recieved shots
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Posted by: Ann Doyle
04/06/2004, 17:27:36


Some people have flu like symptoms for a short while after Botox. It is good that it lasts 6 months. I get 21 shots and a lot of units but it only lasts 5-6 weeks.
It is hard enough being a teenager but to have Bleph too would really make it difficult.
As a parent, I know it would be so much easier to have it yourself than to see your child live through it. It must be very difficult. Ann Doyle



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Re: Just recieved shots
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Posted by: Claire from Canada
04/06/2004, 20:13:20


Hi,

Tell Joshua to hang in there (you, too!!). Hopefully, the doctor and Joshua should be able to find a happy Botox/meds/tricks solution (band-aid solution, but something that will make life easier). It's a trial by error process. It took my doctor and I 15 months to come up with something liveable for me.

Good luck!!

Claire from Canada




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Re: Just recieved shots
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Posted by: Cynthia
04/06/2004, 20:25:16


Joshua is fortunate to have such a caring dad who can help him through this. I would take a double dose of BEB if Joshua didn't have to have it at such a young age. Please keep us informed on how he's doing. It must be difficult to concentrate in classes at school. I hope his teachers are supportive and his classmates understanding.
Prayers,
Cynthia in IL



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Re: Just recieved shots
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Posted by: jcowing
04/07/2004, 14:06:57


Thanks for all of the input, Josh is hanging in there and he gets very upset when he can't focus on his school work. I will have to say that most of the kids at his school are pretty good about this issue as far as the school faculty,,,,Well lets just say it is a learning experience for everyone. You are all correct I would rather of had this happen to me than my son it is very frustrating



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Re: BEB and Our Children
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Posted by: June in Toronto
04/07/2004, 16:06:09


Yes I know anyone of we parents would rather take on this disease than our children have it. We all worry that it might pass it on for them in the future - in some cases dystonias are hereditary even if there isn't 100% proof of that in all cases. I know at least one of our male posters who has a few different dystonias in his family - he has beb himself. Good for Josh dealing with this , its definitely not easy, especially for one so young as him.

June in Toronto




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