Posted by: mattsmom ®
01/23/2010, 01:04:15
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Hi, I am new to this board. I am normally on the dystonia BB, which has been extremely helpful, and many people feel that my son may be suffering from dysphonia, so I felt that it may also be helpful to post on your board as well.
My son is 11 yrs. old and has myoclonus dystonia. In the past he had a problem with his diaphram spasming when he had a cold and it sounded like he had loud hiccups for 2 weeks. He has always suffered from voice tremors when he is nervous. More recently he has began to huff (push air out)between words. Gets light headed and dizzy when he needs to work so hard with speech. This symptom gradually worsens throughout the day, by 9pm you can hardly understand him. He also has days where just normal breathing is difficult and he needs to take huge breaths just sitting doing nothing. He says that these two symptoms are completely different. Last but not least, he is also complaining about difficuly swallowing at times. The pediatrician checked him out and found nothing wrong because it was early in the day. We have an appointment with his movement disorder doctor on Tuesday. I have made videos to take with me, of him at his worst. I am hoping that he can get some kind of help. It is so hard to sit by and watch him struggle to breathe and get each word out.
I am trying to figure out wheter these symptoms are dysphonia, repiratory dystonia or ticks. Over the phone the doctor was talking as though it may be a tick. This was what they said about his eyes for 8 yrs and now they say it's probably myoclonus in his eyes.
All of his symptoms disappear during sleep, althoug he recently had an eeg that came back with abnormalities and they have booked a full night sleep test.
My sons doctors having been leaning toward DBS for all of his other dystonia symptoms. Does anyone know if this works for dysphonia. I apologize for babbling.
Any input would be greatly appreciated!
Thank you, Cathy
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