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Old 09-26-2012, 12:51 PM   #1
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earmom HB User
Palatal Myoclonus

There are no recent posts on palatal myoclonus. I would like to provide some information as these posts have helped me a lot. My son was diagnosed with Palatal Myoclonus 4 years ago after ear tube surgery. We have tried 6 drugs, seen multiple top neurologists and ENTs. Our ENT diagnosed the condition with my help. My child was too young to explain his issues, but I heard the clicking after his surgery to remove his tube. The hole in his ear drum allowed me to hear the clicking across the room. My son also has motor tics. Tics are different from palatal myoclonus. We saw a top doc for tics and he conferred with other top docs in the country and none had ever seen palatal myoclonus as a tic. Tic medications do not help it. Klonapin is the only medication that has been sedating enough to help a little, but it is not practical to be on it during the school day as the side effects are loss of balance and extreme fatigue. Risperdol did help reduce the number of clicks per minute but we "lost my son" on that drug, so we stopped it. My son can experience over 100 clicks per minute in each ear and they are not in sync. In addition, on some days he has extreme ear pain symptomatic of Eustchian tube dysfunction (which I learned about from reading posts). We did find a woman who was cured of palatal myoclonus through acupuncture. We did visit that particular acupuncturist and my son was not cured after 1 week of treatment. We are seeking acupuncture treatment locally now. The woman who was cured also found research about a girl who was cured in Turkey using radio frequency ablation. (google Turkey and palatal myoclonus). We have asked out ENT if he could get that research and try it on our son. This is a dibilitating disorder that makes it impossible for my son to function in the world. Don't listen to anyone who says you are the cause or you don't want to be cured (yes, we have heard it all). When our son smiles or laughs, we all smile here too. If you suffer from this disorder, do not give up hope. 2 have been cured, so there is still hope for us all.

 
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Old 03-20-2013, 08:33 AM   #2
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earmom HB User
Re: Palatal Myoclonus

I am updating since my last post in case new people come to this site. We tried Botox and for my son it did not work as planned. We tried 2x. The first time at a dose of 10 CC did nothing. The 2nd time we used 22.5 CC. The Botox was injected directly into the roof of the soft palate only on 1 side to reduce side effects (it was done while he was under anesthesia). 5 days after the Botox his one ear did stop clicking. It would occasionally pop which was very painful. He did have trouble talking and drinking but that subsided after about a week. The silence in the one ear lasted about 6 weeks. In the interim, the pain in his ear still existed and he started getting myoclonus jerks in his throat. It was not a good experience for us, but we have spoken to a few other people who it has worked for. Everyone is different and it is worth a try.

We did try something new in March 2013 with the best results to date. We saw a DR. John Lieurance who did FCR, functional cranial release. We watched the clicks slow and stop while doing a neurological exercise after the FCR. AMAZING. a week and a 1/2 later, my son is only clicking when he swallows, yawns or sneezes. His pain still comes and goes, but this is a miracle for sure. We are now on the right path. I wanted to share our success.

Last edited by Administrator; 03-20-2013 at 01:05 PM.

 
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Old 10-13-2013, 08:09 PM   #3
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Re: Palatal Myoclonus

Earmom, could you give an update on your son? Do you feel the FCR was effective or is the clicking back? Thank you for telling your experience.

 
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