Parents Group

Comment

Comment by peter t arnold on March 19, 2010 at 11:39am

thank you for the advise.

Comment by StevesDad on March 19, 2010 at 11:20am

Peter - I would recommend you hop over to the Myotonic Dystrophy Foundation community website. It has a lot more activity and a larger audience of people that may be able to help. http://www.myotonic.org

Comment by peter t arnold on March 19, 2010 at 11:13am

hi every one, My wife and two children have just been dianosed with Myotonic Dystrophy and i am having loads of problems with my daughter the eldest she is not gaining any weight and i dont know if this is a part of the condition or not.

Comment by StevesDad on November 5, 2009 at 8:36am

Hi Katerina - I have never heard of Myoclonic before so I don't believe it is the same. From what I just searched on Google, it is when people have twitching or seizures. This is not a common characteristic of Myotonic Dystrophy.

Comment by Katerina J. Person on November 5, 2009 at 8:28am

Hi, I'm new to all of this & I have a question.......my 9-yr. old son has been diagnosed with Myoclonic Dystrophy & I want to know is it the same or similar to Myotonic Dystrophy, what is it exactly, how is it treated, etc. I found this out because I recently had 2 take him 2 Children's Hospital of the Kings Daughters & this terminology was listed under the Diagnosis, along with Developmental Delays.

Comment by Michelle Widener on September 12, 2009 at 7:29pm

I don't know about specifically in Indiana, but I have heard that German and Dutch populations are especially prone to Myotonic Dystrophy.

Comment by Kathie on September 9, 2009 at 8:06am

My two sons, both in their 30s, have been diagnosed with Type 2. We live in southern Indiana. Do you know anything about a high incidence of Type 2 in German populations in Indiana?

Comment by Michelle Widener on July 11, 2009 at 1:04am

Hi, I just joined! I found out about a week ago that my son has 850 repeats. He is about 14 weeks old. I know everyone is different and that repeats don't even necessarily mean anything, but any tips for a newby? Most his problems are feeding and weakness in face, neck, and shoulders.

Michelle

Comment by Deanna Weeks ( Dee) on April 1, 2009 at 8:54pm

Richard, i have coughing issues due to slowly digesting food and extra acid. I found myself waking up at night coughing. Now I use Nexium and the lowered acid seems to prevent the disturbance. Maybe try this? Prilosec works too and can be over the counter. good luck

Comment by Bettie Jean Gross on April 1, 2009 at 1:30pm

Richard, Have you tried a cough assist machine. We use that for our daughters

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