Hi Pat. I noticed your name from the myopathy group. I am Amanda, mom to Jacob. He has x-linked mtm. I am glad you found us here. Although this group...
Hi Pat -- Just out of curiosity -- are you male or female? I am a 40+ female who was diagnosed with mtm 3 years ago. A life time of weakness (always chalked...
It is nice to see that there is a group for ppl with mtm. I found out I had md in 1990 and was not dx'd til 98 with mtm. My son had two biopsies and I had one....
Hi Connie! I am so sorry - this is the third time I've tried to reply to your email, and each time something goes wrong and my message is sent back - arrggh!!...
Hi all, Has anyones boy's had problems with Kidney stones? Hypercalcemia, hypercalcuria? Jack, has all of the above... and he has a 3mm Kidney stone. He has...
Kristin, Hello, my name is Connie. I have two sons born with XMTM. I found your posting very interesting- please tell me more about your brother and...
Hi Kristin. I am really glad to hear your story. I know that there are a lot of sad stories regarding MTM. And then there are boys like Sebastian, and boys...
Hello! I have not posted to this board before, but I have been reading the emails since my son was born on March 26th of this year. Sebastian was born floppy...
Our son wasnt real floppy but was very slow at walking and etc. He has Myopathy and is 7,he also is very smart,he has a wheelchair,leg braces and a walker,he...
Hello..We are so glad you found us. I have determined that the best way for me to deal with day-to-day issues with my son is to have contact with other...
Hello everyone! Glad there is this website. My son Patrick, was born extremely floppy and low-toned. He spent 17 days in the Pediatric ICU where we were told...
... Hi, not sure yet if my son has myotubular myopathy, but he is Trached. He is 2 yrs. and he also had alot! of secretions, we were suctioning him at least 3...
Here is the proper link. http://www.mdausa.org/publications/Quest/q61coq10.html Jess ... Do you Yahoo!? Free online calendar with sync to Outlook(TM)....
Jack was on Carnitine for a month when he was 8 weeks to 12 weeks old... we saw a great improvement... however his carntine levels were perfect before they...
Hi, Yes We have been using Carnitor (prescription brand) with Jay Jay for 3 years. He also gets CO-Q 10. I believe they help him (they are protein absorbers)...
I have given my son Robert supplements of Carnitor, a liquid pharmaceutical form of carnitine. I firmly believe it helped my son. We had to insist to get the...
Hello all. I have been doing some research on the use of carnitine supplements. I am curious if any of you have tried this with your sons and what the...
Hi everone, My partner and I have put up a website on MTM. We have included discussions boards and links to articles on MTM. We are trying to make it a network...
Hi Jess, My son has a trach and has been on a vent for 5 1/2 years. During the day (when he is not sick) he is off the vent and he has a Passey Muir valve(it...
Hi, Jess. In response to your email, I must say that I have never heard of a trach causing anyone to become vent dependent. Lots of people have trachs and are...
Hi, Jess. In response to your email, I must say that I have never heard of a trach causing anyone to become vent dependent. Lots of people have trachs and are...
Hi Everyone! I hope all is well with your boys, yourself and your families. Jack is 8 months old and is CPAP dependant. Last week Jack was trail of the CPAP...
It's been awhile since I have wrote, because I just recently got my own computer. My son Nicholas is doing very well. He is growing fast. He is 15 months old...
Hi..my son Jacob has xlmtm and is 15 months old. He has a lot of trach secretions and we have succeeded at "drying" some of it up with Robinul, but each day...
Jessica, Hello! My name is Connie. I have a son, Benjamin, who was born with MTMX. He is 7 months old, trached, and has been on room air since he was born,...
my son jacob has xlmtm. he was born feb 3, 2002. he is trached and has a mickey button. i am interested in chatting with someone who also has a son with...
Hi Jess and Jack, Breathing with a trach is much easier because you bypass the mouth and nose area which are very complicated parts of our bodies. However,...
Hi Bob, Wow your jay jay's dad. i have your story in a folder at home of your precious son. i didnt think he was 5 almost six. sounds like he is doing well. as...
