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...
43
dotj67
May 5, 2003 8:45 pm
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...
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Jessica
evilpixiecat
May 10, 2003 10:07 am
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...
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connie guinn
kookla_g
May 11, 2003 4:26 am
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...
46
connie guinn
kookla_g
May 11, 2003 4:28 am
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...
47
robert.shapiro@...
robert_shapiro2
May 12, 2003 1:59 pm
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...
48
evilpixiecat
May 23, 2003 4:00 pm
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...
49
dhahjh
Jun 3, 2003 6:09 pm
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...
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Rob & Helene Gaissert
rhgaissert
Jun 3, 2003 8:23 pm
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...
51
robert.shapiro@...
robert_shapiro2
Jun 3, 2003 8:34 pm
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)...
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evil pixie
evilpixiecat
Jun 4, 2003 7:10 am
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...
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evil pixie
evilpixiecat
Jun 4, 2003 7:15 am
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)....
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pck0501
Jun 5, 2003 1:08 pm
... 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...
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pck0501
Jun 5, 2003 1:08 pm
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...
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dhahjh
Jun 6, 2003 12:51 pm
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...
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Patricia G
itspatricia
Jun 6, 2003 1:00 pm
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...
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kristin cypher
myrkrida
Jun 9, 2003 1:09 pm
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...
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dhahjh
Jun 10, 2003 12:46 am
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...
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evilpixiecat
Jun 30, 2003 2:00 pm
Hi Kristen, I was wondering how your son went with his test, and if you got a diagnosis? I hope all is well with him and your family Take Care Jess...
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connie guinn
kookla_g
Jun 30, 2003 5:14 pm
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...
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evilpixiecat
Jul 13, 2003 7:34 am
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...
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kristin cypher
myrkrida
Jul 13, 2003 6:30 pm
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!!...
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redscootee@...
mrsbnmd
Jul 14, 2003 3:59 pm
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....
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kbrowland2@...
kbrowland2
Jul 14, 2003 4:20 pm
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...
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amanda Hollingsworth
dhahjh
Jul 14, 2003 5:29 pm
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...
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redscootee@...
mrsbnmd
Jul 15, 2003 3:41 am
To KBrowland, Sorry forgot to mention that I am a female. I am a manifesting carrier of mtm. Am glad to see there are some other adults on the list. We have ...
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redscootee@...
mrsbnmd
Jul 15, 2003 3:46 am
Amanda, Nice to see you over here too. I was looking for something at my groups setting when I found this group. Being a manifesting carrier of mtm it will be...
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redscootee@...
mrsbnmd
Jul 15, 2003 3:54 am
Amanda, Hit the send button before I was done answering your email. My son Tim is 28. He is still mobile. He has trouble rising from the floor and going up...
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kbrowland2@...
kbrowland2
Jul 15, 2003 11:42 am
Hi Pat -- I forgot to mention that I'm Kathy!! Sorry about that.... Along with MTM, I have degenerative disk disease as well as was having a problem with...
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redscootee@...
mrsbnmd
Jul 16, 2003 4:12 am
I had open heart surgery when I was 9. I have never excelled at sports and always thought having the heart surgery was why. I was surprised when I found out it...
