Discussing mitochondrial myopathies
Leanne's Page
Profile Information
- Hometown:
- Denton, Texas
- About Me:
- Mom of fraternal twins (currently 4). Practicing Family Therapist
One of my twins started having what we now know is Cyclical Vomiting Syndrome before two years of age. He also has migraines and compains of pain and weakness upon exertion. He has regular "episodes" at least once a month and battles weakness, pain and an overall lack of energy a majority of the time. We feared blood sugar problems but now believe because of family history and symptoms that he has a mitochondrial disorder.
- Do you go to a Genetics Clinic?
- Not at this time
- Are you dealing with a mitochondrial disorder?
- Yes
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So that is the my online focus right now. Dr. Boles told me that the patients that can talk ( Zach is not always verbal) tell him the leg pain is excruciating. Zachary takes methadone every four hours and oxycodone for breakthrough pain. When Zach is in pain he has self injurious behaviors. You can see some RAW video on that on my You Tube channel www.youtube.com/user/jippyjabber The video with the big red striped present is one I made set to music. It's sad but loving and it covers many areas of his journey. That video made be on this site now that I think about it. I know what you mean about having a kindred spirit on this journey! I am so glad to have met you. When I travel I use ( not so much anymore) to put something weighted on his tummy. I put on noise canceling headphones and anti glare sun glasses. He has been through video player, ipod video, PSP, Now the I Phone and I tell you at this age it's awesome. I have audio books and movies ect. all in one place! These kids are not cheap! I still have a crap getto phone! Let me see if I can help you find someone to take your pain issues seriously! I'll ask Dr. Joseph if he knows anyone in Texas.
Hang in there!
Jen
We use cuties when in season. Gummy life savers. ( too many red ones but if it's all he'll take I let him have it) Dr. Boles recommends soda like mountain dew or jolt but soda is harsh on Zach's teeth. I mean fast sugar, when I say good sugar. I find a small amount of sugar, apple slices, slice of pumkin bread, with in each the three hour period helps very much. They use D10 in his IV's when he needs it. For leg pain and nerve pain we use Lyrica and amitriptyln. You have to move to make new mytochondria even if it's not fully functioning you need to make new ones. I have a small trampoline with a bar in Zach's room. You can google rebounding and find info on moving all of the cells. Even if Zach just stands on it while watching a movie it relieves stress on the joints. As you know do not over do it! In good times Zach goes to a Gym with a private trainer. We haven't lasted too long there. Communting can be hell on these kids. You might consider digestive enzymes if you are getting tummy trouble traveling. Zach can't take it. Also, be ware of the glare when you travel. Yikes! Bad time to try and sell a house. Good luck to you.
Jen
Best to you!