Mitochondrial Myopathy

I just want to know if anyone else out there has mitochondrial myopathy.  I feel like everyone is so different and I would just like to find someone who has something closer to what my 6 year old daughter has.

cellolover's picture

cellolover

04/29/2009

Would you be willing to list your daughter's symptoms? I think that my mito would be classified under mitochondrial myopathy, but I think it's still possible I have different symptoms than your daughter has or will ever have. Hopefully even if you can't find an exact match on here you can find others with similar issues who can sympathize and help.
Adairfamily5's picture

Adairfamily5

04/29/2009

Her pathology indicates she has significant reductions in complexes I-III and II-III as well as complex II. She has generalized skeletal muscle weakness and fatigue. It started most noticeably at age 3 when she fell ALL the time, her knees stayed bloody and callused. She had difficulty climbing stairs. She could not run without falling and basically skipping, hopping and all that was out as well. By age 4 they said she had a mitochondrial myopathy and called classified it under muscular dystrophy. As far as "indivisible" goes if you saw her you wouldn't notice anything unless you saw her run or climb. She has always been small and I have been told this is typical of mito "failure to thrive" (I hate that term). She doesn't eat much but always says she's hungry so she definatley "grazes" or snacks all day. She can not walk for any long distances either. There is just never anyone that seems to be like her.
cellolover's picture

cellolover

04/30/2009

I am! I was older (maybe 18?) when I started having those problems, but when you were describing the muscle problems I felt like you were talking about me. My doctor told me that my mito is under muscular dystrophy but I have just kind of figured out on my own that that probably also means it's mitochondrial myopathy. I am slowly figuring out all sorts of things that really help deal with the muscle weakness and fatigue. You guys probably do as well. You are not alone!
khawlah's picture

khawlah

05/02/2009

My son is 2 and would be classified as mitochondrial myopathy. We are still getting all of his testing reconfirmed but after having very severe problems as a newborn and infant he has done very well and looks 'normal' at 2. He is delayed about 6 months in gross motor skills and fatigues easily. He does have a feeding tube b/c he has always had trouble eating enough to grow. When you say that your daughter is small but always says she is hungry and grazes. That is my son. We always fed him 24/7-he ate and ate but did not grow very much. After working with a feeding team I realized that he just never ate enough at any one time and the act of eating is very tiring and uses lots of energy. I am sure your daughter feels hungry but also tires out before she eats enough to sustain much growth. Once my son gets tired he stops even if he is still hungry. In a half and hour he may eat again. I have also noticed that my son takes in plenty of calories at time without a huge growth. Their bodies have trouble producing energy and perhaps use the calories less effiecently that a child without mito. (That is my thought). I have always been told to make sure my son has a high calorie diet b/c his body requires this. My son is younger but sounds much like your daughter. I would be happy to share with you anything I have found to be helpful for my son. Feel free to ask anytime. Kate
Anthonys mom's picture

Anthonys mom

05/05/2009

Hi, My son is also 2 he will be 3 in Aug. He has complex 1 def. also considered Mitochondrial Myopathy. He also has EE which causes lots of vomiting. He fatigues very easily. Eating was very hard for him. Most of the time he would fall asleep eating. Needless to say Failure to thrive. I was feeding him anything and everything just to add extra calories with no luck. Finally we had a feeding tube placed last May and it has been God Sent. He gets Elecare through it. He is back up to the around the 50th percentile and looks great. I truely believe if he is recieving the right nutrition it is easier for him. He is extremely fatigued and sleeps about 12 hours at night and about 7-8 during the day. We have been through many Phisical Therapist and last friday started Hippotherapy. He loved it! We are hoping this will help with his stamina. We also are in the processes of getting a moterized wheelchair. So he can still have independance yet still have energy when there is something he wants to do. We will add her to our daily prayers if you don't mind. Just remember you are never alone and we are all here for you. Sarah
Adairfamily5's picture

Adairfamily5

07/07/2009

Sorry it's been a while I keep so busy. We have had the mitochondrial myopathy diagnosis for a while but just went to a specialist who slapped us with all these overwhelming paperwork and websites and I am so confused. I am printing everything and anything on her condition. We just had genetic testing done and her and I both show a POLG2 gene mutation variant (whatever that means). She looks normal her "invisible disease". I just made a power point for her teachers for next year. She will be in 1st grade. I am so worried at school getting harder from all the reading I have done. She doesn't eat much at all. She is 6 and about 37 pounds. She has always been that way and now that tagged her as "failure to thrive". I hate that phrase, it sounds like no one cares. She is getting ready to have an extra tooth pulled that is sideways in her maxillae and I am worried about sedation but it will prevent future problems if we remove it now. Everything I read says its progressive but can it stay the way it is now....stable...or am I just waiting. A question I have for the doctor next visit. If you know anything let me know.