Mitochondrial Diseases Support Group
Mitochondrial diseases comprise those disorders that affect the function of the mitochondria and/or are due to mitochondrial DNA. The effects of mitochondrial disease can be quite varied. Since the distribution of defective DNA may vary from organ to organ within the body, the mutation that in one person may cause liver disease might in another person cause a brain...
I have a son who is 8 he has alot of problems delayed,bad balance, speech problems weak muscles ect he has been tested for mitochondrial diease but its come back negative his consultent thinks he still has mitochondrial but a very rare case if it.its spreading fast on his brain he has central sleep apnea to i am so scared.. is ther anyone else out ther going through the same?
When I was 4 days old I was diagnosed with a mitochondrial disorder which when I don't eat I get hypoglycemic Mitochondrial and getting Hypoglycemic is a type of metabolic disorder which is the cause of my epilepsy, because of this I was developmentally delayed by 2 years I also have an auditory and visual processing disorder as because I am developmentally behind by 2 years but not in everything anymore I'm more academically delayed now but when I was younger I was delayed almost in everything school, I had bad balance as well, I had to go to speech therapy not necessarily for having speaking problems but for some other stuff, I also had to do OT (Occupational Therapy) and I had to do OT and speech until I was finished High School I'm 19 right now and have not had a seizure in 2 years although I'm still on medication for it, I don't take Speech or OT anymore, because of the developmental delay I look a lot younger than my actaul age a lot of people think I'm 12 or 13 when they first see me, I still have a delay in math stuff that people my age usually have already learned in high school I'm still learning even though I'm doing college math now I have a math delay and but I got a lot of help and that's really what helps meet all the milestones is for each kid to have what meets their needs and tons of support like when I was younger I would be seizing a lot of the time. I also have Tic disorder, Restless Leg syndrome and Anxiety all which plays into everything as I'm getting to my point each person is different with mitochondrial stuff, Often Mitochondrial disorder can make you feel really weak and sometimes even be hard to get out of bed in the morning as obviously i am not a doctor, for the time being while you guys are trying to figure this out if he needs more energy I would try protein like peanuts if not allergic or anything with protein in it I don't know if your son get's low blood sugar if that's case that's something you could try as I know this is probably a scary time for you as it was for my parents when I was younger, I hope you guys get through this and your son gets well and I hope this message helped a little bit. there are all types of different Metabolic Disorder in which my mom told me Mitochondrial is one of them, I still struggle with my metabolic disorder if I get low on blood sugar i have to eat protein and if I don't i get really shaky, pale, low energy and can't focus on anything and possibly go into a seizure which is why I watch out for that and make sure I eat plenty so that doesn't happen, but hopefully the doctors can figure out what's happening with your son my prayers are with you and I hope everything turns out well for you guys. I hope this helped.