Any mito moms? little long

mightmom13

Hi,

Not new to the bump, but new name and new board.

I have a mitochondrial disease; I do not know if it is mtDNA or nuclear DNA.  Under pretty good management now with supplements/diet; however muscular strength and gait is affected. My parents found out when I went from walking to crawling at 18 months - lots of testing from decades ago lead to fatty acid disorder and now I know it is a mito issue. I still can't fast, eat major fats without getting sick, and the gait issues.

My daughter is just now starting to show the exact same thing at the same age - her walking has majorly regressed, same affected side, same stronger side, was recently exposed to weekly fatty meals by a NPC, and had a major illness for almost 3 weeks with lethargy, high temp, vomiting, and obviously long recovery - all manged from home. Her left foot is pronated (sp?) inward, right leg appearing to lift up. I did not say anything to anyone.

She had a speech eval and they noted some of the things I did along with ask un-prompted questions about my history and comments about DD that were dead on and recommended at least a physical therapy eval and ped consult. I did some own research on my own and I think she needs to be tested for mito. I put a call into her ped, voicemail back, will talk on Friday. I also have my own specialists here.

I do not know what I am asking for here, except maybe support, suggestions in the mean time, resources, etc.  

JoJoGee

Hi.  I don't have any experience with mitochondrial disorders, so I can't offer you any advice.  But, I wanted to say welcome.  This is a great group of supportive and knowledgeable people.