Re: Re: Please send prayers To Darla

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Our doc said he has mito. He also said that even with all his symptoms pointed towards mito. The one thing I know is dr.'s don't like to be wrong. has the COX dificiency for sure. There was some other rare group of mitochondria that containedperipheral circular arrayswith central loss of cristae. Those were the two main things he based his diagnosis on. He told me that why it doen't fit any specific disorder is that in some does't meet the right criteria or mutations are or aren't there etc....

I don't know if this helps. Although today I was trying to decide if I liked knowing or not. The good news was is that he told me that it is a good sign that is 7 and here. I can't ask for more. Darla Klein wrote:

I am sorry your child has Mito but totally understand the relief in at least knowing what is going on. One thing I often wonder is how or why docs say it is Mito if a type cannot be found. In my girls the biopsies pointed towards Mitochondrial problems, but the docs still say we "think" it is Mito rather than saying it IS Mito, just an unspecified form. Any help with this issue is appreciated. :)See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org (a photo look into Mito)Darla: mommy toAsenath (5) Probable Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomia, SID, global delays, cyclic vomiting, bladder issues, some wheelchair use, eye issues, gastric emptying issues...Zipporrah (18 months) Probable Mito, strokes, neuro-motor planning,

SID, GERD, dysphasia, G-tube fed, speech delays, extreme fatigue, aberrant subclavian artery, disautonomia, hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency...Luke (16) migraines, sensory issues, & some evidence of SLE's...Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), Marquis (3)Joey (16 months) with hydrocephalus, dysgenesis of the corpus callosum, encephalomalacia & leukomalacia, G-tube, GERD, immobile, severe dev. delays, left hemiplegia (arm)... (16 months) SID, dev. delays, right hemiparesis issues... Re: Re: Please send prayers To donna and all> Well, it's official, he has Mito!!!!! I have felt it in my heart that > this is what he has but when you actually hear it

and see it on paper my > heart breaks. I had to laugh though when he said it's unspecified mito, > here we have been looking for a diagnosis for 5 years and it is not > specific. He did mention COX deficiency. I am supposed to start him on a > cocktail. I have a question though has anyone gotten medicaid to pay for > their cocktail supplements? I am not sure of how to afford this. Thank > you for all your prayers. It has kept me strong all day.>> I am so grateful to finally know SOMETHING.>> Bless you all,>> >> craigsstory wrote:>> .>> So sorry to hear about 's accident! I must have missed the> post earlier. I have been praying for peace for you.>> Donna H. (Craig's Mom)>> > >> > As I have been sharing with you all, goes to see Dr. Saneto> > tomorrow at 2:00. I am glad to see that he is the guest speaker> > tomorrow night on the chat. I was also glad to see what was> written> > about him. We have never seen him before. Our normal neurologist> is> > referring us to him. I always get a little nervous meeting new> > doctor's.> > Please pray that our muscle biopsy results are all in. I know> that> > alot of them are in I just haven't been told yet.> > I should be able to sleep tonight and not let the anxiety get to> meas> > and I spent several hours in the ER tonight. He loves to> > climb and tonight he was on a stump at a friends house and well,> he> > has 4 stitches in his scrotum! He always waits for

me to turn my> > back and does what he was told not to do!! Typical boy huh!?!> >> > You are allin my prayers and thank you all for the support.> >> > God Bless,> >> > >>>>>> Please contact mito-owner with any problems or questions.>>>> --------------------------------->