Guest guest Posted May 10, 2004 Report Share Posted May 10, 2004 just a question, if your child has been diagnosed with mito...what would an MRI show, my daughter has had many...more to keep an eye on her spine(due to the CP)they just did an MRI last week, this is when the doc started talking to me about looking into seeing if she had mito...what exactly would an MRI show...perhaps when i meet agian with the neurosurgeon i can suggest or ask or something...we are searching for answers...i feel like im swimming in a great big sea all alone and there seems to be no answers , no anything one can put there finger on...it is all so frustrating and to see thinkgs keep popping up or showing themselves makes it harder and for my daughter she cannot understand why this stuff is happening and I have no explanations for her. The docs almost seem stumped and they keep telling me this is not common or this is not usual for kids with CP. I know its not. sorry for rambling...i guess im reading and seeing some of my daughter in these posts and wondering wondering...what if...is it this...this all makes sence...wow...overload Rosemarie...mom to the gang and keeper of the zoo Mathieu 15, Brittny 14, n 13 , Thalia 11 and last but not least Stormy 5 Many people will walk in and out of your life, but only true friends will leave footprints in your heart. ( \ / ) ( \ ( ) / ) ( \ / ) ( __ / \ __ ) / \ /____ \ _________________________________________________________________ Add photos to your e-mail with MSN Premium. Get 2 months FREE* http://join.msn.com/?pgmarket=en-ca&page=byoa/prem&xAPID=1994&DI=1034&SU=http://\ hotmail.com/enca&HL=Market_MSNIS_Taglines Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2004 Report Share Posted May 10, 2004 I can only tell you what my experience was as far as theMRI went in diagnosing mito. I do not think that is exclusive but I will tell you what I know. My daughter, Samya, went all 8 years of her life showing no blood work that even indicated mito. In fact, she had a normal MRI (which happens a lot) a year before she died. When she got very sick, and was intubated in ICU , the only indication of mito were here MRI results. The pediatric neuro radiologist saw “ slight lactic acid lesions in the basal ganglia indicated a possible mitochondrial disease”. These results I will always remember. Finally, they found the mystery disease when she was dying, and died about 2 weeks later. The results were very minor and difficult to read unless by an experienced radiologist and yet her symptoms were very severe at that stage. My other daughter had ataxia and an MRI showed the same thing in the basal ganglia. Leanna also had an MRS, which measure chemicals in the brain (I believe to be more sensitive than MRI in some ways) and that showed elevated lactic acid typical in mito disease, consistant with her sister’s findings the year before. Leanna’s was pretty sick but not as sick as Samya was at the time of her MRI. I hope that helps somewhat. Good luck, Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease. Samya's Memorial Site: www.Samya.org Email: Suhad1970@... Alt Email: Suhad@... AiM Chat: Suhad1970 From: Rosemarie Havens Sent: Monday, May 10, 2004 4:35 AM To: Mito Subject: mri's just a question, if your child has been diagnosed with mito...what would an MRI show, my daughter has had many...more to keep an eye on her spine(due to the CP)they just did an MRI last week, this is when the doc started talking to me about looking into seeing if she had mito...what exactly would an MRI show...perhaps when i meet agian with the neurosurgeon i can suggest or ask or something...we are searching for answers...i feel like im swimming in a great big sea all alone and there seems to be no answers , no anything one can put there finger on...it is all so frustrating and to see thinkgs keep popping up or showing themselves makes it harder and for my daughter she cannot understand why this stuff is happening and I have no explanations for her. The docs almost seem stumped and they keep telling me this is not common or this is not usual for kids with CP. I know its not. sorry for rambling...i guess im reading and seeing some of my daughter in these posts and wondering wondering...what if...is it this...this all makes sence...wow...overload Rosemarie...mom to the gang and keeper of the zoo Mathieu 15, Brittny 14, n 13 , Thalia 11 and last but not least Stormy 5 Many people will walk in and out of your life, but only true friends will leave footprints in your heart. ( \ / ) ( \ ( ) / ) ( \ / ) ( __ / \ __ ) / \ /____ \ _________________________________________________________________ Add photos to your e-mail with MSN Premium. Get 2 months FREE* http://join.msn.com/?pgmarket=en-ca & page=byoa/prem & xAPID=1994 & DI=1034 & SU=http://hotmail.com/enca & HL=Market_MSNIS_Taglines Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2004 Report Share Posted May 10, 2004 Ask the doctor if they will be doing and MRI/MRS. The MRS will read levels of lactic acid in the brain which can indicate that there may be a mito problem. You will need a very experienced technician and neuroradiologist to read the MRI/MRS. If you have a neurologist they can help you set this all up. We just had this done at our local Children's Hospital and it went really smoothly. Geri-Anne and Wyatt, complex I > just a question, if your child has been diagnosed with mito...what would an > MRI show, my daughter has had many...more to keep an eye on her spine(due to > the CP)they just did an MRI last week, this is when the doc started talking > to me about looking into seeing if she had mito...what exactly would an MRI > show...perhaps when i meet agian with the neurosurgeon i can suggest or ask > or something...we are searching for answers...i feel like im swimming in a > great big sea all alone and there seems to be no answers , no anything one > can put there finger on...it is all so frustrating and to see thinkgs keep > popping up or showing themselves makes it harder and for my daughter she > cannot understand why this stuff is happening and I have no explanations for > her. The docs almost seem stumped and they keep telling me this is not > common or this is not usual for kids with CP. I know its not. > sorry for rambling...i guess im reading and seeing some of my daughter in > these posts and wondering wondering...what if...is it this...this all makes > sence...wow...overload > > Rosemarie...mom to the gang and keeper of the zoo > Mathieu 15, Brittny 14, n 13 , Thalia 11 and last but not least Stormy > 5 > > > Many people will walk in and out of your life, but only true friends will > leave footprints in your heart. > ( \ / ) > ( \ ( ) / ) > ( \ / ) > ( __ / \ __ ) > / \ > /____ \ > > _________________________________________________________________ > Add photos to your e-mail with MSN Premium. Get 2 months FREE* > http://join.msn.com/?pgmarket=en- ca&page=byoa/prem&xAPID=1994&DI=1034&SU=http://hotmail.com/enca&HL=Ma rket_MSNIS_Taglines Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2004 Report Share Posted May 11, 2004 Before Cole was diagnosed he had 2 MRI's which were " normal " (these were at a local hospital). The boys just had scans at Mayo on Friday and the neuro their said they have some kind of advanced technology that shows chemical uptake (like creatine uptake) and will be able to see if they are being treated aggressively enough---they are looking for " white matter " damage in particular. My boys have come out of crisis with dystonia each time; this last time the dystonia (finger problems/toe-walking) has lingered. I think that she said the dystonia results from the white matter damage (I have not a clue what " white matter " is). Kris > just a question, if your child has been diagnosed with mito...what would an > MRI show, my daughter has had many...more to keep an eye on her spine(due to > the CP)they just did an MRI last week, this is when the doc started talking > to me about looking into seeing if she had mito...what exactly would an MRI > show...perhaps when i meet agian with the neurosurgeon i can suggest or ask > or something...we are searching for answers...i feel like im swimming in a > great big sea all alone and there seems to be no answers , no anything one > can put there finger on...it is all so frustrating and to see thinkgs keep > popping up or showing themselves makes it harder and for my daughter she > cannot understand why this stuff is happening and I have no explanations for > her. The docs almost seem stumped and they keep telling me this is not > common or this is not usual for kids with CP. I know its not. > sorry for rambling...i guess im reading and seeing some of my daughter in > these posts and wondering wondering...what if...is it this...this all makes > sence...wow...overload > > Rosemarie...mom to the gang and keeper of the zoo > Mathieu 15, Brittny 14, n 13 , Thalia 11 and last but not least Stormy > 5 > > > Many people will walk in and out of your life, but only true friends will > leave footprints in your heart. > ( \ / ) > ( \ ( ) / ) > ( \ / ) > ( __ / \ __ ) > / \ > /____ \ > > _________________________________________________________________ > Add photos to your e-mail with MSN Premium. Get 2 months FREE* > http://join.msn.com/?pgmarket=en- ca&page=byoa/prem&xAPID=1994&DI=1034&SU=http://hotmail.com/enca&HL=Mar ket_MSNIS_Taglines Quote Link to comment Share on other sites More sharing options...
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