Guest guest Posted May 19, 2004 Report Share Posted May 19, 2004 Thanks for all your responses to my posts and questions. I have read how responsive some of your kiddos are to the " cocktails " and we are asking our ped. if we can try some of the vitamins and enzymes, just in case. Our neuro is out until Thurs, but talked to his associate and she gave us a little more info. She said these results were very good news, but they don't rule out mito. She said they do rule out some other severe stuff though.She talked about a muscle biopsy and also said if we were her patients, she would send us back to the geneticist for more genetic and metabolic testing. Our neuro wnts us to wait until next month to see him and talk about the next step, but I know how important a month can be if it is mito. It could mean a world of difference. Caden sounds like so many of your kiddos that I still lean towards mito, but I guess there are lots of other things out there that present the same symptoms. We live in Texas. I know someone told me that there were only 3 places to do the fresh biopsy: Cleveland, the Mayo Clinic, and Atlanta. Are these the ONLY places? I guess I am hoping for somewhere closer to TX. Vicki, , and Caden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2004 Report Share Posted May 25, 2004 I know someone told me that there were only 3 places to do the fresh biopsy: Cleveland, the Mayo Clinic, and Atlanta. Are these the ONLY places? I guess I am hoping for somewhere closer to TX. Mayo doesn't do them. Somewhere is Cali does but I am not sure where. Atlanta will be closest but you can usually fly free or cheap given the reason. deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 3 with very very mild Cerebral Palsy.www.HeartLiftersGallery.comwww.LifeofLoveProject.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2004 Report Share Posted May 25, 2004 ours biopsy was fresh and we are in san , Texas. Heidi Payton mommy to: Wayne (4) healthy, my soccer player! Adeline Maekenna (2 1/2) Mitochondrial Myopathy non-specific, epilepsy (myoclonic and grand mal seizures), autonomic neuropathy, sensory integration dysfunction, 100% g-tube fed (due to silent aspiration), reflux, asthma, allergies, hypertonia, developmental and speech delay and our most precious angel who teaches us what life is really about! Logan (18 months) healthy, my little flirt! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2004 Report Share Posted May 25, 2004 Hi Vicki What part of Texas do you live in? See Ya mom to Colby,14,COXIV,LCHAD,ACC,ADHD ,hypothroidism and osteopenia. Chad, 16, healthy, Caleb, 11, also healthy> >Reply-To: Mito >To: Mito >Subject: Thanks! >Date: Wed, 19 May 2004 14:58:30 -0000 > Thanks for all your responses to my posts and questions. I have read how responsive some of your kiddos are to the " cocktails " and we are asking our ped. if we can try some of the vitamins and enzymes, just in case. Our neuro is out until Thurs, but talked to his associate and she gave us a little more info. She said these results were very good news, but they don't rule out mito. She said they do rule out some other severe stuff though.She talked about a muscle biopsy and also said if we were her patients, she would send us back to the geneticist for more genetic and metabolic testing. Our neuro wnts us to wait until next month to see him and talk about the next step, but I know how important a month can be if it is mito. It could mean a world of difference. Caden sounds like so many of your kiddos that I still lean towards mito, but I guess there are lots of other things out there that present the same symptoms. We live in Texas. I know someone told me that there were only 3 places to do the fresh biopsy: Cleveland, the Mayo Clinic, and Atlanta. Are these the ONLY places? I guess I am hoping for somewhere closer to TX. Vicki, , and Caden Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2004 Report Share Posted May 26, 2004 We live in San , Texas. Where about do you all live? Heidi Payton mommy to: Wayne (4) healthy, my soccer player! Adeline Maekenna (2 1/2) Mitochondrial Myopathy non-specific, epilepsy (myoclonic and grand mal seizures), autonomic neuropathy, sensory integration dysfunction, 100% g-tube fed (due to silent aspiration), reflux, asthma, allergies, hypertonia, developmental and speech delay and our most precious angel who teaches us what life is really about! Logan (18 months) healthy, my little flirt! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2004 Report Share Posted May 26, 2004 We are from San Angelo, TX. Did you have the fresh biopsy done at Methodist Children's Hospital? Our neurologist is from San ....Dr. Jerry Tomasovic. Ever heard of him? We have seen him in San and we will see him again in June when he comes to San Angelo. Caden had his MRI/MRS done at Methodist Children's Hospital there in San . Any info you could give me would help! Vicki, , Caden ---------- Original Message ---------------------------------- Reply-To: Mito Date: Wed, 26 May 2004 17:34:36 -0400 >---------- Original Message ---------------------------------- >We live in San , Texas. Where about do you all live? > >Heidi Payton mommy to: > Wayne (4) healthy, my soccer player! >Adeline Maekenna (2 1/2) Mitochondrial Myopathy non-specific, >epilepsy (myoclonic and grand mal seizures), autonomic neuropathy, >sensory integration dysfunction, 100% g-tube fed (due to silent aspiration), >reflux, asthma, allergies, hypertonia, developmental and speech delay >and our most precious angel who teaches us what life is really about! >Logan (18 months) healthy, my little flirt! > > > Quote Link to comment Share on other sites More sharing options...
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