Guest guest Posted March 20, 2005 Report Share Posted March 20, 2005 Hi , Thanks for the info. Does Liam have a feeding tube? I am havintg a tough time getting it to go through the tube. It does not disolve very well. Any suggestions? When you listed Liams health/physical concerns you wrote undescended testicles. Wyatt has the same problem. Another family that I know of that has complex I also has that problem. And I know of a boy who has leighs disease that also has that problem. I wonder if it has ever been looked into and why is it common. Well I don't know how common it is because I haven't polled the group, but I do find it interesting. They haven't done anything about Wyatt's and we have known since he was less than a year. Did they do anything for Liam? Geri-Anne and Wyatt, Complex I caringbridge.org/mn/wyattc > > > > Anyone one on either of these seizure meds and if so what has been > > your experience? We are on lamictal and keppra right now with no > > success. We may add zonisamide tomorrow. I do know that it can > cause > > acidiosis but we are left with very little to try. Any suggestions, > > comments would be greatly appreciated. > > > > Thanks > > > > Geri-Anne and Wyatt, complex I > > caringbridge.org/mn/wyattc Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2005 Report Share Posted March 23, 2005 Hi Gerri-Anne, Liam can eat pureed food and he's apparently growing enough not to need extra nutrition thru a feeding tube. We empty the capsule contents into a small cup with a bit of milk and then get him to swallow it. It doesn't really dissolve well, that's true. Maybe others on the list can help with the tube. I sure wish the medication came in liquid form...but of course it's not approved in US for pediatric use, so the pharmaceutical company won't make it that way (or at least sell it that way in US). I am sure others on this list can help you with the tube. Yes, Liam had two surgeries to bring the testes down..they were in his abdomen and also were underdeveloped. Surgeon couldn't get them all the way down into the scrotum. I hear that is odd for any kid with undescended testes. I don't know if it's common for mito, but it does appear to be common (or less rare..however you want to look at it) for boys of all types of genetic defects. At any rate, our urologist told us if they didn't descend on their own by the time he was a year old, they would need to be surgically handled. His view is that it is dangerous to leave them in the abdomen because if they do develop cancer (and they are at a higher risk), then they also are harder to detect the cancer. I think also for kids without problems, this is dangerous because the body heat will affect fertility. thanks, Mama to Seamas, 10 and Liam, 4 - myoclonic seizures, global dev. delay, short stature, undescended testes - possible mito?? - no dx. > > > > > > Anyone one on either of these seizure meds and if so what has been > > > your experience? We are on lamictal and keppra right now with no > > > success. We may add zonisamide tomorrow. I do know that it can > > cause > > > acidiosis but we are left with very little to try. Any suggestions, > > > comments would be greatly appreciated. > > > > > > Thanks > > > > > > Geri-Anne and Wyatt, complex I > > > caringbridge.org/mn/wyattc Quote Link to comment Share on other sites More sharing options...
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