Re: CARRIE Diagnosis-Answers?-Better 2004

[Guest guest]

We are hoping a transplant will not be necessary, but it is always a possibility. From what Dr. Cohen told us, at CCF, they would have no problems transplanting as long as she is otherwise in good condition. He told me that even with the diagnosis of mito, if her outlook is positive they will do it. Luckily all of her specialists are also at the Cleveland Clinic, so everybody is "up" on her treatment plans ect. As far as the mito goes, her main problem is her liver. She has some damage done, but as of now it really is not too bad, but she is only 18 months old. Her GI has started her on Actigal to help thin out the bile in her liver, hoping it will slow down the damage. Dr. Cohen believes that Carnitor is also helping. For the most part the other organs are fine. As with all the mito kids, she has an echo done every year and they have been watching her kidneys pretty closely. Other than that she has the other "normal" symptoms of mito (unstable blood sugars, reflux, asthma, possible seizures, and I'm sure I missed some). Hope some of this will help you.

[Guest guest]

:have you found a center willing to transplant with her diagnosis? Does she have any involvement other than her liver? We pursued multi organ tx for my son Sam a few years ago but every center we went to said that they would not do it given his diagnosis. In his case he is multi organ affected and does not tolerate the shortest of surgeries so I do believe it would have been the wrong choice for him. However, I know of another young woman with the mito dx who did have a liver tx - while her disease is slowly progressive - the transplant has given her at least 5 if not 6 years now that she would not have had and I expect her to continue to have a good life. Annewww.caringbridge.org/wi/zachsam Re: Diagnosis-Answers?-Better 2004I understand your frustration very well. My daughter Grace is also one of her own. I have been told by Cohen that we will probably never fully understand her problems exactly. He also told us that we cannot predict her outcome. He does not think her case is fatal, with treatment, but as far as liver transplants, diminishing muscle ability ect. we will only know when it happens. I wish I could know what to expect, but I am confident she is in good hands