Re: New-have been lurking & have lots of ?s

[Guest guest]

Kim,

It sounds to me like your gut is telling you someting, and that you should listen to that mother's instinct. i hate it when doctors poo-poo us and dismiss our concerns and fears. you have reason to be concerned and proceed with finding answers to those questions in your mind. if it comes to nothing, then you will have that peace of mind and Madi will have a small scar on her thigh. if you are right, then you will have a much better idea of how to give your daughter the best possible treatment you can. listen to your docs, but above all listen to your gut.

hope this helps

ruth

mom to Mitch (nearly 9) and Lexi (6 next week) both mito affected and MY TREASURES

[Guest guest]

I know it is a tough decision to go through with surgery for your child. I also understand that every case is different, but here is our experience. (I will keep it very short, if you want the whole story just ask.) Our daughter Grace was a pretty sick baby. Most of her labs were abnormal, but not too bad (except for liver, really bad). Even before mito was suggested I remember asking her GI "do you think she will be O.K?" Her response was "I don't know." Eventually she was met up with Dr. Cohen at Cleveland Clinic and he recommended a muscle and liver biopsy. Although we were reluctant, she had already had two punch liver biopsies to show damage but nothing specific, we decided to go through it. When her biopsies came back, both were positive for mito (although no known type). She was started on the cocktail along with some other meds specific for her needs. Today she is a relatively normal toddler. She runs, tries to jump, laughs, and picks on her older siblings. She still cannot talk, but is learning to use sign. Best of all, her bloodwork is coming back completely normal. We at one time thought almost for sure that she would need a transplant at a young age, now it is pretty unlikely she will ever need one. I just recently asked Dr. Cohen the same question I asked her GI about a year ago. I got the response "I think she is going to be just fine." Of course she will always take a lot of medication, and have to be very careful of illnesses and making sure her diet is good. But she will most likely live a normal life. This is all because of fast acting and getting the diagnosis before it was too late. I truly believe that if we waited longer, I may not have had my Grace for much longer. I know this is tough, but use your instinct, mom knows best.