Re: memphis mito patients--sydnie

[Guest guest]

Hey there

Our son died in May of 2003, but we used several doctors...some good and some awful. I would NOT go to the metabolic doc here...Jewel Ward...she has only had a few mito pts and doesn't ever believe a diagnosis unless it fits what she learned in medical school 30 years ago. All of my kids are adopted and unrelated, but we started seeing another geneticist in the practice b/c my other child is suspected to have neurofibromatosis...oh great, another rare disease. However, Enika Pivnick is an expert on that so I lucked up...she is fabulous!!!! She has asked me many questions about mito and I even loaned her my UMDF folder, 's labs and stuff from Shoffner and everything. She really studied them, so I have no problem referring someone to her now.

The GI doc,,, Dr Eshun is really great...his partner is good too...but Eshun actually sees all three of my kids.

Our neuro is on possibly permanent medical leave...his name is Eastmead and he is really the ONLY reason we found a diagnosis...he is just fab! They have a new partner and I am not too sure about her yet. Eastmead also sees all three. There is a doc we have seen on rounds wiht the group while we were inpatient, named Natarajan and he is pretty good...as far as believing in mito, I am not sure how he thinks. Seems like many docs here were in the dark ages about mito...thinking it only struck newborns who didn't make it through the first year.

We went to Boston to see Mark Korson for mito stuff.

The pulmonologist was hardnose...a good doctor but just never understood the needs of mito patients. The endocronologist is just awful...avoid at all costs! I actually thought was going to punch him out! I have still not found a good pediatrician here in town...but I am sure you are just wondering about specialists. Our cardiologist was superb but he was killed in a car accident a few months ago. There is a great eye doc here, named Byrd...she also sees all my kids. We have an ENT but I don't have an opinion about her one way or the other. What else do you want to know...between three special needs kids, we have just about seen them all!

What town are you in? If you do get to memphis, we must get together!

There used to be a good guy at LR childrens but I think he has left now. I know someone in the Ft area...if that helps. They are great...really helped me when we were looking for a diagnosis. They have a child with mito and a leukodystrophy so they know lots of stuff!

deb...mom to three great kids and wife to one amazing guy!http://www.lifeofloveproject.org/http://www.debwells.com/