Re: Crystal- New to the group and the diagnosis

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We see Dr. Whiteman and absolutely love him! He is at Mayo in Rochester, MINN. He is very smart (actually, Dr. Cohen was trained by Dr. Whiteman) and will bend over backwards for his patients. Many times he calls after hours with important information and will visit us in the hospital or has even ran to another doctor's appointment in the building when we received bad news. He is thorough and looks at the family as a whole rather than just the individual child. He now sees my daughter Asenath, Zipporrah, and myself on a regular basis, but has also seen three of my other children to rule out different issues in them. Mayo isn't that far from Kansas City either. The Mayo clinics/hospitals also have many specialists in the same location so you can deal with all your child/children's issues during the same visit. Feel free to ask more questions if needed. Darla (Des Moines, IA) Re: New to the group and the diagnosis hi and welcome to the group.dr. bruce cohen is at the cleveland clinic (ohio) and is one of the most well known Mito specialists. we live in maryland and see him once a year... a 4 1/2 drive each way, but worth it. i know it would be much longer for you....so hopefully someone who lives closer to you might be able to make another recommendation.bethanymom to brennan 7, palmer & anna grace (leighs) 4> Hello, I have been reading everything that has been posted but have > yet to post. I have two sons that have been diagnosised with > probable Mito by muscle byopsy but don't have a specific type. We > have been through four years of heck, but it sounds like everyone > goes through this. We live in the Kansas City area and have only one > doctor who really gives us any info about the Mito and really it is > all overwhelming to us. I have so many questions I don't even know > where to start to I will introduce my sons.> > Gavin age four- Mito, PDD, Asthma, history of epilepsy which started > at 4 months and ended about 8 months ago and is nolonger on meds, > dosn't sweat, low tone, temerature intolerance, small head(can't > remember the long term) that is getting worse, developmental delays, > processing and motorplanning problems, and he has weird fatigue and > overall weakness with illness, weather changes, allergies, normal > play, and emotional stress. Gavin looks pretty normal and seems like > a healthy kid so we gat a lot of questions about his need for a > wheelchair or why we put limitations on his playtime. He does seem > to be responding a little to CoQ10.> > Gage age 2(turning 3 this month)-Mito, EG(eosinaphilic > gastroenteritis) EE & EC, Lung disease with episodes of oxygen hunger, > was a floppy baby(didn't hold his head up till he was 5 months old, > Autism (doing great with speech but still has big isusses with > behaviors and social), Swallowing problems, Excessive sweating, > temperture intolerances, slightly abnormal ERG, abnormal EEG, 2 > seizures, abnormal immune system(still going through testing), slight > kidney reflux, low tone, G-tube, milk-soy-seasonal-food coloring-corn-> and who knows allergies. Gage has had over 26 hospital stays for > feeding intolerance, asthma, common viruses or infection, FTT, and > reasons that never got figured out, he also seems just fine to most > he walks, talks, runs, but gets very sick and takes months to get > over th common cold. Taking COQ10 and not seeing any results, but he > has been sick for 3 months straight.> > So I guess I am looking for a good Mito doctor who can lead us in the > right direction, answer questions, and not make me feel insane. We > are tired of doctors and hospitals even after we got the diagnosis > doctors still don't believe that is the answer they feel the kids are > doing too well and that they would not make any improvements and that > we would more then likely have seen regression. We are just so > tired!! Thank you for taking the time to read this it sounds like > everyone has their hands full! Crystal mommy to Gavin and Gage.