Re: Fellow Texans/ish Rite/Etc/KASS

[Guest guest]

Kass~

Where is the Mayo Clinic that you speak of? Thanks for the info on Dallas. Maybe we should look to go else where and not waste our time there. Have you had any experience with Dr. Waber (genetics) at TX Children's?? I know nothing about all this and don't know where to start now. Any help would be great as to where to go. Thanks!

Vicki &

Proud parents of Caden: 7.5 mo. Possible mito.

Fellow Texans/ish Rite/Etc

Howdy!!! (LOL...just HAD to say that<grin>) Dallas here!!! And 5+ years into dealing with my kids issues and ish Rite, with 3+ years dealing with a mito diagnosis and the docs here locally. Additionally, I know a number of others dealing with mito here locally also and what their experience's have been. Between us all, we've been through it and them all (well not really, but a whole lot of them) and thus I have some opinions on things here locally for those considering coming this direction......DON'T!! LOL No, really.......Dallas (or Fort Worth for that matter) are just NOT mito knowledgable towns. There are some good docs that will try, but ultimatly ALL have not just encouraged but begged us to go to one of the mito centers for overall care and to give them guidance in how they deal with the kids. We keep some of our specialists locally, but essentially only in case of emergency and nothing more. The same can be said for atleast two of the other mito families we know well, one of which has been trying for years now to get things pulled together here locally and has finally come to terms with the need to go to Mayo and see Dr. Whiteman with her daughter. Again, there ARE good docs here who try hard, but ultimatly, none that really KNOW Mito and all the in's and outs. And as far as getting some sort of coordination between specialists, forget it!! Just does not happen here no matter how hard one might try!! Lord knows I've been trying for years as well as others I know, and all our attempts have failed. ish Rite is a wonderful place, but your again faced with docs that do not know mito. I've heard wonderful things about the Dr. Delgado thats been mentioned, however he is a neurologist in the CP clinic so would not be the doc you'd be seeing there. The neuromuscular specialist, who would be the one seeing a mito patient coming there, has really been more of a burden than a help these last 5 years and at this point is only seeing Madison once a year so we can maintain our other services there at the hospital. She's essentially said she is no longer treating Madison, just seeing her occasionally to keep up to date on her, and that there is really nothing more SR can do for us because they just don't have the other specialists we need there. It can also be very difficult to get in and oftentimes its only because you know someone that knows someone that your able to. Being a free hospital, they are able to be selective about which kids they take. We were denied at our initial application and it was only after making contact with a neuromuscular specialist in California that happened to know the one here at ish Rite and put in a call for us that we were able to get Madison in. Children's hospital and that system has its whole set of issues also. They lost essentially their whole neurology department a few years ago because of issues within the system, and last year the top local geneticist, Dr. Golder left also due to systemic issues there. All these docs had been there for years and years and apparently things just got too bad to continue there. If we had to see a geneticist though, it would definatly be Dr. , though in all honesty he has told me personally that the kids and mito are "out of his league" and was nice enough to write a very compelling letter to our HMO when we were attempting to get approval to go see Dr. Whiteman at Mayo last year. He is very accessible and willing to help though and continues to be someone I consult with here and there. I hate that coming to Dallas is not a real viable option for us mito folk. Its a very medically oriented town and we have a ton of good doctors, just not any that have a real understanding of mito or a very good system in place for coordination of care. I'd be happy to share more specifics with anyone interested privately...if we've not seen the doc, I very likely know someone that has and can atleast offer an opinion. Sure wish I had something better to say!!! -- BIG hugs, Kass, proud mom to Chance(10-Mito), Madison(7-Mito), and Abby(6-Mito) Updates (http://www.caringbridge.org/tx/mitowhat/) "Life is not measured by the breaths we take, but by the moments that take our breath away" Unknown Please contact mito-owner with any problems or questions.

[Guest guest]

Thank you Kass! You have given me lots of great information. If you could find anything out about Waber would be great. I would also love to have the info. on airfare and anything else you or anyone else could give me. If you'd like to email me more privately that would be fine too. Whatever is best! My email is:

vicki.williams@...

Thanks again, you've been a great help!

Vicki, , & Caden

Re: Fellow Texans/ish Rite/Etc/KASS

Hi Vicki :-) Mayo Clinic is in Rochester, Minnesota and Dr. Whiteman is the mito expert there (he's a metabollic geneticist). I've not personally had any contact with Dr. Waber, but would be happy to ask around and see what others think of him. I don't recall ever hearing anything "bad" about him, just not sure I have heard a whole lot at all. In all honesty, the most efficient route to go would be to see one of the mito experts, which would be Schoffner in Atlanta, Cohen in Cleveland, or Whiteman at Mayo. Dr. Whiteman is the only one of these three that is doing follow up care, something we've found to be very important considering who we're dealing with here locally. There may still be the need to see Dr. Schoffner for a muscle biopsy, but there is a chance that the diagnosis might be able to be made without one at Mayo also. There are a number of programs to help with getting there (free airfare) that I'd be happy to share with you, and in all three locations there is a Mc House that you can generally get into, which significantly reduces the cost of being somewhere out of town. It's do-able without going into massive debt in these respects, so then its just a matter of getting insurance to cover things (sometimes not a huge issue and other times can be a real chore). Sorry I didn't have better news about the status of mito understanding here in Dallas. We're continuing to work on educating the docs here, and they are certainly more familiar with it these days then they used to be, but we're just a long way from really "getting" mito locally. Someday I hope!!! Take care and please don't hesitate to ask more about the different docs. There are differences with all three, but they are all very respected and work well together too. -- BIG hugs, Kass, proud mom to Chance(10-Mito), Madison(7-Mito), and Abby(6-Mito) Updates (http://www.caringbridge.org/tx/mitowhat/) "Life is not measured by the breaths we take, but by the moments that take our breath away" Unknown Vicki wrote:

Kass~Where is the Mayo Clinic that you speak of? Thanks for the info on Dallas. Maybe we should look to go else where and not waste our time there. Have you had any experience with Dr. Waber (genetics) at TX Children's?? I know nothing about all this and don't know where to start now. Any help would be great as to where to go. Thanks! Vicki & Proud parents of Caden: 7.5 mo. Possible mito.Please contact mito-owner with any problems or questions.