Guest guest Posted September 17, 2004 Report Share Posted September 17, 2004 I understand your frustration. I have given up on trying to call him. It seems like I never get a call back. I either make the decision on my own or talk to my ped who talks to other specialists to see what is in Wyatt's best interest. We have not had official results from Wyatt's muscle biopsy either. It was done in January. We received results in June, but they wanted to do more of a work up on the muscle and since then we have not heard anything else. I know one of the problems the first time was that the results were originally sent to the pathologist that was in the surgery room. He had no idea what to do with them so they sat on his desk. Dr. Whiteman would not return my calls so our neurolgist tracked down the biopsy lab and where the results were sent. Good luck and try talking to another doc who can help or go with your gut feeling. Geri-Anne- -- In Mito , " Darla Klein " wrote: > We have had several conversations concerning this matter as both > Asenath and Zipporrah have went the frozen method. Asenath's didn't give us > anything specific other than indicating probable Mito and we are still > waiting on Zipporrah's. Hers was done at barely 6 months of age and she > will be 11 months next week. Asenath's took much less time so I guess I am > hoping they found something to investigate further rather than either > getting bogged down with tons of biopsies OR that Dr. Whiteman has the > results and just hasn't had the time to tell me. I have been trying to talk > to him for over a month now and am starting to get a little frustrated! He > has been gone again for at least part of this week and I was told he is > their only full time guy presently which is really way too much > responsibility for anyone to handle. BUT, I need to know how to proceed in > the iron issue as until I speak to him I am unsure if I should give > Zipporrah any! But how long should I wait to treat her if she really needs > it?? I sure hope he calls next week when he goes back to work! > > Darla: mommy to > Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G- tube, > hypotonicity, disautonomy,SID, dev. delays, asthma, chronic vomiting... > Zipporrah (10 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma, trach > issues, disautonomy, hypo & hypertonicity, migraines, possible seizures, > dumping syndrome... > Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (7), Kezia (3), & > Marquis (2) (some with Mito symptoms) > > > Re: (biopsy issue)-darla > > > > Darla, Dr. Whiteman told us frozen was fine. It was the doc who > > removed it, how they handled it right after removing it, and the lab > > who was processing it that mattered more than if it was fresh. That > > was last January. He may have changed his mind since then or he > > looks at each patient differently depending on prior lab work. > > > > Geri-Anne- > > > > -- In Mito , " " wrote: > > > > > > > Since you spoke to Dr. Whiteman about this, I would be > > curious if he > > > > mentioned fresh versus frozen to you, as we use him for our > > families issues. > > > > > > He told me that if we saw him he would send us to get a fresh > > biopsy. I also > > > heard a talk with Bill Rhead and he also said that fresh is best. > > > > > > > > > > > > > > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2004 Report Share Posted September 17, 2004 Thanks. I may call Dr. Kotagal (sleep doc who originally wanted iron check). I hope he would be better at returning calls but know he too is very busy. I have had some bad meetings with him before Zipporrah was affected, but since she too has assumed Mito, he is taking the girls' cases more seriously. Thanks for your response. I do love Dr. Whiteman but boy is he way too bogged sown! Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy,SID, dev. delays, asthma, chronic vomiting... Zipporrah (10 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma, trach issues, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (7), Kezia (3), & Marquis (2) (some with Mito symptoms) Re: (biopsy issue)-darla > > > > > > > Darla, Dr. Whiteman told us frozen was fine. It was the doc who > > > removed it, how they handled it right after removing it, and the > lab > > > who was processing it that mattered more than if it was fresh. > That > > > was last January. He may have changed his mind since then or he > > > looks at each patient differently depending on prior lab work. > > > > > > Geri-Anne- > > > > > > -- In Mito , " " wrote: > > > > > > > > > Since you spoke to Dr. Whiteman about this, I would be > > > curious if he > > > > > mentioned fresh versus frozen to you, as we use him for our > > > families issues. > > > > > > > > He told me that if we saw him he would send us to get a fresh > > > biopsy. I also > > > > heard a talk with Bill Rhead and he also said that fresh is > best. > > > > > > > > > > > > > > > > > > > > > > > Please contact mito-owner with any problems or > questions. > > > Quote Link to comment Share on other sites More sharing options...
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