Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Geri-Anne, I was just thinking about you today. You have been quiet lately (unless I have missed your posts). How is Wyatt doing? Did he get his button yet? How are you? Thanks for the kind words, Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2004 Report Share Posted September 17, 2004 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 March 17, 2005 Report Share Posted March 17, 2005 Sorry to hear about the increase in seizures. It's so frustrating when there is no clear reason for it... I hope you find some answers at the neuro. Please keep me posted. We are doing fine here. We are still seeing more seizures than we would like. They are still having the eye flutter seizures quite frequently throughout the day. Lindsey hasn't had a big one since November. had a pretty good sized one last week so we spent a couple of hours in the ER. On a good note, their larger seizures have gone from being more generalized to more of a prolonged absense seizure. My only issue now is when they do have a "big" one, I cannot hear it as it's so quiet. My biggest nightmare is that they are going to have one in the middle of the night and I won't be able to hear them. I plan on talking to the neuro about trying to figure out some type of monitor or something to put on them. The only thing I can think of is a pulse oximeter. I highly doubt our insurance would cover anything... Anyway, sorry to ramble. We are doing fine! I am deeply saddened by all of the kiddos that are struggling so badly right now. It makes my hatred of this disease even stronger... Take care and keep me posted! Kim zonisamide (spelling) or zonnegram> > > > Anyone one on either of these seizure meds and if so what has been> your experience? We are on lamictal and keppra right now with no> success. We may add zonisamide tomorrow. I do know that it can cause> acidiosis but we are left with very little to try. Any suggestions,> comments would be greatly appreciated.> > Thanks> > Geri-Anne and Wyatt, complex I> caringbridge.org/mn/wyattc> > > > > > Please contact mito-owner with any problems orquestions. > > > Quote Link to comment Share on other sites More sharing options...
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