Guest guest Posted March 7, 2005 Report Share Posted March 7, 2005 I would not hesitate but immediately take her back to the ER and MAKE them keep her until she gets hydrated! I can't understand why when they saw she was very hydrated they would then send her to a doc office rather than keep her and make sure someone was able to get the IV in her. Did they try the PICU team to get the IV in? She cannot go on without the hydration. Since we have G-tubes we often switch to either Pedialite or a mixture of Pediasure and Gateraid and this often helps at a much slower rate than normal BUT when they are only going as little as she sounds like she is, then she HAS to be hospitalized! Hope this hasn't taken long to get back to you as I don't thin I was online yesterday. Please let me know how she and you are doing! See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see a photo look into what Mito looks like Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting, bladder issues, wheelchair for distances, eye issues, autistic behaviors, gastric emptying issues... Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD, dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy, hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency, ... Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), & Marquis (3), Joey & (12 months) (some with Mito symptoms) Re: fresh muscle biopsies > > > > > > > > > > > > > > > > We waited more than a year to get into Cleveland clininc to see > Cohen. > > > > We > > > > then were sent to Parikh, a fellow. It was not pretty. He said he > would > > > do the > > > > biopsy and then didn't. He said things like is in the 50th > > > percentile for > > > > height for a five year old. She was 6 1/2. He said he did testing he > did > > > not do. > > > > He sent paperwork to docs we had not seen in years---against my > express > > > > wishes. He never opened the films of MRIs and CTs even though he > asked > > > > for them. > > > > > > > > Atlanta is close to you. Schoffner is at Children's Health Care of > > > Atlanta. They > > > > don't take medicaid. They also require written preapproval by > insurance > > > and > > > > copays paid in advance. It would probably be quicker to get a biopsy > in > > > > Atlanta. It takes about four months to get the report back. > > > > > > > > If you try Cleveland Clinic, you might be better off finding a great > > > > mito > > > doc who > > > > will ask Cohen to order specific testing done (ex. Whiteman at > > > Mayo). > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Please contact mito-owner with any problems or > > > > questions. > > > > Quote Link to comment Share on other sites More sharing options...
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