Guest guest Posted October 22, 2004 Report Share Posted October 22, 2004 Are you actually trying to send this message to the person who is having problems getting help for their Mito related issues? I believe it is Keely (Ilikemonstertrucks is her ID I believe). If not, let me know. Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (11 mon.) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) Re: Surgery during a crash?? > > > > Keely (Mom to , 21 months, suspected mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2004 Report Share Posted November 21, 2004 I just got home last night from a week stay in the hospital with my girls so I will try to get back to you as soon as possible, but wanted to let you know I got your message and do care. Talk to you soon. See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) Re: Surgery during a crash?? > > > > > > > > > > > > > My worry is that the doctor seems unwilling to start any sort of > > > treatment until the biopsy is done... weve basically been told > > > to 'wait and see' until then, so if we reschedule it, were then in a > > > wait mode before anything is done to help him... > > > hes still a little iffy today, but we meet with the anasthesiologist > > > this afternoon so i will talk with her about my concerns. > > > He actually did just finish a growth spurt (5 lbs in 4 weeks!) so > > > that could account for it as well! > > > > > > > > > > > > > > > > > > > > > > I had a feeling this was on its way. its still not official but > > > > > theres alot making me think B's on his way to another crash. > > > > > His pre op appointment (muscle biopsy is on tuesday) was last > > > > > Wedensday, and he had been doing SO well till then... gained 5 > > > lbs > > > > > in a month, sleeping only 13-14 hours a day, so active, and > > > > happy. > > > > > Then on Thursday his eating slowed down BIG TIME (were talking a > > > > > small bowl of cereal and a few macaroni noodles all day). Since > > > > > then his naps have slowly increased, his sleeping at night is > > > > > longer, hes now up to 16-17 hours of sleep a day. His tremors > > > are > > > > > back REALLY BAD, another thing that had been gone for a while. > > > > > except now he gets them when hes up and about instead of just > > > > first > > > > > thing in the morning. > > > > > Overall hes still in good shape, hes not falling yet, and no > > > fever > > > > > so far... > > > > > He had Chicken Pox 3 weeks ago and just finished them up a week > > > > and > > > > > a half ago.... > > > > > My worry is that by tuesday we could be in really bad shape... > > > > will > > > > > they still do the surgery? will there be more risks? should i > > > be > > > > > worried about this??? > > > > > If we try to schedule surgery for a time hes either not sick, or > > > > not > > > > > having a crash, i will never happen... (especially since theres > > > > > generally a 3-6 week wait for appointments each time). > > > > > gah. > > > > > > > > > > Keely (Mom to , 21 months, suspected mito) > > > > > > > > > > > > > > > > > > > > > Please contact mito-owner with any problems or > > > questions. > > > Quote Link to comment Share on other sites More sharing options...
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