Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 Thanks for your explanation. Always open to info on this puzzling area. Mito is enough, we didn't need Vasculitis added. Thankfully Asenath is doing decent at this point, even with this nasty virus in the home. 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) Darla > > > > > > > > > > > > > Darla, have they ever told you what type of vasculitis Aseneth > has? > > > we just went back to hte neurosurgeon for my sons vascultits and I > > > forgot to ask him that question. All he says is it is in the > > > arteries which we knew. And that it is continually moving around, > he > > > also said he is missing an artery in one part of the circle of > > > willis, just one of his many quirks. > > > He also emphasized to never ever let him get dehydrated as that is > > > very bad for vasculitis, have you heard this? > > > > > > > > > > > > > > > > > > > > > > > > Please contact mito-owner with any problems or > questions. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 Thanks for your explanation. Always open to info on this puzzling area. Mito is enough, we didn't need Vasculitis added. Thankfully Asenath is doing decent at this point, even with this nasty virus in the home. 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) Darla > > > > > > > > > > > > > Darla, have they ever told you what type of vasculitis Aseneth > has? > > > we just went back to hte neurosurgeon for my sons vascultits and I > > > forgot to ask him that question. All he says is it is in the > > > arteries which we knew. And that it is continually moving around, > he > > > also said he is missing an artery in one part of the circle of > > > willis, just one of his many quirks. > > > He also emphasized to never ever let him get dehydrated as that is > > > very bad for vasculitis, have you heard this? > > > > > > > > > > > > > > > > > > > > > > > > Please contact mito-owner with any problems or > questions. > > > Quote Link to comment Share on other sites More sharing options...
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