Guest guest Posted November 24, 2004 Report Share Posted November 24, 2004 thanks Darla and happy thanksgiving to you and yours rosy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2004 Report Share Posted November 24, 2004 thanks Darla and happy thanksgiving to you and yours rosy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2004 Report Share Posted November 24, 2004 Sorry to hear things went badly with the IVIG. We have never tried this so haven't had any experience with it. Hope next time goes better. 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) reaction to ivig > Max had her first IVIG infusion yesterday. Better to say we tried. In the > beginning the flow rate is very very slow ( first 15 minutes). This is to > make > sure the kids tolerate the medication. As soon as they turned up the flow > rate, > Max had a reaction. The infusion ws stopped. Benadryl and hydrocortison > were > administered thru the IV, saline, and 2 1/2 hours later she was stable > enough > for us to go home. > > As anyone experienced that? > > We are scheduled to try again in 10 days time. This time they plan to use > slow flow the entire time. > > thanks, > rosy, mom to max, 5 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2004 Report Share Posted November 24, 2004 Sorry to hear things went badly with the IVIG. We have never tried this so haven't had any experience with it. Hope next time goes better. 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) reaction to ivig > Max had her first IVIG infusion yesterday. Better to say we tried. In the > beginning the flow rate is very very slow ( first 15 minutes). This is to > make > sure the kids tolerate the medication. As soon as they turned up the flow > rate, > Max had a reaction. The infusion ws stopped. Benadryl and hydrocortison > were > administered thru the IV, saline, and 2 1/2 hours later she was stable > enough > for us to go home. > > As anyone experienced that? > > We are scheduled to try again in 10 days time. This time they plan to use > slow flow the entire time. > > thanks, > rosy, mom to max, 5 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2004 Report Share Posted November 24, 2004 Happy Thanksgiving to you too! 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: Re: Rosy > thanks Darla and happy thanksgiving to you and yours > rosy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2004 Report Share Posted November 24, 2004 Happy Thanksgiving to you too! 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: Re: Rosy > thanks Darla and happy thanksgiving to you and yours > rosy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2005 Report Share Posted February 6, 2005 Most are past the worst phase of this horrible virus, but my son Marquis is acting strangely still. For the past two days he is bouncing between 104 and 105.9 degrees. Way too high for my taste, but he seems to be getting lower this afternoon and evening. He had the virus a couple of weeks ago and then recovered, or at least we thought. But then since then he eats a lot less (which is significant for him), is real run down, and now the fever. I am hopeful he is getting through it finally though. If not, we are going to need to do something to figure out the problem. He has no wheezing or issues in his lungs, and no sign of any virus; no runny nose, coughing, soar throat, etc. I am wondering if an ear infection could be the culprit although he hasn't had any pain there either. Zipporrah and Joey are TONS better and Asenath is improving daily as well. It will be a day to sing when this virus finally leaves for good! 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: How to know when is too much exhaustion? (therapy related) > Darla > > if she is till wiped out from pt, it is a sign to me that pt needs to slow > down. It is counterproductive if she needs 2 days to recover from a pt > session. > > Max stamina is greatly reduced and we have her take 'smart' breaks. We try > to > do it before she is totally wiped out. In a way we are trying to teach her > how to pace herself as she grows up. Max's pt is very sensitive and has > learned > to read her well. Being uncooperative is a first sign of fatique. Max > loves > her pt. > > Everyone else ok????/ > > best regards > rosy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2005 Report Share Posted February 6, 2005 Most are past the worst phase of this horrible virus, but my son Marquis is acting strangely still. For the past two days he is bouncing between 104 and 105.9 degrees. Way too high for my taste, but he seems to be getting lower this afternoon and evening. He had the virus a couple of weeks ago and then recovered, or at least we thought. But then since then he eats a lot less (which is significant for him), is real run down, and now the fever. I am hopeful he is getting through it finally though. If not, we are going to need to do something to figure out the problem. He has no wheezing or issues in his lungs, and no sign of any virus; no runny nose, coughing, soar throat, etc. I am wondering if an ear infection could be the culprit although he hasn't had any pain there either. Zipporrah and Joey are TONS better and Asenath is improving daily as well. It will be a day to sing when this virus finally leaves for good! 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: How to know when is too much exhaustion? (therapy related) > Darla > > if she is till wiped out from pt, it is a sign to me that pt needs to slow > down. It is counterproductive if she needs 2 days to recover from a pt > session. > > Max stamina is greatly reduced and we have her take 'smart' breaks. We try > to > do it before she is totally wiped out. In a way we are trying to teach her > how to pace herself as she grows up. Max's pt is very sensitive and has > learned > to read her well. Being uncooperative is a first sign of fatique. Max > loves > her pt. > > Everyone else ok????/ > > best regards > rosy > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.