Guest guest Posted December 18, 2004 Report Share Posted December 18, 2004 , Thank you for asking about Sam's CDG testing. We've been at the hospital all well so I am just reading the mito digests now. We actually just did the repeat test this past weeek while he was in and i think it takes about 3 -4 weeks to come back. (or at least to make its way from the lab to our doctor). So much has been going on that I had forgotten to repeat it back in October when we were supposed to. I doubt it matters. Regarding IVIg for Vasculitis - do your docs use the 2g/kg dose or the immune deficient dose (much smaller). I wonder if you used a higher dose if it would help. We do also use steroids but not in high amounts. Darla: so glad that the MRI looked better but sorry that she has to remain on steroids. Its a double edged sword but in her case it sounds like it is the right thing to do and so you just do the best you can. Thank God she responds to them. and Darla: A little boy I know developed vasculitis about a month ago. he does not have a known case of mito although there are times i wonder. Anyway, he had an acute downhill course. he had been in the hospital just for some routine GI testing and woke up one day with weakness and trembling and I think peripheral neuropathy. Withina few days he went into respiratory distress and had to be placed on a vent, was bleeding out everywhere, uncontrollable blood pressures and questionable stroke like issues. he cannot walk and can barely sit up. They tried the high dose IVIG initially to no avail - the vasculitis continued to progress. They proceeded to slam him with steroids in amounts I have never personally witnessed in my nursing experience. Thankfully that was the right thing to do and he is now out of the ICU and heading to a rehab hospital. For a time they talked about using cytoxan I believe (chemotherapy which is used for some cases of vasculitis). It was all so sudden and made me thankful that sammy's has never progressed to that extent of being placed on a vent. Anne > > Ann, > How have the last round of CDG tests come out? Any more news on the > matter? > Just curious.. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2004 Report Share Posted December 18, 2004 , Thank you for asking about Sam's CDG testing. We've been at the hospital all well so I am just reading the mito digests now. We actually just did the repeat test this past weeek while he was in and i think it takes about 3 -4 weeks to come back. (or at least to make its way from the lab to our doctor). So much has been going on that I had forgotten to repeat it back in October when we were supposed to. I doubt it matters. Regarding IVIg for Vasculitis - do your docs use the 2g/kg dose or the immune deficient dose (much smaller). I wonder if you used a higher dose if it would help. We do also use steroids but not in high amounts. Darla: so glad that the MRI looked better but sorry that she has to remain on steroids. Its a double edged sword but in her case it sounds like it is the right thing to do and so you just do the best you can. Thank God she responds to them. and Darla: A little boy I know developed vasculitis about a month ago. he does not have a known case of mito although there are times i wonder. Anyway, he had an acute downhill course. he had been in the hospital just for some routine GI testing and woke up one day with weakness and trembling and I think peripheral neuropathy. Withina few days he went into respiratory distress and had to be placed on a vent, was bleeding out everywhere, uncontrollable blood pressures and questionable stroke like issues. he cannot walk and can barely sit up. They tried the high dose IVIG initially to no avail - the vasculitis continued to progress. They proceeded to slam him with steroids in amounts I have never personally witnessed in my nursing experience. Thankfully that was the right thing to do and he is now out of the ICU and heading to a rehab hospital. For a time they talked about using cytoxan I believe (chemotherapy which is used for some cases of vasculitis). It was all so sudden and made me thankful that sammy's has never progressed to that extent of being placed on a vent. Anne > > Ann, > How have the last round of CDG tests come out? Any more news on the > matter? > Just curious.. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2004 Report Share Posted December 19, 2004 That is so scary to hear about! Oh, I am just feeling horrible for not only the child, but for the parents! This issue is so unknown and so hard to treat. We don't know what to expect ever with it, do we? I know most of the time it is found on autopsy so have always felt blessed Asenath's was found when it was. We thought 1 narrow artery to 4 narrow arteries in a year was bad, but that poor child's case is so scary. I am glad to hear the steroids helped. How much did they use? We were told Asenath's amount was extremely high (It was started at 10 ml per day with the dosage being a 15 mg/5 ml. liquid solution). Was it much higher than that? Cytoxin was actually the other drug considered for Asenath. We knew we couldn't risk giving it to her when we began because not only was she way undernourished at the time but it was also the fall with the winter months approaching and she caught every small virus around. Thanks for sharing this information with me. I would appreciate keeping updated and if you still have contact with them, let them know about our case and progress as well as let them know if they would like to talk on the phone, I would be open to that. It is such a rare case that it sometimes helps to talk to those of us who have been through it. You or they can write to me at honeybear50317@... to get my phone number or to give me theirs. Thanks again. I will be praying for them. 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: CDG/Ann > > > > , > Thank you for asking about Sam's CDG testing. We've been at the > hospital all well so I am just reading the mito digests now. > > We actually just did the repeat test this past weeek while he was in > and i think it takes about 3 -4 weeks to come back. (or at least to > make its way from the lab to our doctor). So much has been going on > that I had forgotten to repeat it back in October when we were > supposed to. I doubt it matters. > > Regarding IVIg for Vasculitis - do your docs use the 2g/kg dose or > the immune deficient dose (much smaller). I wonder if you used a > higher dose if it would help. We do also use steroids but not in > high amounts. > > Darla: so glad that the MRI looked better but sorry that she has to > remain on steroids. Its a double edged sword but in her case it > sounds like it is the right thing to do and so you just do the best > you can. Thank God she responds to them. > > and Darla: A little boy I know developed vasculitis about a > month ago. he does not have a known case of mito although there are > times i wonder. Anyway, he had an acute downhill course. he had been > in the hospital just for some routine GI testing and woke up one day > with weakness and trembling and I think peripheral neuropathy. > Withina few days he went into respiratory distress and had to be > placed on a vent, was bleeding out everywhere, uncontrollable blood > pressures and questionable stroke like issues. he cannot walk and > can barely sit up. They tried the high dose IVIG initially to no > avail - the vasculitis continued to progress. They proceeded to slam > him with steroids in amounts I have never personally witnessed in my > nursing experience. Thankfully that was the right thing to do and he > is now out of the ICU and heading to a rehab hospital. For a time > they talked about using cytoxan I believe (chemotherapy which is used > for some cases of vasculitis). It was all so sudden and made me > thankful that sammy's has never progressed to that extent of being > placed on a vent. > > Anne > > > > > > Ann, > > How have the last round of CDG tests come out? Any more news on the > > matter? > > Just curious.. > > > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2004 Report Share Posted December 19, 2004 That is so scary to hear about! Oh, I am just feeling horrible for not only the child, but for the parents! This issue is so unknown and so hard to treat. We don't know what to expect ever with it, do we? I know most of the time it is found on autopsy so have always felt blessed Asenath's was found when it was. We thought 1 narrow artery to 4 narrow arteries in a year was bad, but that poor child's case is so scary. I am glad to hear the steroids helped. How much did they use? We were told Asenath's amount was extremely high (It was started at 10 ml per day with the dosage being a 15 mg/5 ml. liquid solution). Was it much higher than that? Cytoxin was actually the other drug considered for Asenath. We knew we couldn't risk giving it to her when we began because not only was she way undernourished at the time but it was also the fall with the winter months approaching and she caught every small virus around. Thanks for sharing this information with me. I would appreciate keeping updated and if you still have contact with them, let them know about our case and progress as well as let them know if they would like to talk on the phone, I would be open to that. It is such a rare case that it sometimes helps to talk to those of us who have been through it. You or they can write to me at honeybear50317@... to get my phone number or to give me theirs. Thanks again. I will be praying for them. 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: CDG/Ann > > > > , > Thank you for asking about Sam's CDG testing. We've been at the > hospital all well so I am just reading the mito digests now. > > We actually just did the repeat test this past weeek while he was in > and i think it takes about 3 -4 weeks to come back. (or at least to > make its way from the lab to our doctor). So much has been going on > that I had forgotten to repeat it back in October when we were > supposed to. I doubt it matters. > > Regarding IVIg for Vasculitis - do your docs use the 2g/kg dose or > the immune deficient dose (much smaller). I wonder if you used a > higher dose if it would help. We do also use steroids but not in > high amounts. > > Darla: so glad that the MRI looked better but sorry that she has to > remain on steroids. Its a double edged sword but in her case it > sounds like it is the right thing to do and so you just do the best > you can. Thank God she responds to them. > > and Darla: A little boy I know developed vasculitis about a > month ago. he does not have a known case of mito although there are > times i wonder. Anyway, he had an acute downhill course. he had been > in the hospital just for some routine GI testing and woke up one day > with weakness and trembling and I think peripheral neuropathy. > Withina few days he went into respiratory distress and had to be > placed on a vent, was bleeding out everywhere, uncontrollable blood > pressures and questionable stroke like issues. he cannot walk and > can barely sit up. They tried the high dose IVIG initially to no > avail - the vasculitis continued to progress. They proceeded to slam > him with steroids in amounts I have never personally witnessed in my > nursing experience. Thankfully that was the right thing to do and he > is now out of the ICU and heading to a rehab hospital. For a time > they talked about using cytoxan I believe (chemotherapy which is used > for some cases of vasculitis). It was all so sudden and made me > thankful that sammy's has never progressed to that extent of being > placed on a vent. > > Anne > > > > > > Ann, > > How have the last round of CDG tests come out? Any more news on the > > matter? > > Just curious.. > > > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
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