Guest guest Posted September 12, 2004 Report Share Posted September 12, 2004 There really hasn't been any suggestions on how to deal with it at MAyo. I was told they assume it is cyclic vomiting and basically that nothing could prevent it. No meds, nothing. I feed her through the night and she usually has a several hour break before her morning meds but it still doesn't help. She does elevate her head as well. Thanks for your suggestions. Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy,SID, dev. delays, asthma, chronic vomiting... Zipporrah (10 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma, trach issues, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (7), Kezia (3), & Marquis (2) (some with Mito symptoms) Re: Cyclic vomiting issues again > Darla, > Lucas' feeding issues started with sudden episodes of repeated > vomiting. > He is J-tube fed and I will let you know what I think impacts it. > 1. Sleeping without head elevated at at least 30 degrees. He is a > wiggler > and thus can even have his head lower than his feet. This happens for him > despite being J-tube fed. > 2. Constipation impacts him immensely. No bowel movememts the day or two > before can be seen by increased vomiting. > 3. We have had fluctuating gastric emptying scans. He has gone from > normal > to abnormal in a couple years time. It has actually been thought that > Lucas > has delayed motility and therefore even though the stomach empties that > does > not mean it can go further. > 4. If we give too much volume or give him his morning meds too fast that > can > trigger vomiting episodes at the beginnning of the day. We even start his > drip feedings about an hour afterwards and wait at least 30 minutes after > his > feedings that he received during the night. > Currently Lucas is J-tube fed and his G-button is vented into a urinary > leg > bag. The venting on a 14-20 hours a day was just begun this year. Prior > we > always had an extension available so we could attach a 60 cc syringe and > vent > whenever he seems to be belching more or starting to reflux. Sometimes no > matter what you can't be quick enough. We initially carried a roll of > bounty along > with us now we will carry a washcloth or bath towel with us. Also, I have > seen people taking emesis basins with them. Have they considered J-tube > feedings? If she has a Mic-Key button they could make it into a G-J tube > that you > could feed her via the J-tube at night and prevent stomach volumes being > too > high. They make G-J buttons that would require radiology to put in. > HTH, > Loriann > mom to 3 boys- & 12 yrs old and Lucas 8 years old with > suspected > mitochondrial encephalomyopathy, hypothyroidism secondary to pituitary > malfunction, cortical visual impairment, abnormally slow EEG, ataxic, > global > developmental delay, impaired motility, GERD, J-tube fed since 4 years of > age but has > the sunniest disposition > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 We have a Mito child in our support group with CVS. There is a CVS specialist in Chicago. There is no medicine to stop CVS but the father of this child reports that the episodes are farther apart (every 60 days instead of 35 days and the episodes are less severe). Sue Ann President, UMDF Indiana Re: Loriann There really hasn't been any suggestions on how to deal with it at MAyo. I was told they assume it is cyclic vomiting and basically that nothing could prevent it. No meds, nothing. I feed her through the night and she usually has a several hour break before her morning meds but it still doesn't help. She does elevate her head as well. Thanks for your suggestions. Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy,SID, dev. delays, asthma, chronic vomiting... Zipporrah (10 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma, trach issues, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (7), Kezia (3), & Marquis (2) (some with Mito symptoms) Re: Cyclic vomiting issues again > Darla, > Lucas' feeding issues started with sudden episodes of repeated > vomiting. > He is J-tube fed and I will let you know what I think impacts it. > 1. Sleeping without head elevated at at least 30 degrees. He is a > wiggler > and thus can even have his head lower than his feet. This happens for him > despite being J-tube fed. > 2. Constipation impacts him immensely. No bowel movememts the day or two > before can be seen by increased vomiting. > 3. We have had fluctuating gastric emptying scans. He has gone from > normal > to abnormal in a couple years time. It has actually been thought that > Lucas > has delayed motility and therefore even though the stomach empties that > does > not mean it can go further. > 4. If we give too much volume or give him his morning meds too fast that > can > trigger vomiting episodes at the beginnning of the day. We even start his > drip feedings about an hour afterwards and wait at least 30 minutes after > his > feedings that he received during the night. > Currently Lucas is J-tube fed and his G-button is vented into a urinary > leg > bag. The venting on a 14-20 hours a day was just begun this year. Prior > we > always had an extension available so we could attach a 60 cc syringe and > vent > whenever he seems to be belching more or starting to reflux. Sometimes no > matter what you can't be quick enough. We initially carried a roll of > bounty along > with us now we will carry a washcloth or bath towel with us. Also, I have > seen people taking emesis basins with them. Have they considered J-tube > feedings? If she has a Mic-Key button they could make it into a G-J tube > that you > could feed her via the J-tube at night and prevent stomach volumes being > too > high. They make G-J buttons that would require radiology to put in. > HTH, > Loriann > mom to 3 boys- & 12 yrs old and Lucas 8 years old with > suspected > mitochondrial encephalomyopathy, hypothyroidism secondary to pituitary > malfunction, cortical visual impairment, abnormally slow EEG, ataxic, > global > developmental delay, impaired motility, GERD, J-tube fed since 4 years of > age but has > the sunniest disposition > Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 We have a Mito child in our support group with CVS. There is a CVS specialist in Chicago. There is no medicine to stop CVS but the father of this child reports that the episodes are farther apart (every 60 days instead of 35 days and the episodes are less severe). Sue Ann President, UMDF Indiana Re: Loriann There really hasn't been any suggestions on how to deal with it at MAyo. I was told they assume it is cyclic vomiting and basically that nothing could prevent it. No meds, nothing. I feed her through the night and she usually has a several hour break before her morning meds but it still doesn't help. She does elevate her head as well. Thanks for your suggestions. Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy,SID, dev. delays, asthma, chronic vomiting... Zipporrah (10 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma, trach issues, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (7), Kezia (3), & Marquis (2) (some with Mito symptoms) Re: Cyclic vomiting issues again > Darla, > Lucas' feeding issues started with sudden episodes of repeated > vomiting. > He is J-tube fed and I will let you know what I think impacts it. > 1. Sleeping without head elevated at at least 30 degrees. He is a > wiggler > and thus can even have his head lower than his feet. This happens for him > despite being J-tube fed. > 2. Constipation impacts him immensely. No bowel movememts the day or two > before can be seen by increased vomiting. > 3. We have had fluctuating gastric emptying scans. He has gone from > normal > to abnormal in a couple years time. It has actually been thought that > Lucas > has delayed motility and therefore even though the stomach empties that > does > not mean it can go further. > 4. If we give too much volume or give him his morning meds too fast that > can > trigger vomiting episodes at the beginnning of the day. We even start his > drip feedings about an hour afterwards and wait at least 30 minutes after > his > feedings that he received during the night. > Currently Lucas is J-tube fed and his G-button is vented into a urinary > leg > bag. The venting on a 14-20 hours a day was just begun this year. Prior > we > always had an extension available so we could attach a 60 cc syringe and > vent > whenever he seems to be belching more or starting to reflux. Sometimes no > matter what you can't be quick enough. We initially carried a roll of > bounty along > with us now we will carry a washcloth or bath towel with us. Also, I have > seen people taking emesis basins with them. Have they considered J-tube > feedings? If she has a Mic-Key button they could make it into a G-J tube > that you > could feed her via the J-tube at night and prevent stomach volumes being > too > high. They make G-J buttons that would require radiology to put in. > HTH, > Loriann > mom to 3 boys- & 12 yrs old and Lucas 8 years old with > suspected > mitochondrial encephalomyopathy, hypothyroidism secondary to pituitary > malfunction, cortical visual impairment, abnormally slow EEG, ataxic, > global > developmental delay, impaired motility, GERD, J-tube fed since 4 years of > age but has > the sunniest disposition > Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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