Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 Dumping is basically referred to as too fast or too slow motility. It is when the stomach doesn't function properly and either keeps food in the stomach too long before allowing it to digest or causing the food to leave too rapidly as in Zipporrah's case. During her gastric emptying scans about 90% of her formula already left the stomach immediately following the feeding during the first scan (at 0 hrs.) and by the time the first hour was completed 100% was gone from the stomach. This caused her to get full rapidly but then to be empty so fast that she was always hungry and then with the stomach fluxuating so rapidly it would cause her body to go into a kind of shock causing major sweating episodes, tummy aches, chronic diarrhea, and many other symptoms often seen with dumping. We had to place her on Imodium (3 ml. per day) to slow her motility down. It has helped amazingly and much better than other treatments we tried. We recently began the same treatment plan for Asenath as she has had chronic diarrhea since she was an infant (except for when she was on high levels of steroids). Hope this helps some. 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: Joni > > > > > > > > Hi Darla, > > It does sound a lot like the partial complex seizures that the tech > > explained to me. We have not dealt with seizures other than possibly > > this with Collin being partial complex syndrome. Since he had known > > CO2 and O2 problems, that seems to be more related for him. Have you > > had any trouble with blood sugar issues with Zipporah? > > > > > > > > > > > > > > > > > > > Yesterday we a very unusual therapy session with Zipporrah. > > > > She was > > > > > sleeping on the way to the therapy location (about 10-15 minutes > > > > drive) and > > > > > when we got there I took her out of the stroller and lay her on > > the > > > > floor in > > > > > the therapy room, took her coat off, and sat her up since her > > eyes > > > > were > > > > > open, assuming of course that she was awake. Well, this is a > > very > > > > normal > > > > > occurrence, but yesterday she just was so strange. For the > > entire > > > > hour > > > > > (minus the last 5-10 minutes) she moved slowly, would stop to > > lean > > > > on the > > > > > wall or sit and was totally dazed looking. She was staring a > > lot > > > > and > > > > > wouldn't speak, smile, or respond to stimulus no matter what we > > > > tried. The > > > > > therapist was pretty concerned as she had never seen her like > > this > > > > and it > > > > > looked like she might be having petit mals and not coming out of > > > > them in > > > > > between (clustering). She did walk to pick up a couple balls, > > > > would bend > > > > > and drop them in a hoop, etc. but no emotional responses and > > most > > > > of the > > > > > time she would stop to just sit still looking down. Then, as if > > > > someone > > > > > flipped a switch, she looked up, smiled, jumped up, ran across > > the > > > > room to > > > > > the swing she was just on, started communicating, and was extra > > > > hyper and it > > > > > was a relief to see her back to normal (but extra hyper). We > > have > > > > seen a > > > > > few seizures with Zipporrah during her two largest stroke > > episodes > > > > and have > > > > > been wondering lately if she has petit mals as there are > > occasions > > > > where she > > > > > will be staring into space, but it is so hard to tell with them > > > > often. > > > > > Petit mals are the type Asenath has and we have seen the > > clusters > > > > and the > > > > > same behavior with her. I just am hoping I am wrong. But then > > I > > > > also > > > > > wonder a bit if she was actually not awake yet??? Any opinions > > are > > > > > appreciated. > > > > > > > > > > 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) > > > > > > > > > > > > > > > > > > > > > > > > > > > > Please contact mito-owner with any problems or > > questions. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 This makes alot of sense to me now. Collin had a lot of digestive trouble as an infant, but we didn't know he had mito disorder. We gave him special formula, antacids and thickened his formula, everything. He still struggled to gain weight until about six months old, and had terrible reflux until about one year old. He still gets stomach aches sometimes and constipation. I will mention this at the next appt. sometime down the road. Thanks for the info. JoniDarla Klein wrote: Dumping is basically referred to as too fast or too slow motility. It is when the stomach doesn't function properly and either keeps food in the stomach too long before allowing it to digest or causing the food to leave too rapidly as in Zipporrah's case. During her gastric emptying scans about 90% of her formula already left the stomach immediately following the feeding during the first scan (at 0 hrs.) and by the time the first hour was completed 100% was gone from the stomach. This caused her to get full rapidly but then to be empty so fast that she was always hungry and then with the stomach fluxuating so rapidly it would cause her body to go into a kind of shock causing major sweating episodes, tummy aches, chronic diarrhea, and many other symptoms often seen with dumping. We had to place her on Imodium (3 ml. per day) to slow her motility down. It has helped amazingly and much better than other treatments we tried. We recently began the same treatment plan for Asenath as she has had chronic diarrhea since she was an infant (except for when she was on high levels of steroids). Hope this helps some. :)See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see a photo look into what Mito looks likeDarla: mommy toAsenath (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: Joni>>> >> >> > Hi Darla,> > It does sound a lot like the partial complex seizures that the tech> > explained to me. We have not dealt with seizures other than possibly> > this with Collin being partial complex syndrome. Since he had known> > CO2 and O2 problems, that seems to be more related for him. Have you> > had any trouble with blood sugar issues with Zipporah?> >> >> > > > > >> > > >> > > > > Yesterday we a very unusual therapy session with Zipporrah.> > > > She was> > > > > sleeping on the way to the therapy location (about 10-15 minutes> > > > drive) and> > > > > when we got there I took her out of the stroller and lay her on> > the> > > > floor in> > > > > the therapy room, took her coat off, and sat her up since her> > eyes> > > > were> > > > > open, assuming of course that she was awake. Well, this is a> > very> > > > normal> > > > > occurrence, but yesterday she just was so strange. For the> > entire> > > > hour> > > > > (minus the last 5-10 minutes) she moved slowly, would stop to> > lean> > > > on the> > > > > wall or sit and was totally dazed looking. She was staring a> > lot> > > > and> > > > > wouldn't speak, smile, or respond to stimulus no matter what we> > > > tried. The> > > > > therapist was pretty concerned as she had never seen her like> > this> > > > and it> > > > > looked like she might be having petit mals and not coming out of> > > > them in> > > > > between (clustering). She did walk to pick up a couple balls,> > > > would bend> > > > > and drop them in a hoop, etc. but no emotional responses and> > most> > > > of the> > > > > time she would stop to just sit still looking down. Then, as if> > > > someone> > > > > flipped a switch, she looked up, smiled, jumped up, ran across> > the> > > > room to> > > > > the swing she was just on, started communicating, and was extra> > > > hyper and it> > > > > was a relief to see her back to normal (but extra hyper). We> > have> > > > seen a> > > > > few seizures with Zipporrah during her two largest stroke> > episodes> > > > and have> > > > > been wondering lately if she has petit mals as there are> > occasions> > > > where she> > > > > will be staring into space, but it is so hard to tell with them> > > > often.> > > > > Petit mals are the type Asenath has and we have seen the> > clusters> > > > and the> > > > > same behavior with her. I just am hoping I am wrong. But then> > I> > > > also> > > > > wonder a bit if she was actually not awake yet??? Any opinions> > are> > > > > appreciated.> > > > >> > > > > 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)> > > >> > > >> > > >> > > >> > > >> > > >> > > > Please contact mito-owner with any problems or> > questions.> > > > Quote Link to comment Share on other sites More sharing options...
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