Guest guest Posted February 25, 2001 Report Share Posted February 25, 2001 Hi My daughter is 18 mos. and has had refluck from the beginning. In the mornings is usually the worst time of day for some reason. Maybe from secretions being swallowed through the night??? But she gags and gags until a little tiny bit will come up or nothing at all. Through the day she is usually ok but in the mornigs..look out. This is not every day either. So it could be reflux but you never know with these kids, it is always something different than what you think. Nothing has helped Lexi with it so far. She is on no meds for it because they never helped and they have too many side effects, which they might help for your daughter though so you might check that out. mother to Lexi __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2001 Report Share Posted February 25, 2001 Jill, My daughter has reflux. It has gotten better since she has gotten older. But when she has a problem with the reflux it is in the morning. We had her on propulsid which worked really well but they have since taken it off the market. We are in the process of getting her into the study so we can then keep her on the propulsid. In the mean time we have been using tums. I don't know if Kayla can take anything by mouth but tums has been working really well for . Also I don't know if she is old enough to take them as well. Doris Behan (mom to ) 18 in March Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2001 Report Share Posted February 27, 2001 Jill, They did a barium swallow. Which they just had her drink this barium drink and then took films of how she drank and how it went down and then waited 15 minutes and took more x-rays to see what had happened to the barium. Hope this helps. Kim mom the Devin 10 yrs. and Saleah 2 1/2 yrs. (CHARGE) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2001 Report Share Posted February 27, 2001 Jill, Does Kayla have a vascular ring?? Foley Re: RE: reflux > > > >Saleah is also having this problem in the mornings (mostly). She had a > >swallow study done at about 10 months old and they said she was o.k. so > they > >took her g-tube out. Now I had her tested again about a month ago and they > >told me that she has reflux quite bad. Is this something that comes and > >goes. She had it when she was born, then they said it was gone, now it's > >back??? I had her tested again because for 2 months she would cough and > >cough and cough until she threw up. It was horrible. At first I though it > >had something to do with the fact that she had her tonsils and adnoids > taken > >out (it started within a few days of that surgery), but the docs say no. > So, > >she is now taking Zantac and Reglan 3 times a day and it is helping some, > but > >mornings are still horrible. The second she wakes up she starts coughing > and > >doesn't stop until she gags and gets the dry heaves or if she's drank > >anything in the night, she throws up. It's a horrible way to wake up every > >morning. She will also still cough during the day (once in a while) until > >she throws up. > > > >I feel like I'm going crazy sometimes, but I'm glad to know I'm not the > only > >one... > > > >Kim > >mom to Devin 10 yrs. and Saleah 2 1/2 yrs. (CHARGE) > > > > > > " 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July > >20-22, 2001. Information will be available first in CHARGE Accounts, the > >CHARGE Syndrome Foundation's newsletter. " > > > >For information about the CHARGE Syndrome > >Foundation or to become a member (and get the newsletter) > >please contact marion@... or visit > >the CHARGE Syndrome Foundation web page > >at http://www.chargesyndrome.org > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2001 Report Share Posted February 27, 2001 No Kayla doesnt have a vascular ring. She just had the coloboma at birth as well as the coanal atresia which were both repaired. Now we are just struggling with the cognitive delays. And maybe reflux. What is the vascular ring? Jill mom to Kayla (5) charge and Dakota(2) Re: RE: reflux >Jill, >Does Kayla have a vascular ring?? > Foley > Re: RE: reflux >> >> >> >Saleah is also having this problem in the mornings (mostly). She had a >> >swallow study done at about 10 months old and they said she was o.k. so >> they >> >took her g-tube out. Now I had her tested again about a month ago and >they >> >told me that she has reflux quite bad. Is this something that comes and >> >goes. She had it when she was born, then they said it was gone, now it's >> >back??? I had her tested again because for 2 months she would cough and >> >cough and cough until she threw up. It was horrible. At first I though >it >> >had something to do with the fact that she had her tonsils and adnoids >> taken >> >out (it started within a few days of that surgery), but the docs say no. >> So, >> >she is now taking Zantac and Reglan 3 times a day and it is helping some, >> but >> >mornings are still horrible. The second she wakes up she starts coughing >> and >> >doesn't stop until she gags and gets the dry heaves or if she's drank >> >anything in the night, she throws up. It's a horrible way to wake up >every >> >morning. She will also still cough during the day (once in a while) >until >> >she throws up. >> > >> >I feel like I'm going crazy sometimes, but I'm glad to know I'm not the >> only >> >one... >> > >> >Kim >> >mom to Devin 10 yrs. and Saleah 2 1/2 yrs. (CHARGE) >> > >> > >> > " 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, >July >> >20-22, 2001. Information will be available first in CHARGE Accounts, the >> >CHARGE Syndrome Foundation's newsletter. " >> > >> >For information about the CHARGE Syndrome >> >Foundation or to become a member (and get the newsletter) >> >please contact marion@... or visit >> >the CHARGE Syndrome Foundation web page >> >at http://www.chargesyndrome.org >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2001 Report Share Posted February 28, 2001 Jill, One quick question. Were Kayla's colobomas in her retinas? How were they repaired? Thanks Kim mom to Devin 10 yrs. and Saleah 2 1/2 yrs. (CHARGE) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2001 Report Share Posted February 28, 2001 Jill, a vascular ring is an artery from the heart that impresses on the esophagus and/or trachea. In Jillian's case, they wanted to sver it because she gagged and coughed so much the 1st year of life that they thought her mucus built up at the indentation and spilled over into her trachea causing the gagging and coughing...speaking of which she did it this morning before school and puked ALL in her hair as I was dressing her and I had to stick her in the tub.... A lot of the kids with the vascular rings are not diagnosed with them until symptoms occur... It might be worth checking into. Has Kayla had an echo?? (heart) Foley Mom to jackson 5 1/2, ( CHARGE in heaven) and Jillian 3 on March 22....cHaRGE Re: RE: reflux > >> > >> > >> >Saleah is also having this problem in the mornings (mostly). She had a > >> >swallow study done at about 10 months old and they said she was o.k. so > >> they > >> >took her g-tube out. Now I had her tested again about a month ago and > >they > >> >told me that she has reflux quite bad. Is this something that comes and > >> >goes. She had it when she was born, then they said it was gone, now > it's > >> >back??? I had her tested again because for 2 months she would cough and > >> >cough and cough until she threw up. It was horrible. At first I though > >it > >> >had something to do with the fact that she had her tonsils and adnoids > >> taken > >> >out (it started within a few days of that surgery), but the docs say no. > >> So, > >> >she is now taking Zantac and Reglan 3 times a day and it is helping > some, > >> but > >> >mornings are still horrible. The second she wakes up she starts > coughing > >> and > >> >doesn't stop until she gags and gets the dry heaves or if she's drank > >> >anything in the night, she throws up. It's a horrible way to wake up > >every > >> >morning. She will also still cough during the day (once in a while) > >until > >> >she throws up. > >> > > >> >I feel like I'm going crazy sometimes, but I'm glad to know I'm not the > >> only > >> >one... > >> > > >> >Kim > >> >mom to Devin 10 yrs. and Saleah 2 1/2 yrs. (CHARGE) > >> > > >> > > >> > " 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, > >July > >> >20-22, 2001. Information will be available first in CHARGE Accounts, the > >> >CHARGE Syndrome Foundation's newsletter. " > >> > > >> >For information about the CHARGE Syndrome > >> >Foundation or to become a member (and get the newsletter) > >> >please contact marion@... or visit > >> >the CHARGE Syndrome Foundation web page > >> >at http://www.chargesyndrome.org > >> > > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2001 Report Share Posted March 1, 2001 Im sorry i ment that her crossed eyeys were repaired then they found the colobomas shortly after birth. Hers are so far down thought that they shouldnt bother her sight. Thanks for bringing that to my attention. Jill Re: RE: reflux >Jill, > >One quick question. Were Kayla's colobomas in her retinas? How were they >repaired? > >Thanks >Kim >mom to Devin 10 yrs. and Saleah 2 1/2 yrs. (CHARGE) > > " 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July >20-22, 2001. Information will be available first in CHARGE Accounts, the >CHARGE Syndrome Foundation's newsletter. " > >For information about the CHARGE Syndrome >Foundation or to become a member (and get the newsletter) >please contact marion@... or visit >the CHARGE Syndrome Foundation web page >at http://www.chargesyndrome.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2001 Report Share Posted March 1, 2001 No Kayla hasnt had a echo, they found a small murmmer at birth did a few tests and everything is okay now. Where are you from? it seems we have some of the same problems in common, it would be great to finnally share some of my problems with Kayla with someone who has been there> JILL in Wisconsin mom to Kayla (5) charge and Dakota (2) Re: RE: reflux >Jill, a vascular ring is an artery from the heart that impresses on the >esophagus and/or trachea. In Jillian's case, they wanted to sver it because >she gagged and coughed so much the 1st year of life that they thought her >mucus built up at the indentation and spilled over into her trachea causing >the gagging and coughing...speaking of which she did it this morning before >school and puked ALL in her hair as I was dressing her and I had to stick >her in the tub.... A lot of the kids with the vascular rings are not >diagnosed with them until symptoms occur... It might be worth checking into. >Has Kayla had an echo?? (heart) > Foley >Mom to jackson 5 1/2, ( CHARGE in heaven) and Jillian 3 on March >22....cHaRGE > Re: RE: reflux >> >> >> >> >> >> >Saleah is also having this problem in the mornings (mostly). She had >a >> >> >swallow study done at about 10 months old and they said she was o.k. >so >> >> they >> >> >took her g-tube out. Now I had her tested again about a month ago and >> >they >> >> >told me that she has reflux quite bad. Is this something that comes >and >> >> >goes. She had it when she was born, then they said it was gone, now >> it's >> >> >back??? I had her tested again because for 2 months she would cough >and >> >> >cough and cough until she threw up. It was horrible. At first I >though >> >it >> >> >had something to do with the fact that she had her tonsils and adnoids >> >> taken >> >> >out (it started within a few days of that surgery), but the docs say >no. >> >> So, >> >> >she is now taking Zantac and Reglan 3 times a day and it is helping >> some, >> >> but >> >> >mornings are still horrible. The second she wakes up she starts >> coughing >> >> and >> >> >doesn't stop until she gags and gets the dry heaves or if she's drank >> >> >anything in the night, she throws up. It's a horrible way to wake up >> >every >> >> >morning. She will also still cough during the day (once in a while) >> >until >> >> >she throws up. >> >> > >> >> >I feel like I'm going crazy sometimes, but I'm glad to know I'm not >the >> >> only >> >> >one... >> >> > >> >> >Kim >> >> >mom to Devin 10 yrs. and Saleah 2 1/2 yrs. (CHARGE) >> >> > >> >> > >> >> > " 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, >> >July >> >> >20-22, 2001. Information will be available first in CHARGE Accounts, >the >> >> >CHARGE Syndrome Foundation's newsletter. " >> >> > >> >> >For information about the CHARGE Syndrome >> >> >Foundation or to become a member (and get the newsletter) >> >> >please contact marion@... or visit >> >> >the CHARGE Syndrome Foundation web page >> >> >at http://www.chargesyndrome.org >> >> > >> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2001 Report Share Posted March 2, 2001 Kayla has an appt with her peds doc. next week, I will bring this up then thanks for letting me know, they said the murmmer is innocent whatever that means. And yes i dont need any surprises later on. Is the echo alot involved or just the simple procedure of hooking up all the wires as in other heart tests? Jill Re: RE: reflux >Jill, >Not to scare you but Jillian's had 3 heart defects found later after being >cleared from the cardiologist 3 times never having to go back again and now >she may need heart surgery!!! So just the simpple fact that Kayla has CHARGE >is reason enough to get a very thorough echo... You don't want any surprises >in the future. The murmur must come from something????? > Foley > Re: RE: reflux >> >> >> >> >> >> >> >> >> >Saleah is also having this problem in the mornings (mostly). She >had >> >a >> >> >> >swallow study done at about 10 months old and they said she was >o.k. >> >so >> >> >> they >> >> >> >took her g-tube out. Now I had her tested again about a month ago >> and >> >> >they >> >> >> >told me that she has reflux quite bad. Is this something that >comes >> >and >> >> >> >goes. She had it when she was born, then they said it was gone, >now >> >> it's >> >> >> >back??? I had her tested again because for 2 months she would >cough >> >and >> >> >> >cough and cough until she threw up. It was horrible. At first I >> >though >> >> >it >> >> >> >had something to do with the fact that she had her tonsils and >> adnoids >> >> >> taken >> >> >> >out (it started within a few days of that surgery), but the docs >say >> >no. >> >> >> So, >> >> >> >she is now taking Zantac and Reglan 3 times a day and it is helping >> >> some, >> >> >> but >> >> >> >mornings are still horrible. The second she wakes up she starts >> >> coughing >> >> >> and >> >> >> >doesn't stop until she gags and gets the dry heaves or if she's >drank >> >> >> >anything in the night, she throws up. It's a horrible way to wake >up >> >> >every >> >> >> >morning. She will also still cough during the day (once in a >while) >> >> >until >> >> >> >she throws up. >> >> >> > >> >> >> >I feel like I'm going crazy sometimes, but I'm glad to know I'm not >> >the >> >> >> only >> >> >> >one... >> >> >> > >> >> >> >Kim >> >> >> >mom to Devin 10 yrs. and Saleah 2 1/2 yrs. (CHARGE) >> >> >> > >> >> >> > >> >> >> > " 5th International CHARGE Syndrome Conference, Indianapolis, >Indiana, >> >> >July >> >> >> >20-22, 2001. Information will be available first in CHARGE >Accounts, >> >the >> >> >> >CHARGE Syndrome Foundation's newsletter. " >> >> >> > >> >> >> >For information about the CHARGE Syndrome >> >> >> >Foundation or to become a member (and get the newsletter) >> >> >> >please contact marion@... or visit >> >> >> >the CHARGE Syndrome Foundation web page >> >> >> >at http://www.chargesyndrome.org >> >> >> > >> >> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2001 Report Share Posted March 2, 2001 Jill, I live in Virginia about 30 miles west of Washington DC.... Foley Re: RE: reflux > >> >> > >> >> > >> >> >Saleah is also having this problem in the mornings (mostly). She had > >a > >> >> >swallow study done at about 10 months old and they said she was o.k. > >so > >> >> they > >> >> >took her g-tube out. Now I had her tested again about a month ago > and > >> >they > >> >> >told me that she has reflux quite bad. Is this something that comes > >and > >> >> >goes. She had it when she was born, then they said it was gone, now > >> it's > >> >> >back??? I had her tested again because for 2 months she would cough > >and > >> >> >cough and cough until she threw up. It was horrible. At first I > >though > >> >it > >> >> >had something to do with the fact that she had her tonsils and > adnoids > >> >> taken > >> >> >out (it started within a few days of that surgery), but the docs say > >no. > >> >> So, > >> >> >she is now taking Zantac and Reglan 3 times a day and it is helping > >> some, > >> >> but > >> >> >mornings are still horrible. The second she wakes up she starts > >> coughing > >> >> and > >> >> >doesn't stop until she gags and gets the dry heaves or if she's drank > >> >> >anything in the night, she throws up. It's a horrible way to wake up > >> >every > >> >> >morning. She will also still cough during the day (once in a while) > >> >until > >> >> >she throws up. > >> >> > > >> >> >I feel like I'm going crazy sometimes, but I'm glad to know I'm not > >the > >> >> only > >> >> >one... > >> >> > > >> >> >Kim > >> >> >mom to Devin 10 yrs. and Saleah 2 1/2 yrs. (CHARGE) > >> >> > > >> >> > > >> >> > " 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, > >> >July > >> >> >20-22, 2001. Information will be available first in CHARGE Accounts, > >the > >> >> >CHARGE Syndrome Foundation's newsletter. " > >> >> > > >> >> >For information about the CHARGE Syndrome > >> >> >Foundation or to become a member (and get the newsletter) > >> >> >please contact marion@... or visit > >> >> >the CHARGE Syndrome Foundation web page > >> >> >at http://www.chargesyndrome.org > >> >> > > >> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2001 Report Share Posted March 2, 2001 Jill, Not to scare you but Jillian's had 3 heart defects found later after being cleared from the cardiologist 3 times never having to go back again and now she may need heart surgery!!! So just the simpple fact that Kayla has CHARGE is reason enough to get a very thorough echo... You don't want any surprises in the future. The murmur must come from something????? Foley Re: RE: reflux > >> >> > >> >> > >> >> >Saleah is also having this problem in the mornings (mostly). She had > >a > >> >> >swallow study done at about 10 months old and they said she was o.k. > >so > >> >> they > >> >> >took her g-tube out. Now I had her tested again about a month ago > and > >> >they > >> >> >told me that she has reflux quite bad. Is this something that comes > >and > >> >> >goes. She had it when she was born, then they said it was gone, now > >> it's > >> >> >back??? I had her tested again because for 2 months she would cough > >and > >> >> >cough and cough until she threw up. It was horrible. At first I > >though > >> >it > >> >> >had something to do with the fact that she had her tonsils and > adnoids > >> >> taken > >> >> >out (it started within a few days of that surgery), but the docs say > >no. > >> >> So, > >> >> >she is now taking Zantac and Reglan 3 times a day and it is helping > >> some, > >> >> but > >> >> >mornings are still horrible. The second she wakes up she starts > >> coughing > >> >> and > >> >> >doesn't stop until she gags and gets the dry heaves or if she's drank > >> >> >anything in the night, she throws up. It's a horrible way to wake up > >> >every > >> >> >morning. She will also still cough during the day (once in a while) > >> >until > >> >> >she throws up. > >> >> > > >> >> >I feel like I'm going crazy sometimes, but I'm glad to know I'm not > >the > >> >> only > >> >> >one... > >> >> > > >> >> >Kim > >> >> >mom to Devin 10 yrs. and Saleah 2 1/2 yrs. (CHARGE) > >> >> > > >> >> > > >> >> > " 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, > >> >July > >> >> >20-22, 2001. Information will be available first in CHARGE Accounts, > >the > >> >> >CHARGE Syndrome Foundation's newsletter. " > >> >> > > >> >> >For information about the CHARGE Syndrome > >> >> >Foundation or to become a member (and get the newsletter) > >> >> >please contact marion@... or visit > >> >> >the CHARGE Syndrome Foundation web page > >> >> >at http://www.chargesyndrome.org > >> >> > > >> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2001 Report Share Posted March 2, 2001 Jill, An Echo is an ultrasound of the heart. They just lie on a table (Wyatt got to watch a movie:) and have it done. (Just like for Pregnancy:) Hope all goes well with Kayla!!! Strom --- jill wrote: > Kayla has an appt with her peds doc. next week, I > will bring this up then > thanks for letting me know, they said the murmmer is > innocent whatever that > means. And yes i dont need any surprises later on. > Is the echo alot involved > or just the simple procedure of hooking up all the > wires as in other heart > tests? Jill > Re: RE: reflux > > > >Jill, > >Not to scare you but Jillian's had 3 heart defects > found later after being > >cleared from the cardiologist 3 times never having > to go back again and now > >she may need heart surgery!!! So just the simpple > fact that Kayla has > CHARGE > >is reason enough to get a very thorough echo... You > don't want any > surprises > >in the future. The murmur must come from > something????? > > Foley > > Re: RE: reflux > >> >> >> > >> >> >> > >> >> >> >Saleah is also having this problem in the > mornings (mostly). She > >had > >> >a > >> >> >> >swallow study done at about 10 months old > and they said she was > >o.k. > >> >so > >> >> >> they > >> >> >> >took her g-tube out. Now I had her tested > again about a month ago > >> and > >> >> >they > >> >> >> >told me that she has reflux quite bad. Is > this something that > >comes > >> >and > >> >> >> >goes. She had it when she was born, then > they said it was gone, > >now > >> >> it's > >> >> >> >back??? I had her tested again because > for 2 months she would > >cough > >> >and > >> >> >> >cough and cough until she threw up. It > was horrible. At first I > >> >though > >> >> >it > >> >> >> >had something to do with the fact that she > had her tonsils and > >> adnoids > >> >> >> taken > >> >> >> >out (it started within a few days of that > surgery), but the docs > >say > >> >no. > >> >> >> So, > >> >> >> >she is now taking Zantac and Reglan 3 > times a day and it is > helping > >> >> some, > >> >> >> but > >> >> >> >mornings are still horrible. The second > she wakes up she starts > >> >> coughing > >> >> >> and > >> >> >> >doesn't stop until she gags and gets the > dry heaves or if she's > >drank > >> >> >> >anything in the night, she throws up. > It's a horrible way to wake > >up > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2001 Report Share Posted March 2, 2001 Jill, An Echo is an ultrasound of the heart. They just lie on a table (Wyatt got to watch a movie:) and have it done. (Just like for Pregnancy:) Hope all goes well with Kayla!!! Strom --- jill wrote: > Kayla has an appt with her peds doc. next week, I > will bring this up then > thanks for letting me know, they said the murmmer is > innocent whatever that > means. And yes i dont need any surprises later on. > Is the echo alot involved > or just the simple procedure of hooking up all the > wires as in other heart > tests? Jill > Re: RE: reflux > > > >Jill, > >Not to scare you but Jillian's had 3 heart defects > found later after being > >cleared from the cardiologist 3 times never having > to go back again and now > >she may need heart surgery!!! So just the simpple > fact that Kayla has > CHARGE > >is reason enough to get a very thorough echo... You > don't want any > surprises > >in the future. The murmur must come from > something????? > > Foley > > Re: RE: reflux > >> >> >> > >> >> >> > >> >> >> >Saleah is also having this problem in the > mornings (mostly). She > >had > >> >a > >> >> >> >swallow study done at about 10 months old > and they said she was > >o.k. > >> >so > >> >> >> they > >> >> >> >took her g-tube out. Now I had her tested > again about a month ago > >> and > >> >> >they > >> >> >> >told me that she has reflux quite bad. Is > this something that > >comes > >> >and > >> >> >> >goes. She had it when she was born, then > they said it was gone, > >now > >> >> it's > >> >> >> >back??? I had her tested again because > for 2 months she would > >cough > >> >and > >> >> >> >cough and cough until she threw up. It > was horrible. At first I > >> >though > >> >> >it > >> >> >> >had something to do with the fact that she > had her tonsils and > >> adnoids > >> >> >> taken > >> >> >> >out (it started within a few days of that > surgery), but the docs > >say > >> >no. > >> >> >> So, > >> >> >> >she is now taking Zantac and Reglan 3 > times a day and it is > helping > >> >> some, > >> >> >> but > >> >> >> >mornings are still horrible. The second > she wakes up she starts > >> >> coughing > >> >> >> and > >> >> >> >doesn't stop until she gags and gets the > dry heaves or if she's > >drank > >> >> >> >anything in the night, she throws up. > It's a horrible way to wake > >up > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2001 Report Share Posted March 5, 2001 Jill, An echo is like an ultrasound. Just a little jelly on the chest and they rub that thing on it. Foley Re: RE: reflux > >> >> >> > >> >> >> > >> >> >> >Saleah is also having this problem in the mornings (mostly). She > >had > >> >a > >> >> >> >swallow study done at about 10 months old and they said she was > >o.k. > >> >so > >> >> >> they > >> >> >> >took her g-tube out. Now I had her tested again about a month ago > >> and > >> >> >they > >> >> >> >told me that she has reflux quite bad. Is this something that > >comes > >> >and > >> >> >> >goes. She had it when she was born, then they said it was gone, > >now > >> >> it's > >> >> >> >back??? I had her tested again because for 2 months she would > >cough > >> >and > >> >> >> >cough and cough until she threw up. It was horrible. At first I > >> >though > >> >> >it > >> >> >> >had something to do with the fact that she had her tonsils and > >> adnoids > >> >> >> taken > >> >> >> >out (it started within a few days of that surgery), but the docs > >say > >> >no. > >> >> >> So, > >> >> >> >she is now taking Zantac and Reglan 3 times a day and it is > helping > >> >> some, > >> >> >> but > >> >> >> >mornings are still horrible. The second she wakes up she starts > >> >> coughing > >> >> >> and > >> >> >> >doesn't stop until she gags and gets the dry heaves or if she's > >drank > >> >> >> >anything in the night, she throws up. It's a horrible way to wake > >up > >> >> >every > >> >> >> >morning. She will also still cough during the day (once in a > >while) > >> >> >until > >> >> >> >she throws up. > >> >> >> > > >> >> >> >I feel like I'm going crazy sometimes, but I'm glad to know I'm > not > >> >the > >> >> >> only > >> >> >> >one... > >> >> >> > > >> >> >> >Kim > >> >> >> >mom to Devin 10 yrs. and Saleah 2 1/2 yrs. (CHARGE) > >> >> >> > > >> >> >> > > >> >> >> > " 5th International CHARGE Syndrome Conference, Indianapolis, > >Indiana, > >> >> >July > >> >> >> >20-22, 2001. Information will be available first in CHARGE > >Accounts, > >> >the > >> >> >> >CHARGE Syndrome Foundation's newsletter. " > >> >> >> > > >> >> >> >For information about the CHARGE Syndrome > >> >> >> >Foundation or to become a member (and get the newsletter) > >> >> >> >please contact marion@... or visit > >> >> >> >the CHARGE Syndrome Foundation web page > >> >> >> >at http://www.chargesyndrome.org > >> >> >> > > >> >> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2001 Report Share Posted March 26, 2001 She was on Reglan for about 2 years. Which helped a great deal. She eventually outgrew the need for it (YEAH !!) Slowly, we just kept weening her from it and she did well. She also had a constriction at her TE fistual repair site which caused problems when she finally started eating solid foods. In fact, she would not eat any solids until the drs. intervened (probed the site and opened it back up) it was as though she knew bcause right after that she would eat just about anything. We had to have to probes done 1/month for about 5 months. Knock on wood, haven't had the need to go back in about 2 years. reflux Juli Is she on any reflux drugs? That would really help. We would either feed Caitlyn in her bouncy chair, or on the couch with the cushion propped up, or in the stoller. We also had a walker that had wheels that locked--kind of like an exersaucer. We used that too and had toys on the tray. Jeanne __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2001 Report Share Posted April 1, 2001 Ken, Does have a fundoplication? That worked wonders for us, I am a fan of them, although I have heard where some of them fail. Also, Kennedy is on a formula called "Vivonex Pediatric" which is actually for kids with bowel problems, etc and it's already broken down some, it's milk free as well and very easy to tolerate. It might be something to ask your nutritionist about. Reflux has been one of the worst things about having a child with CHARGE that we had to experience, I know how awful it is and how guilty you feel putting that food into them. I hope you come to some kind of a resolution soon. On a bright note, some of the kids a little older, a year and a half, 2 years can outgrow the reflux as well so he just may "outgrow" it. But, I think with a lot of CHARGErs, it's nerve-related so they won't "outgrow" it. Keep us posted Ken... Mom to Kennedy 3yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476 reflux is a year old now, and was on Enfamil 24 calorieformula. Still G-tube fed, He goes through spells ofconstant reflux, then won't spit up at all for a fewdays, then reflux again. His nutritionist switchedhim to Pediasure and he isn't handling it very well,but didn't have great luck with Enfamil either. Yes,we give him Zantac, and Reglan. We have to suctionhim constantly. He has already had a soft palaterepair. Does anyone have any ideas or stories oranything that I might be able to use? Poor littleguy, I feel guilty everytime I eat. How many otherpeople get mad at God sometimes? I know I shouldn'tbut I am only human, and I get reminded of that daily.Ken__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2001 Report Share Posted April 2, 2001 > >Reply-To: CHARGE >To: CHARGE SYNDROME <CHARGE > >Subject: reflux >Date: Sun, 1 Apr 2001 11:05:02 -0700 (PDT) > > is a year old now, and was on Enfamil 24 calorie >formula. Still G-tube fed, He goes through spells of >constant reflux, then won't spit up at all for a few >days, then reflux again. His nutritionist switched >him to Pediasure and he isn't handling it very well, >but didn't have great luck with Enfamil either. Yes, >we give him Zantac, and Reglan. We have to suction >him constantly. He has already had a soft palate >repair. Does anyone have any ideas or stories or >anything that I might be able to use? Poor little >guy, I feel guilty everytime I eat. How many other >people get mad at God sometimes? I know I shouldn't >but I am only human, and I get reminded of that daily. > >Ken > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2001 Report Share Posted April 2, 2001 Another thing that many people have found helpful with reflux with a child feeding by tube is to change them from a " formula " diet to a " blended " diet of regular foods. The foods are blenderized and put into the tube. Some people use exclusively a blenderized diet. Others use a combination of the formula and the blenderized diet. I am on another list for people with g-tubes. It is mostly parents of kids with tubes on the list. Some of those folks have tons of exerience with blended diets. I don't. If you want to check it out go to: http://www.gtube.org for list information. -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2001 Report Share Posted April 2, 2001 , That is what we feed Kennedy, blenderized meat, veggies & fruit and her Vivonex formula! I think it's great... Mom to Kennedy 3yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476 Re: Re: reflux Another thing that many people have found helpful with reflux with a childfeeding by tube is to change them from a "formula" diet to a "blended" dietof regular foods. The foods are blenderized and put into the tube. Somepeople use exclusively a blenderized diet. Others use a combination of theformula and the blenderized diet. I am on another list for people withg-tubes. It is mostly parents of kids with tubes on the list. Some ofthose folks have tons of exerience with blended diets. I don't. If youwant to check it out go to: http://www.gtube.org for list information.--"5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2001 Report Share Posted April 2, 2001 Hello Ken, It is really upsetting when the multitude of issues with CHARGE keep popping up. Believe me, I know how hard this can be. Regarding your reflux question, I wanted to let you know that at least for our daughter there was no way she could tolerate either Enfamil or Pediasure. She became unable to process breast milk at 4 months of age. We knew this because of severe diarrhea, reflux and bleeding in her stomach. She could not tolerate any formulas. She was put on a specialized formula, Pregestemil and it was one of the things I am sure has been critical for her survival. It is a formula that is completely broken down and the child does not need to work hard to digest it. 'Predigested' is what is important to this formula. The amino acids are already accessible to the child without further digestion due to the makeup of the formula. It was available at our local grocery store. However, it did not stop the reflux and she required a fundoplication. There are several other similar " predigested' or otherwise easily digested formulas available ('s Kennedy has benefitted from one with a different name and some other children have outgrown reflux.). Perhaps trying one of these formulas could be helpful at this point. I would want to try these possibilities before looking at a fundoplication. I would love to see research into what makes the digestion so hard and/or what makes reflux so common and difficult with many CHARGE babies. The reflux probably comes from a variety of structural and tone issues. It seems quite difficult to stop in many cases because the body doesn't know how to process the food with peristalsis correctly. Mom to Kendra, 14, , 20 and Camille, 23 At 11:05 AM 4/1/01 -0700, you wrote: > is a year old now, and was on Enfamil 24 calorie >formula. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2001 Report Share Posted April 2, 2001 Thanks for the responses. i print these out and take them to his pediatrician and nutritionists. Ken --- Keedy wrote: > Hello Ken, > > It is really upsetting when the multitude of issues > with CHARGE keep > popping up. Believe me, I know how hard this can > be. Regarding your > reflux question, I wanted to let you know that at > least for our daughter > there was no way she could tolerate either Enfamil > or Pediasure. She > became unable to process breast milk at 4 months of > age. We knew this > because of severe diarrhea, reflux and bleeding in > her stomach. She could > not tolerate any formulas. She was put on a > specialized formula, > Pregestemil and it was one of the things I am sure > has been critical for > her survival. It is a formula that is completely > broken down and the child > does not need to work hard to digest it. > 'Predigested' is what is > important to this formula. The amino acids are > already accessible to the > child without further digestion due to the makeup of > the formula. It was > available at our local grocery store. However, it > did not stop the reflux > and she required a fundoplication. > > There are several other similar " predigested' or > otherwise easily digested > formulas available ('s Kennedy has benefitted > from one with a different > name and some other children have outgrown reflux.). > Perhaps trying one of > these formulas could be helpful at this point. I > would want to try these > possibilities before looking at a fundoplication. > > I would love to see research into what makes the > digestion so hard and/or > what makes reflux so common and difficult with many > CHARGE babies. The > reflux probably comes from a variety of structural > and tone issues. It > seems quite difficult to stop in many cases because > the body doesn't know > how to process the food with peristalsis correctly. > > > Mom to Kendra, 14, , 20 and Camille, 23 > At 11:05 AM 4/1/01 -0700, you wrote: > > is a year old now, and was on Enfamil 24 > calorie > >formula. > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2001 Report Share Posted April 2, 2001 Ken- My grandson had a nissen done at 2 weeks. The surgery consist of taking the top part of the stomach and wrapping it around the end of the esophagus to prevent reflux and aspiration. It has prevented some of the reflux but not all--He is on Zantac twice a day. The trick with Josh is to feed slow. Needless to say, he hasn't had pneumonia. But we have had other problems. GI bleed not related to the surgery caused changes of formulas until we got it right. Just putting on weight is the problem. Josh still acts like he strangles at times when he's fed too soon. Josh is on Nutramangen with polycose for extra calories. Josh only weighs 13 1/2 lbs. He now has two teeth, is rolling over, attempting to sit up. and scoots on him back to get around the floor. We are so proud of him. I would suggest the nissen to anyone!!! Iris, mom and grandmom of Chargers--Kriste, age 28 and her son Josh age 10 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2001 Report Share Posted April 2, 2001 Ken, I thought the same thing about not putting Bryce through another surgery to have the nisssan, but after having one at 15 months, his day to day life improved significantly. I wished I had done it sooner. Just my experience. It is so hard to know what is best for these kids sometimes. Even the doctors don't often know. Deedee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2001 Report Share Posted April 2, 2001 I have heard of that, but I heard it called a necin. I would hate to have him go through more surgeries. Thanks. Ken --- Graeme & Weir wrote: > Ken, > A fundoplication is where they take the top of the > stomach and " wrap " it closed, so nothing can come > up. When the child needs to throw up, you open > their g tube or button and let it come out that way. > We are very happy with our decision to have a fundo > done on Kennedy at 6 months of age. Reflux was > awful, and I believe our decision to do it prevented > numerous aspiration pneumonias. > Here are a couple of websites you might want to > check out: > http://www.tofs.ndirect.co.uk/info_leaflets_nissen.htm > http://www.surgeonsgroup.com/nissen.htm > > Mom to Kennedy 3yr old CHARGEr, 11, 9, and > wife to Graeme > New Brunswick, Canada > Visit the " Weir homepage " at: > http://www.geocities.com/SunsetStrip/Palms/5716 > ICQ #1426476 > > reflux > > > > > > is a year old now, and was on Enfamil 24 > > calorie > > formula. Still G-tube fed, He goes through > spells > > of > > constant reflux, then won't spit up at all for > a > > few > > days, then reflux again. His nutritionist > > switched > > him to Pediasure and he isn't handling it very > > well, > > but didn't have great luck with Enfamil > either. > > Yes, > > we give him Zantac, and Reglan. We have to > > suction > > him constantly. He has already had a soft > palate > > repair. Does anyone have any ideas or stories > or > > anything that I might be able to use? Poor > little > > guy, I feel guilty everytime I eat. How many > > other > > people get mad at God sometimes? I know I > > shouldn't > > but I am only human, and I get reminded of > that > > daily. > > > > Ken > > > > > __________________________________________________ > > 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.