Guest guest Posted May 1, 2002 Report Share Posted May 1, 2002 Just want make everyone aware of the dangers of the following drug. My stepdaughter was on it for over a year until WE (her parents) discovered the dangers of it and took her off. Her doctor had no idea and I am guessing still prescribes it today. Needless to say that he is no longer her G.I. doctor. I am very disapointed with the G.I. doctors we have dealt with although her pulmonary doctors are great. Well today in clinic they found her to have an irregular heartbeat with an irregularity. Most times it is a regular heartbeat with and irregularity. She went for and EKG today and we will follow up with a cardiologist! It makes me so mad to think her doctor put her life in danger needlessly. The drug didn't even work, it was prescribed for her G.I. problems to keep everything moving through her with absolutely no good results! This post is meant to urge all parents to really research all the drugs doctors put your children on! Propulsid (Cisapride) may cause irregular heartbeats and even sudden death. At least 341 reports of heart-rhythm abnormalities, including 80 reports of deaths, have been associated with Propulsid. Although the FDA first warned that Propulsid can cause serious heart problems in June 1998, reports of deaths and hospitalizations have continued to mount. Becky (stepmom to Sarine 8 1/2 w/cf) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2002 Report Share Posted May 2, 2002 FYI- Our CF doc at Children's Hosp of Phila said propulsid is a very effective drug but that before it is prescribed, the patient should have an EKG to ensure they are no irregularities. If the EKG is normal to start with, then the drug is OK to take. However, there is so much extra paperwork involved in giving a patient this drug, they have stopped prescribing it. Our doctor seemed disappointed that we don't have the opportunity to try this drug. Emma (my 7 month old) is on Reglan, Bethanacol and Prilosec for her reflux and even this combo doesn't work 100%. The reflux is more problematic for us than the CF at this point. Can anyone tell me how long to expect the reflux to last. I've been advised that most kids grow out of it by 1-2 years of age but so many of the kids I'm reading about seem to be on GI meds. Jen, mom to Emma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2002 Report Share Posted May 2, 2002 Hi Becky, You are absolutely right to aware parents from those drugs. I'll take the opportunity to talk about a medication that a lot of this group know: " Flovent " . My son , 13 years old, used to take from 2 to 4 puffs per day for about 3 years till his doctor told us to stop it, last year. A couple of weeks after we stopped giving him Flovent, began to swell and had a hard time to stay awake during 4 hours per day. He couldn't eat because too tired and had some hair growing on his back and elsewhere it shouldn't. It took a while for doctors to know what was going on. One of them suspected some glands problems. An endocrinologist then discovered that had a severe adrenal glands problem caused by Flovent. The cortisone in this medication can be dangerous in a long term use. only grew up of 2 cm. in 2 years because of cortisone. Doctors can't tell us whether will catch up with his growing. Since then our CF clinic verified every cases and doctors do not prescribe Flovent as easy anymore. Thank you, from Montreal > >Reply-To: cfparents >To: cfparents >Subject: Propulsid (Cisapride) >Date: Wed, 01 May 2002 21:18:41 -0000 > >Just want make everyone aware of the dangers of the following drug. >My stepdaughter was on it for over a year until WE (her parents) >discovered the dangers of it and took her off. Her doctor had no idea >and I am guessing still prescribes it today. Needless to say that he >is no longer her G.I. doctor. I am very disapointed with the G.I. >doctors we have dealt with although her pulmonary doctors are great. >Well today in clinic they found her to have an irregular heartbeat >with an irregularity. Most times it is a regular heartbeat with and >irregularity. She went for and EKG today and we will follow up with a >cardiologist! It makes me so mad to think her doctor put her life in >danger needlessly. The drug didn't even work, it was prescribed for >her G.I. problems to keep everything moving through her with >absolutely no good results! This post is meant to urge all parents to >really research all the drugs doctors put your children on! > > >Propulsid (Cisapride) may cause irregular heartbeats and even sudden >death. At least 341 reports of heart-rhythm abnormalities, including >80 reports of deaths, have been associated with Propulsid. Although >the FDA first warned that Propulsid can cause serious heart problems >in June 1998, reports of deaths and hospitalizations have continued >to mount. > >Becky (stepmom to Sarine 8 1/2 w/cf) > > _________________________________________________________________ Envoyez et recevez des messages Hotmail sur votre périphérique mobile : http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2002 Report Share Posted May 2, 2002 Hi Becky, I thought they took propulsid off the market! My GI doctor wouldn't prescribe it for the twins despite their severe reflux, because of the risks associated with it, and my pulmonary doc said you couldn't even get it anymore unless you went to Mexico. Are you here in the US, or another country where it is still on the market? C Mommy to Mick and Alli, 2 yo twins wcf --- BeckAccord BeckAccord@...> wrote: > Just want make everyone aware of the dangers of the > following drug. > My stepdaughter was on it for over a year until WE > (her parents) > discovered the dangers of it and took her off. Her > doctor had no idea > and I am guessing still prescribes it today. > Needless to say that he > is no longer her G.I. doctor. I am very disapointed > with the G.I. > doctors we have dealt with although her pulmonary > doctors are great. > Well today in clinic they found her to have an > irregular heartbeat > with an irregularity. Most times it is a regular > heartbeat with and > irregularity. She went for and EKG today and we will > follow up with a > cardiologist! It makes me so mad to think her doctor > put her life in > danger needlessly. The drug didn't even work, it was > prescribed for > her G.I. problems to keep everything moving through > her with > absolutely no good results! This post is meant to > urge all parents to > really research all the drugs doctors put your > children on! > > > Propulsid (Cisapride) may cause irregular heartbeats > and even sudden > death. At least 341 reports of heart-rhythm > abnormalities, including > 80 reports of deaths, have been associated with > Propulsid. Although > the FDA first warned that Propulsid can cause > serious heart problems > in June 1998, reports of deaths and hospitalizations > have continued > to mount. > > Becky (stepmom to Sarine 8 1/2 w/cf) > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2002 Report Share Posted May 3, 2002 Hi , My twins take four puffs of flovent every day - 2 in the morning and 2 at night. I haven't noticed any unusual hair growth, but he certainly is shorter than is normal. I'll be sure to ask his pulmonologist about this. Thanks! C Mommy to Mick and Alli, 2 yo twins wcf --- Bishop coccinelle152@...> wrote: > Hi Becky, > > You are absolutely right to aware parents from > those drugs. I'll take > the opportunity to talk about a medication that a > lot of this group know: > " Flovent " . My son , 13 years old, used to take > from 2 to 4 puffs per > day for about 3 years till his doctor told us to > stop it, last year. A > couple of weeks after we stopped giving him Flovent, > began to swell > and had a hard time to stay awake during 4 hours per > day. He couldn't eat > because too tired and had some hair growing on his > back and elsewhere it > shouldn't. It took a while for doctors to know what > was going on. One of > them suspected some glands problems. An > endocrinologist then discovered > that had a severe adrenal glands problem > caused by Flovent. The > cortisone in this medication can be dangerous in a > long term use. only > grew up of 2 cm. in 2 years because of cortisone. > Doctors can't tell us > whether will catch up with his growing. Since > then our CF clinic > verified every cases and doctors do not prescribe > Flovent as easy anymore. > > Thank you, > from Montreal > > > > >Reply-To: cfparents > >To: cfparents > >Subject: Propulsid (Cisapride) > >Date: Wed, 01 May 2002 21:18:41 -0000 > > > >Just want make everyone aware of the dangers of the > following drug. > >My stepdaughter was on it for over a year until WE > (her parents) > >discovered the dangers of it and took her off. Her > doctor had no idea > >and I am guessing still prescribes it today. > Needless to say that he > >is no longer her G.I. doctor. I am very disapointed > with the G.I. > >doctors we have dealt with although her pulmonary > doctors are great. > >Well today in clinic they found her to have an > irregular heartbeat > >with an irregularity. Most times it is a regular > heartbeat with and > >irregularity. She went for and EKG today and we > will follow up with a > >cardiologist! It makes me so mad to think her > doctor put her life in > >danger needlessly. The drug didn't even work, it > was prescribed for > >her G.I. problems to keep everything moving through > her with > >absolutely no good results! This post is meant to > urge all parents to > >really research all the drugs doctors put your > children on! > > > > > >Propulsid (Cisapride) may cause irregular > heartbeats and even sudden > >death. At least 341 reports of heart-rhythm > abnormalities, including > >80 reports of deaths, have been associated with > Propulsid. Although > >the FDA first warned that Propulsid can cause > serious heart problems > >in June 1998, reports of deaths and > hospitalizations have continued > >to mount. > > > >Becky (stepmom to Sarine 8 1/2 w/cf) > > > > > > > > > _________________________________________________________________ > Envoyez et recevez des messages Hotmail sur votre > périphérique mobile : > http://mobile.msn.com > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2002 Report Share Posted May 3, 2002 , I know it's still prescribed in Australia. Re: Propulsid (Cisapride) > Hi Becky, > > I thought they took propulsid off the market! My > GI doctor wouldn't prescribe it for the twins > despite their severe reflux, because of the risks > associated with it, and my pulmonary doc said > you couldn't even get it anymore unless you went to > Mexico. Are you here in the US, or another country > where it is still on the market? > > C > Mommy to Mick and Alli, 2 yo twins wcf > > --- BeckAccord BeckAccord@...> wrote: > > Just want make everyone aware of the dangers of the > > following drug. > > My stepdaughter was on it for over a year until WE > > (her parents) > > discovered the dangers of it and took her off. Her > > doctor had no idea > > and I am guessing still prescribes it today. > > Needless to say that he > > is no longer her G.I. doctor. I am very disapointed > > with the G.I. > > doctors we have dealt with although her pulmonary > > doctors are great. > > Well today in clinic they found her to have an > > irregular heartbeat > > with an irregularity. Most times it is a regular > > heartbeat with and > > irregularity. She went for and EKG today and we will > > follow up with a > > cardiologist! It makes me so mad to think her doctor > > put her life in > > danger needlessly. The drug didn't even work, it was > > prescribed for > > her G.I. problems to keep everything moving through > > her with > > absolutely no good results! This post is meant to > > urge all parents to > > really research all the drugs doctors put your > > children on! > > > > > > Propulsid (Cisapride) may cause irregular heartbeats > > and even sudden > > death. At least 341 reports of heart-rhythm > > abnormalities, including > > 80 reports of deaths, have been associated with > > Propulsid. Although > > the FDA first warned that Propulsid can cause > > serious heart problems > > in June 1998, reports of deaths and hospitalizations > > have continued > > to mount. > > > > Becky (stepmom to Sarine 8 1/2 w/cf) > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2002 Report Share Posted May 3, 2002 What kind of formula do you have her on? The reson I ask is that some kids are allergic to some formula ingrediants. When Patti was having this trouble we searched the back of formula cans and they all had this one particular ingrediant in common, except the lacto-free. I wish I could remember what it was, it has been to long. Any way we fought to have Patti taken off of pregestimil and put on the lacto free because of this and because we suspected that she might be lactose intollerant. In any event two days after we switched her reflux was able to be completly controlled by the medicine. I have seen this over and over with babies of freinds of mine. They have bad reflux and or colic and they switch to the lacto free and it goes away or is greatly diminished. May it would work for your Emma. Dawn mom of 4, 6 and under, the youngest wcf --- JenCFList@... wrote: > FYI- Our CF doc at Children's Hosp of Phila said > propulsid is a very > effective drug but that before it is prescribed, the > patient should have an > EKG to ensure they are no irregularities. If the > EKG is normal to start > with, then the drug is OK to take. However, there > is so much extra paperwork > involved in giving a patient this drug, they have > stopped prescribing it. > Our doctor seemed disappointed that we don't have > the opportunity to try this > drug. Emma (my 7 month old) is on Reglan, > Bethanacol and Prilosec for her > reflux and even this combo doesn't work 100%. The > reflux is more problematic > for us than the CF at this point. > Can anyone tell me how long to expect the reflux > to last. I've been > advised that most kids grow out of it by 1-2 years > of age but so many of the > kids I'm reading about seem to be on GI meds. > Jen, mom to Emma > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2002 Report Share Posted May 3, 2002 That's exactly what our CF GI doc said also. He also said it was a wonder drug that would cure all of her problems. What he DIDN'T say was that the side effects were irregular heart beats and SUDDEN DEATH. To me, death isn't neccesarily a " side effect " it's a bit more permanent and irreversable. I am guessing that it involves so much extra paperwork because there are so many lawsuits attributed to the drug as a result of irreversable heart damage and death. Even if it was easy to get and still prescribed why would you ever put the lives of your children in such danger. I know all drugs have side effects but heart damage and death are much easier to weigh against the effectiveness of the drug. Becky (stepmom to Sarine 8 1/2 w/cf) > FYI- Our CF doc at Children's Hosp of Phila said propulsid is a very > effective drug but that before it is prescribed, the patient should have an > EKG to ensure they are no irregularities. If the EKG is normal to start > with, then the drug is OK to take. However, there is so much extra paperwork > involved in giving a patient this drug, they have stopped prescribing it. > Our doctor seemed disappointed that we don't have the opportunity to try this > drug. Emma (my 7 month old) is on Reglan, Bethanacol and Prilosec for her > reflux and even this combo doesn't work 100%. The reflux is more problematic > for us than the CF at this point. > Can anyone tell me how long to expect the reflux to last. I've been > advised that most kids grow out of it by 1-2 years of age but so many of the > kids I'm reading about seem to be on GI meds. > Jen, mom to Emma > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2002 Report Share Posted May 3, 2002 Dawn - Thanks for the suggestion bu we tried the Lactose free and it didn't help. She is actually on a mixture of Pregestimil and Lactose free similac because she wouldn't take the Pregestimil by itself due to the yucky taste. She is doing better now that she in on the 3 reflux meds and tolerating her meals better, It makes us all a lot happier! Jen, mom to Emma, 7 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2002 Report Share Posted May 4, 2002 Hello , I'm sure that those side effects with Flovent do not occur in every cases. However, we had the chance to consult Dr. Perris, an endocrinologist from Scotland in visit in Montreal, who is the one who discovered the possible effects of cortisone on surenal glands, through studies. 's pulmologists didn't have a clue about what was going on and it took a while before they suspected a gland problem. They were not aware about the link between Flovent and surenal glands. Bye, bye, from Montreal > >Reply-To: cfparents >To: cfparents >Subject: Re: Propulsid (Cisapride) >Date: Thu, 2 May 2002 23:39:14 -0700 (PDT) > >Hi , > >My twins take four puffs of flovent every day - >2 in the morning and 2 at night. I haven't noticed >any unusual hair growth, but he certainly is shorter >than is normal. I'll be sure to ask his pulmonologist >about this. > >Thanks! > > C >Mommy to Mick and Alli, 2 yo twins wcf > >--- Bishop coccinelle152@...> >wrote: > > Hi Becky, > > > > You are absolutely right to aware parents from > > those drugs. I'll take > > the opportunity to talk about a medication that a > > lot of this group know: > > " Flovent " . My son , 13 years old, used to take > > from 2 to 4 puffs per > > day for about 3 years till his doctor told us to > > stop it, last year. A > > couple of weeks after we stopped giving him Flovent, > > began to swell > > and had a hard time to stay awake during 4 hours per > > day. He couldn't eat > > because too tired and had some hair growing on his > > back and elsewhere it > > shouldn't. It took a while for doctors to know what > > was going on. One of > > them suspected some glands problems. An > > endocrinologist then discovered > > that had a severe adrenal glands problem > > caused by Flovent. The > > cortisone in this medication can be dangerous in a > > long term use. only > > grew up of 2 cm. in 2 years because of cortisone. > > Doctors can't tell us > > whether will catch up with his growing. Since > > then our CF clinic > > verified every cases and doctors do not prescribe > > Flovent as easy anymore. > > > > Thank you, > > from Montreal > > > > > > > >Reply-To: cfparents > > >To: cfparents > > >Subject: Propulsid (Cisapride) > > >Date: Wed, 01 May 2002 21:18:41 -0000 > > > > > >Just want make everyone aware of the dangers of the > > following drug. > > >My stepdaughter was on it for over a year until WE > > (her parents) > > >discovered the dangers of it and took her off. Her > > doctor had no idea > > >and I am guessing still prescribes it today. > > Needless to say that he > > >is no longer her G.I. doctor. I am very disapointed > > with the G.I. > > >doctors we have dealt with although her pulmonary > > doctors are great. > > >Well today in clinic they found her to have an > > irregular heartbeat > > >with an irregularity. Most times it is a regular > > heartbeat with and > > >irregularity. She went for and EKG today and we > > will follow up with a > > >cardiologist! It makes me so mad to think her > > doctor put her life in > > >danger needlessly. The drug didn't even work, it > > was prescribed for > > >her G.I. problems to keep everything moving through > > her with > > >absolutely no good results! This post is meant to > > urge all parents to > > >really research all the drugs doctors put your > > children on! > > > > > > > > >Propulsid (Cisapride) may cause irregular > > heartbeats and even sudden > > >death. At least 341 reports of heart-rhythm > > abnormalities, including > > >80 reports of deaths, have been associated with > > Propulsid. Although > > >the FDA first warned that Propulsid can cause > > serious heart problems > > >in June 1998, reports of deaths and > > hospitalizations have continued > > >to mount. > > > > > >Becky (stepmom to Sarine 8 1/2 w/cf) > > > > > > > > > > > > > > > > >_________________________________________________________________ > > Envoyez et recevez des messages Hotmail sur votre > > périphérique mobile : > > http://mobile.msn.com > > > > > > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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