Guest guest Posted February 10, 2004 Report Share Posted February 10, 2004 , The medicine you are talking about is cisapride which is banned in the US except for compassionate cases (we have at least one here that I know of). However, it is acceptable abroad and I believe 's original post stated that Finlay is already on it. Judith, Steve, (RSS) and (non RSS) 4 year old twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2004 Report Share Posted February 10, 2004 , While what said was true, I do disagree with one thing. The medication to increase gastric emptying is Cisapride/Propulsid. It used to be approved here in the US, but it is no longer available except with compassionate clearance. There were some studies done that apparently showed that under certain circumstances that medication could affect the heart. Max was on Cisapride when he was under a year old. In fact, he was in a double blind study before it was approved by the FDA (Food and Drug Administration). He took that medication for years and then did not seem to need it anymore. There were no noticeable side effects other than it helping him feel more comfortable with eating and helping to control reflux because it increased the emptying speed of his stomach. Then a few years ago Max began to have terrible difficulty with GE again, so Dr. H. went through all the paperwork and red tape to get the medication for him and a few others. It has been a godsend. While Max still does have delayed GE and will need another study so that she can increase the dose (she needs permission from the FDA), we will not stop using that med unless absolutely necessary. It costs us nothing except testing on a regular basis. What testing is required? There is some bloodwork and he must have an EEG every other visit. There is also a list of medications he cannot take while on this med, one of them being Zoloft which was a medication that really helped his anxiety. But we have learned to live without it and use other methods instead. He also cannot eat grapefruit, which does not bother him, but it bothers me. I love grapefruit. I won't buy it, though, because I don't want to have it around here and then have Max be tempted to try some. We already are a milk-free household, so one less food makes no difference. The other thing I wanted to point out is that Dr. H. does use Barium when Max has the GE testing done. It is mixed in with some awful pineapple drink he has to consume. Usually she uses milk with Barium, or so she told us, but due to Max's allergy, it is not an option. The other thing that is sometimes used is scrambled eggs with Barium mixed in. Dr. H. will not allow that, though, because she says that these kids drink mostly liquids and liquids are more apt to show reflux if there are any episodes during the study. So, even if Finlay does have the delayed emptying, it really does not change anything unless you are going to have access to Cisapride/Propulsid and a doctor who is willing to prescribe it. I don't know if it is available in NZ or not. This dysmotility thing is such a worrisome thing and our kids get so uncomfortable from it and it affects so much of their lives. And, as said, it does not go away. In fact, for Max, it is worse. On a good note, however, since we have stuck to a totally milk free diet, Max is feeling MUCH better. The stomach pains are still there, but not as severe and he can put up with them without feeling like he cannot make it through the day. His hiccups are better, too. I guess between the diet change and the Transcop patch he wears behind his ear, we are on a roll!!! Jodi Z. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2004 Report Share Posted February 11, 2004 Thanks, , Judith and Jodi for your advice. Finlay is on cisapride - its available here on prescription - although he had to have an ECG before he started and our pharmacy ahve a list of the incompatible medications. The cisapride really does help with his vomiting - especially overnight. It will be really intersting to hear what Dr H has to say about the results of the DGE test. Finlay has a nissan and a g-tube but no pyloroplasty. Thanks again for your help New Zealand Finlay, 4, RSS, g-tube, cisapride > , > > While what said was true, I do disagree with one thing. > The medication to increase gastric emptying is Cisapride/Propulsid. > It used to be approved here in the US, but it is no longer available > except with compassionate clearance. There were some studies done > that apparently showed that under certain circumstances that > medication could affect the heart. > > Max was on Cisapride when he was under a year old. In fact, he was > in a double blind study before it was approved by the FDA (Food and > Drug Administration). He took that medication for years and then > did not seem to need it anymore. There were no noticeable side > effects other than it helping him feel more comfortable with eating > and helping to control reflux because it increased the emptying > speed of his stomach. Then a few years ago Max began to have > terrible difficulty with GE again, so Dr. H. went through all the > paperwork and red tape to get the medication for him and a few > others. It has been a godsend. While Max still does have delayed > GE and will need another study so that she can increase the dose > (she needs permission from the FDA), we will not stop using that med > unless absolutely necessary. It costs us nothing except testing on > a regular basis. > > What testing is required? There is some bloodwork and he must have > an EEG every other visit. There is also a list of medications he > cannot take while on this med, one of them being Zoloft which was a > medication that really helped his anxiety. But we have learned to > live without it and use other methods instead. He also cannot eat > grapefruit, which does not bother him, but it bothers me. I love > grapefruit. I won't buy it, though, because I don't want to have it > around here and then have Max be tempted to try some. We already > are a milk-free household, so one less food makes no difference. > > The other thing I wanted to point out is that Dr. H. does use Barium > when Max has the GE testing done. It is mixed in with some awful > pineapple drink he has to consume. Usually she uses milk with > Barium, or so she told us, but due to Max's allergy, it is not an > option. The other thing that is sometimes used is scrambled eggs > with Barium mixed in. Dr. H. will not allow that, though, because > she says that these kids drink mostly liquids and liquids are more > apt to show reflux if there are any episodes during the study. > > So, even if Finlay does have the delayed emptying, it really does > not change anything unless you are going to have access to > Cisapride/Propulsid and a doctor who is willing to prescribe it. I > don't know if it is available in NZ or not. This dysmotility thing > is such a worrisome thing and our kids get so uncomfortable from it > and it affects so much of their lives. And, as said, it > does not go away. In fact, for Max, it is worse. > > On a good note, however, since we have stuck to a totally milk free > diet, Max is feeling MUCH better. The stomach pains are still > there, but not as severe and he can put up with them without feeling > like he cannot make it through the day. His hiccups are better, > too. I guess between the diet change and the Transcop patch he > wears behind his ear, we are on a roll!!! > > Jodi Z. Quote Link to comment Share on other sites More sharing options...
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