Guest guest Posted November 3, 2004 Report Share Posted November 3, 2004 Hello everyone! I do read most of the posts and find the group usefull. I dont post very often as mine is not good news. I would like to share my situation with you in the hope someone might have some ideas. I seem to have hit a brick wall, their must be something we can do to help my daughter Jasmine she is 9. Jasmines has had achalasia since she was 6 1/2 . She had a dilatation then a lap Heller in London UK, then another dilatation then an adhesiosis then another dilatation then another dilatation. The last thing was a manometry (lovely) which revealed no narrowing but no motility either virtually none! Jasmine takes omeprazole and gaviscon at night. Every day is a nightmare. It takes Jasmine hours to eat small amounts of soft food. She does have a meal replacement drink (half a sachet with milk) I do monitor and control her fluid intake with co-operation from the school. We do prepare and send her school dinners as she cant eat school diners. I am really struggling and scared to death about what happens now. Our consultant said we try motillion, but I haven't managed a full day of 3 x 12ml, I cant phisically get food drink and all that medicine into her unless she stays home from school, and any way who wants to spend every waking moment trying to get the food from your mouth to your stomach. We have 2 trampolines, 1 big one outdoors and a trampet in the lounge, jasmine has to bounce after every mouthful. Any way I think the motillion is making her worse as she is regurgitating frequently. I have stopped it and asked my consultant to phone me to talk about what's going on. Jasmine is a smashing girl, she never complains and is generally happy and busy. Georgia is jasmines 6 year old sister. She is very kind and helpful, she just adores her sister. This thing affects the whole family, its incredibly difficult to watch your child suffer like this. has anyone had experience with doperidone motillium? has any one tried any alternatives like a naturopath? has anyone got any ideas about how we can help Jasmine? look forward to any responses! Tamworth, UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2004 Report Share Posted November 4, 2004 , I am so sorry to hear that Jasmine is still having problems. We had not heard from you in so long, I thought her myotomy had been successful. I don't recall anyone on this board mention the use of doperidone motillium. I don't believe that it is an approved drug in the USA, but I could be wrong. If you go here you will find several articles listed: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=Pager & DB=pubmed You might be able to find some information here that would be helpful to you. Please keep us up to date on Jasmine's progress. We care, Maggie Alabama Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2004 Report Share Posted November 4, 2004 Hi - I am almost in tears thinking about what you are going through. I've always said for as bad as A can be for me, it would devastate me to see my daughters - or anyone else go through it. Ugh!! I have some notes and ideas below... > > I am really struggling and scared to death about what happens now. Our consultant said we try motillion, Maybe we don't have this in the US - what is motillion?? going out on a limb, is it some kind of motility drug? The docs prescribed one for me for years in the beginning but I took myself off of them because the increase in motility was causing my spasms and swallowing to be worse! > > has anyone had experience with doperidone motillium? > has any one tried any alternatives like a naturopath? I have tried a few herbal and alternative remedies that I find helps. If you have a knowledgeable herbalist - they can probably help. There is an herb called scullcap that I make into a tea, it is a mild muscle relaxant that I drink when I'm having spasms but I would imagine it would help relax the muscles for swallowing also. I also have taken Magnesium in the past - it's another muscle relaxant. There is a powder magnesium supplement that you mix with water and drink that I just heard about called Natural Calm, I googled it and found several websites that carried it (even one in the UK I think). They even had one that was supposed to be formulated for kids. Obviously, you should check with a knowledgable herbalist or someone on what is safe to use for kids. The one thing I would REALLY recommend is acupuncture. I did 6-8 sessions about 3 years ago and have felt my best ever since. I'm not " normal " but I swallow well and my spasms have reduced and are more easily treatable. I hope something helps. Keep digging for the right answers for her. I'm glad this site is here for you to get some suggestions from. Give Jasmine lots of hugs - tell her she's not alone and we will all be thinking of her and wishing her Happy Swallowing!! - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2004 Report Share Posted November 4, 2004 Hello I am so sorry to hear what a difficult time your daughter is having. I was prescribed domperidone early on to see if it would help move things down. My doctor told me that it would either be helpful within two weeks or it would noticeably NOT work and I should stop it. I took it for the 2 weeks and I found I had a very sore throat and I was regurgitating very vigorously, most unpleasant. Laughing hurt my throat very much. In my lay language I thought that the drug was stimulating the muscles in my esophagus but since the food could not get through the LES it was then reversing and sending it back up even more strongly than before. I stopped taking it. Liz > Hello everyone! > > I do read most of the posts and find the group usefull. I dont post very often as mine is not good news. > > I would like to share my situation with you in the hope someone might have some ideas. I seem to have hit a brick wall, their must be something we can do to help my daughter Jasmine she is 9. > > Jasmines has had achalasia since she was 6 1/2 . She had a dilatation then a lap Heller in London UK, then another dilatation then an adhesiosis then another dilatation then another dilatation. The last thing was a manometry (lovely) which revealed no narrowing but no motility either virtually none! > > Jasmine takes omeprazole and gaviscon at night. Every day is a nightmare. It takes Jasmine hours to eat small amounts of soft food. She does have a meal replacement drink (half a sachet with milk) I do monitor and control her fluid intake with co-operation from the school. We do prepare and send her school dinners as she cant eat school diners. > > I am really struggling and scared to death about what happens now. Our consultant said we try motillion, but I haven't managed a full day of 3 x 12ml, I cant phisically get food drink and all that medicine into her unless she stays home from school, and any way who wants to spend every waking moment trying to get the food from your mouth to your stomach. We have 2 trampolines, 1 big one outdoors and a trampet in the lounge, jasmine has to bounce after every mouthful. > > Any way I think the motillion is making her worse as she is regurgitating frequently. I have stopped it and asked my consultant to phone me to talk about what's going on. > > Jasmine is a smashing girl, she never complains and is generally happy and busy. Georgia is jasmines 6 year old sister. She is very kind and helpful, she just adores her sister. This thing affects the whole family, its incredibly difficult to watch your child suffer like this. > > has anyone had experience with doperidone motillium? > has any one tried any alternatives like a naturopath? > has anyone got any ideas about how we can help Jasmine? > > look forward to any responses! > > > Tamworth, UK Quote Link to comment Share on other sites More sharing options...
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