Hi, my son is soon to be 13 yrs and is currently taking 20mg omeprazole daily. He was on reflux meds from a baby until about 3 yrs then taken off all meds. At 5 yrs he had a spell in hospital and was put back on ranitidine and domperidone he was on these for several years and I eventually requested a second opinion as they did not seem to be working effectively. About three years ago he was given omeprazole which greatly improved things. On the consultants recomendation we have recently tried reducing to 10mg but he found he was getting heartburn during the day so we increased it again to 20mg. He is also taking gaviscon most nights as the pain seems to come on about an hour after he goes to bed.
My question is are there many older children or adults still suffering with heartburn/reflux. I have been told over the years that as he gets older things will improve but as he is now almost 13 yrs i find this hard to believe. He is otherwise fit and healthy and dong well at school.
I look forward to reading your comments.

Heya Nicola,
       
My name is Shannon and I’m 15, don’t worry about the heartburn/reflux it is just all part of being a tof. I was on over 40mg of omeprazole but now my reflux/heartburn is barely there. It really does get better and of course there will be rough patches, there is no point lying about it, but it won’t be bad all of the time. If the gaviscon isn’t working effectively you might want to try peptac, personally I find it a wee bit better.

Don’t know if that helps or if you want to ask anything else just e-mail me. I really hope your son is doing well and that the hearburn/reflux eases up.

Shannon

Hi, the problem with the proton pump inhibitors (lansoprazole, omeprazole etc) is that they only suppress acid for a couple of hours. At the advice of my chest professor, I take lansoprazole 2x per day and ranitidine at night so I get acid suppression with each meal. It is part of being a TOF but I only get symptoms of heartburn etc now rarely and usually if I’ve overindulged. No drug can stop the reflux per se- they just make the reflux not acidic but this is enough to help. There are other drugs that can improve oesophageal movement too, I take azithromycin .

Hi
Cazztof Do you have oesomeparazole (Nexium) in the UK? I had a chat with an adult TOF and he told me that it has longer lasting effects on him than omeparazole. Just thought I’d throw that in, it’s always good to hear things from an adults perspective, hard because the kids can’t explain it very well.

Nicola Jack takes his Nexium twice a day. Does your son take his meds once or twice a day?
Jody

We do have esomeprazole, though I haven’t tried it or met anyone who has- omeprazole and lansoprazole are prescribable as generics now so I suspect that deters drs from using the newer ones.