Reflux & Omeprazole - need advice for brother with Downs Syndrome

[fatfloosie]

My brother (in his 20s) was doing explosive belches and suffering from reflux so bad that his throat became so sore he felt like he couldn't breathe or swallow. He was prescribed Omeprazole at 20mg daily but this was subsequently upped to 40mg daily as he still seemed miserable. This was in August. When I last saw him, at the end of September, he seemed to be getting increasingly depressed and obsessed with death and dying.

I spoke to my parents (who he lives with) yesterday and they were even more worried about him and his deteriorating mental health. I did some googling and came to the conclusion that the Omeprazole, although it was working for the reflux, was potentially also causing the anxiety etc. I rang back and suggested to my mother that they drop his dose back to 20mg and go back to GP to get something else prescribed instead. She had just had a really bizarre and upsetting episode with DB so decided to stop the Omeprazole altogether and use Gaviscon etc instead. I have spoken to her today and he seems slightly better and had a good night's sleep.

My mum would like DB to have an endoscopy and find out what is causing the reflux but the specialist they have seen thought it would be too distressing for him (but they saw him in the anxious state he has been in since August and not as his normal self).

Can anyone offer any experiences/advice?

Given that your brother is in his twenties, I think that it would be quite unlikely that he would have anything dodgy going on there, as changes in that area in the body typically take a long time to develop so only happen in much older people. I do agree that an endoscopy could be quite distressing for him, I certainly wouldn't like to have one, but i can understand why you woukd like to get to the bottom of it. Is it the belching that is the main symptom or does he get any pain at all? Does he have any problems with his heart at all?

The most likely thing is just some reflux. Perhaps ask the dr to try him on ranitidine? It is a different class of drug to oneprazole, but essentially works in the same way in that it reduces stomach acid. I had horrendous heartburn in pregnancy and ranitidine worked just fine, and I think it is a slightly safer drug. You can even buy it over the counter sold as "Zantac" or tesco do their own generic ones. It is slightly weaker than what you can get on prescription, but you could always try it and see how he goes.

I have since also been prescribed omeprazole to take with an NSAID as I have a sensitive stomach, but to be honest it doesn't appear to be any better or worse than ranitidine in it's effectiveness, so may be worth giving ranitidine a shot!

Hi MummysHappyPills. Thanks for giving me your very helpful perspective. It's made me realise that we have perhaps managed to get ourselves in a bit of an unnecessary tizz over this. As DB couldn't explain very well, it took a long time to work out that it was reflux - it seemed like he was constantly struggling to cough up phlegm, so there were weeks of trying different cough medicines. I think if we had twigged it was reflux straight away it wouldn't have got so bad and wouldn't now seem such a big problem. As you say, it's 'just some reflux' - an endoscopy does seem overkill!

I think for DB the main problem was the coughing and feeling unable to breathe and the sore throat and trouble swallowing. He doesn't have heart problems. The Omeprazole was upped because he was concerned about dying and it was thought this was because he was still worried about his symptoms, but we are now wondering if his symptoms were actually ok and it was the Omeprazole causing him to worry.

I will pass the Ranitidine suggestion on to my mum.

Thanks again.

Lansoprazole is better IMHO.
There are also things you can do re diet and propping the bed I at night.
Hope he feels better soon.

And yes badvoc is right, propping up the bed really helps. And of course what you eat makes a difference. Anything fatty set me off, and when I was pg if I had milk at breakfast e.g. Porridge, I would have heartburn all day, which was ironic as many people find milk helps! And unfortunately any spice, including ones like cinnamon. Never had it before or since pregnancy, but I remember it being horrible, so not surprised your bro found it distressing. Small frequent meals helped as well.

I take lansoprazole which works much better for me than omeprazole. I've also worked out that there are certain foods I just have to avoid now or I still feel yucky, so I can no longer eat mints, mayo (coleslaw really sets me off), coffee (I'm fine with decaf though) or wine ( Bacardi is now my friend!).

Might be worth trying to keep a bit of a food diary for your brother to see if you can spot a link?

It's also worth mentioning that this started around the time I started getting gallbladder problems, has he had a scan to check his gallbladder do you know?

I mentioned the sitting up at night to my mum and she says he's usually ok at night - which is making me think it could be food related. Interesting about coffee. I don't think he used to drink it but mum says he now loves it and she has been giving him mellow birds instead of the stronger stuff as she heard it was bad for reflux. I have told her to try decaff instead. If caffeine is a problem then that would explain why he got so bad when we originally thought it was a bad cough as he was being plied with lemsips etc, all with more caffeine.

Mum is keeping him off the Omeprazole for two weeks and then he can have a test to rule out helicobacter. In the meantime she is giving him small meals and keeping an eye out for any food triggers. If all that comes to nothing I will get her to ask GP about gallbladder.

Many many thanks for your replies, it has been so helpful.

Hmm decaff may be ok but iirc coffee is actually quite acidic anyway... However never really bothered me and my reflux anyway. Glad you seem to have a plan!

ive been on omeprazole for years now - 40mg twice daily - its not had any affect on my MH at all.
i also take ranatadine with it 300mg at night - this stopped all my horrible reflux related symptoms and i was happier when that happened.....

i would look at diet, raising the head of the bed, but i know loads of folk on omeprazole and not one with MH problems as a result

Could it be possible that the coffee is also contributing to his anxiety if he isn't used to a lot of caffeine?

I was 20 when I was diagnosed with a stomach ulcer and hiatus hernia so it is possible.

Can't understand why they will not do a gastroscope, my DD Downs had one done under GA found hiatus hernia she also has a quite severe heart defect,
Tell your mum to throw her toys out of the pram!!!

Thank you for the further replies.

I saw my brother yesterday and he is loads better mentally, almost back to normal, just a little bit tired and distracted - so it does seem to have been the Omeprazole not agreeing with him. The reflux hasn't returned yet so hopefully it is manageable with a close eye on diet

He is having tests for helicobacter and gluten intolerance but if these are negative and the reflux returns I will get mum to throw her toys out of the pram (and it will be very helpful for her to know that your DD was ok having a gastroscope, thanks 2oldtobeamum)

Just to update in case anyone with similar problems finds this thread in the future.

My brother tested positive for gluten intolerance and had a gastroscopy (without sedation - just a throat spray - and he was fine) to confirm.

He has been on a gluten free diet since before Christmas and is now back to his usual gregarious self