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Long term reflux advice please??

21 replies

llmb · 08/04/2018 09:09

My 10 year old was born with severe silent reflux. His osophagus was damaged (he had a lot of cameras, ph studies and biopsies etc done) my eldest had reflux but would projectile vomit so I know plenty about reflux.

The problem is my youngest was on meds for I think 2 ish years and then came off them and seemed ok. About 4 years about (so still young) he would complain he’d been ‘sick in his mouth’ when at school. So after lunch and straight out running round on the playground etc. He would always end up with hiccups when laughing/laying down etc. Gp said don’t worry all the while it wasn’t hurting him. It then changed to hurting him after about 6 months or so, so I went back and gp put him back on Omeprazole. This helped. Now though he says he feels sick often (although I’m not sure if this is anxiety-long story) and he is refluxing and complaining again about feeling sick etc after lunch at school and today I was making him laugh and he was hiccuping which hurt. Going to ring gp this week as I’m guessing they could increase dose of Omeprazole? I remember being told (years ago) there is an operation they can do to stop reflux. I’m not going to ask for an operation obviously but I wondered how long they ‘allow’ reflux to go on for in children? Is long term medication ok?

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llmb · 08/04/2018 15:48

Hopeful bump

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nocoolnamesleft · 08/04/2018 20:05

Sounds like this is beyond your GP, and needs to go back to paeds gastro.

Refluxwrangler · 09/04/2018 00:02

Hi, yes, there's is an op called a fundoplication where they sort of twist the top of the stomach round at the top to prevent reflux.

I was very wary of it when my dc was young and luckily one of his doctors agreed and wanted to treat purely with medication. At 10, my dc has been on omeprazole for 9 and a half years, though is now down to 10 mg a day. I understand it has a very good safety record for long term use in children.

llmb · 09/04/2018 07:18

ThAnks for replying. Whilst awaiting to see what gp says I wonder what they will say. If I remember rightly gp couldn’t give omeperaZole to children the paediatrician had to but I’m guessing we didn’t have to go back to the hospital as ds already had it? He is on 10mg. Do they do it on their weight still or is it now just age? He’s very skinny still.

I just worry as it does hurt, as apposed to just food coming up and going back down without hurting....

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Refluxwrangler · 10/04/2018 09:24

I think you're right to take it further again, if it hurts him. Poor wee boy, sounds horrible.

Tbh, a couple of years ago, my son had a trial off Omeprazole, and after about 2 weeks, he started randomly vomiting 4 or 5 times a day. It didn't hurt him at all at that point but the gastro still put him back on it.

With regard to weight, I think there is probably scope for your son to have a higher dose. When my son was 2, and he was a tiny two, about 9 kg (all part of his condition), he was put onto the mega dose of 30 mg to try to avoid the fundoplication op. It worked. I think this was a really high dose though and not for the long term.

I'd definitely try and contact your son's paediatrician or even ask for a referral to a paed gastroenterologist.

llmb · 10/04/2018 12:29

Wow 30mg is high for so little! There obviously is scope for it to be increased then! Trying to get an appointment at the moment!

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llmb · 10/04/2018 14:08

reflux out of interest do they do their best not to operate? Is it something they only do if meds don’t work?

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Refluxwrangler · 10/04/2018 15:42

Hiya, yes 30 mg was high! I had a (suppressed) raised eyebrow from another medic about it when they saw my son. But I really trusted my son's gastro - he was great.

Interestingly re the op, at the time my son had a gastro as well as a surgeon (who was involved with a gastrostomy placement) and the surgeon was massively pushing for the fundo and the gastro against it. They would (respectfully) disagree in front of me which was quite tricky!

My mum who'd been a nurse for her 40 odd year career said that was typical - 'surgeons gonna cut' type thing(!), whereas clinicians proceed slowly.

I have to say, I'm pleased my son didn't have the op. I've heard that it can cause other complications such as 'dumping syndrome'.

I'm sure for others, it's a success, otherwise they wouldn't do it. But I think the gastro (ie not surgeon) did say to me that surgeons have a tendency to overestimate the success of their ops... that they typically see the patient once after an op and the onus can be on the patient to say, yes doctor, all's fine iyswim. Whereas clinicians see the patients on an ongoing basis. My son saw his gastro for more than 9 years.

It definitely sounds like the best next step for your son is to see the paed/paed gastro and try an increased omeprazole dose if they let you, then see how that goes.

Sorry this is such a long post. It's quite identifying too if either of the (male) docs have a mumsnet habit. I try and use this name just for identifying/medical stuff though!

Best of luck. Do ask any more questions and I'll try not to be so long-winded!

llmb · 10/04/2018 15:49

Not long winded at all! I appreciate it.

Ds was in hospital so much under the age of 18 months I actually have forgotten how many times! He was for pylorexstenosis (sp) and have biopsy’s taken all the way through from mouth to bottom and had a ph study done over 24 hours in London that hadn’t been done before, he was a Guinea pig for it but nothing really showed other than the obvious.

I get a bit paranoid at what can result from pro longed reflux in children.. I have a phone consultation this week with gp so will see what they say but not his usual gp. It’s bad but I can’t remember when we went back on omeperazole again!

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fleetingthinker · 11/04/2018 00:13

Have allergies bee ruled out?

DS had terrible reflux as a baby and would have episodes of stopping breathing Sad He was in lots of medication but it cleared completely off nice I got in top of his allergies.

I also had awful reflux, gastritis and oesophagitis for about 15 years that was related to undiagnosed coeliac disease. I'm was on all sorts of PPI's for a long time but it completely went after diagnosis and hasn't returned.

llmb · 11/04/2018 07:05

Yes he had allergy testing done when he was younger.

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fleetingthinker · 11/04/2018 19:40

Does he have any other signs of allergies?

Delayed allergies won't be positive on the pin prick tests

llmb · 11/04/2018 21:14

He was intolerant to dairy although he can now tolerate dairy.....I had to keep him off lots of things when I weaned him (he had various mills and ended up on one of the medicated ones for reflux) so weaning was quite slow in terms of introducing. He couldn’t have wheat either but was ok after couple of years.

He’s asthmatic although I don’t think that’s relevant as it’s in the family

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fleetingthinker · 11/04/2018 23:06

Have you tried cutting them out again to see if the reflux resolves?

That would be my first move. Totally removing wheat and dairy for 8 weeks and see if it improves.

Reflux is awful and painful so I really feel for him. Long term reflux will put him at risk of Barrett's disease so it's worth exploring all options.

llmb · 12/04/2018 06:13

He would hate thay after being back on it after all these years poor mite! I could certainly try.

It’s awful isn’t it, you think it’s bad enough dealing with it when their babies but told they will grow out of it but when they don’t... makes me feel sad for him!

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hazeyjane · 12/04/2018 22:38

I just started a thread on children's health asking about endoscopies, ph studies etc, as ds has just been referred for one....then I saw your thread.

My ds is nearly 8 and has had reflux since birth.

Refluxwrangler · 13/04/2018 09:40

I would see your GP as planned, and it sounds like your son probably needs to be re-referred to a paed/gastro. Can you try to push for a specialist gastro?

Is the pyloric stenosis something that was resolved in his babyhood or were you given to understand it might resurface or be something he had to live with? Sorry I don't know anything about it.

Anyhow, the right doctor will be able to see if new tests are needed or 'just' an increased Omeprazole dose.

@hazeyjane my son has had some of those tests - I'll post on your thread.

llmb · 13/04/2018 09:45

hazle can you link your thread? I’m happy to answer any questions.

reflux sorry no, I meant they questioned it as a baby but ruled it out so he didn’t have it. I just know that he had copious amounts of tastings and I don’t really know why as nothing really came of them? Just reconfirming his reflux.. I have a phone call booked for this afternoon. I’m hoping just a change of doseage but I will ask about seeing a paed.

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llmb · 13/04/2018 09:56

hazle Iv replied on your thread Flowers

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llmb · 13/04/2018 14:37

Doctor said I can double the dose so 20mg and see how he is over couple weeks. I mentioned seeing the gastro paed and he didn’t seem too bothered, he said only if 20mg doesn’t help.

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Refluxwrangler · 13/04/2018 21:21

That's good (I think?!); I really hope the 20 mg helps him.

Re all the tests, I guess that was to rule stuff out like eosinophilic oesophagitis (sp?) etc?

Best of luck with it all Brew

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