GERD/ Dysphagia

[MummyKelJel]

My 11 month old is really struggling with reflux and dysphagia. We've tried PPI's and they've not helped.
I'm stuck on what to do next ? I've been back and two to the GP , they say there's nothing they can do to help. His next hospital appointment isn't until Feb and I feel at a loss.
Has anyone experienced similar ? What were the next steps if PPI's don't help ?? Any tips and tricks ?

We're stressed and very sleep deprived !

My daughter has reflux that is tricky to treat and still has it aged 4. She is on omperazole which is only effective when it's a 3mg/kg so she is nearly always on the highest dose for her age. She is also on gaviscon sachets to thicken liquids and takes a medication called domperidone which speeds up the emptying of the stomach. This can only be prescribed by a paediatrician and after other methods have been exhausted. My daughter has been on it since about 8 months after maxing out her omperazole at 5 months.
My daughter also has food allergies and we had to identify all of them before we got her reflux under control. Colds and teething made her reflux worse. She's slept with a pillow since 10 months under medical advice but under the sheet. She now has 4 pillows when her reflux is bad but still mostly sleeps in my arms like a newborn.

My second daughter also has persistent reflux – she's now almost three. Omeprazole works for her at a lower dose, but it's right on the edge of effectiveness, so we need to keep it very carefully matched to her weight. A growth spurt as a baby could make it look like it had stopped working. Has a higher dose been tried, or just the starter 1mg/kg?

We coslept (following the Lullaby Trust's advice), and once DD2 was big enough to move around and pick her own sleeping position, she often slept half on me, reclined rather than anywhere near flat. We still sleep this way when she's having a bad night. I'd also like to find the time to make a child-sized wedge pillow, as she's not the greatest with a pile of regular pillows. I also kept breastfeeding her, both so she has that on tap for comfort and to soothe the pain and to reduce the risk of dehydration when a virus makes her reflux flare – we've narrowly avoided IV fluids a couple of times.

For her, it is gradually getting better, vastly improved compared to her babyhood, but when I look back even 6 months or a year, I can see changes.

Waves at @Superscientist, as we're both regulars on these threads.

Thank you both for your replies !
He's on 10mg and has one every morning , but seems completely ineffective.
He has to have all liquids thickened as he's at risk of aspirating. ( coughs , gags, chokes on all liquids and on yogurt )
He sleeps on me as well , I feel like I'm doing all I can at this point then??

I was in hospital with him last week and the consultant there seemed to think 1 10mg dose was correct, well just have to keep powering on.
I feel so sorry for him and it's horrendous seeing him struggle so much x

Hiya, I suffer from reflux but can only really suggest stuff you've probably already done, keeping them upright for as long as possible after feeding, if they're on food, keep a diary of what triggers worse symptoms etc.

What I would also say is if they're on omeprazole, please make sure they are regularly blood tested for b12. It's very common to be b12 deficient if on a PPI and it can have such an impact on their development x

What does he weigh? At 11 months, 10 mg is likely to be close to the 1 mg/kg dose that babies are usually started on, but higher doses can be prescribed if necessary. If he's still clearly in pain, I would be arguing that a higher dose ought to be tried unless there's a specific reason why that's not suitable for him.

Has he been referred for any help with his swallowing? I think speech and language also cover swallowing difficulties.

The omperazole dose can be increased, what is the right dose is child dependent. How long has he been on 10mg and how has his weight changed in that time? If it's been a while or they have gained more than 1kg I would at least ask if it can be weight adjusted.

Have allergies been explored?

My daughters GP had her on 1.4 mg/kg and it would be ok for a week or so each time it was weight adjusted but she really quickly outgrew it and we were back at square one.
We saw a paediatrician for something else and he doubled it to 3mg/kg and we noticed a big difference. She was on 20mg at 5 months once she reached 6.7kg.
She was on this dose until 2 and then she was kept at 2mg/kg and under paeds but it didn't hold for very long and we would need her domperidone increased as it would be worse after she had grown upwards without weight gain so the omperazole couldn't go up. She had a bad relapse at 3 and we saw a different paediatrician who increased her omperazole to 20mg twice a day which is about 2.5mg/kg which has been ok for a year now and has only needed one dose increase of domperidone in that time and we are now on 6-9 monthly reviews with the paediatrician rather than 3 monthly as we were. Thankfully her weight doesn't increase that quickly nowadays.

It's really hard, drs are quite blaze about reflux. We actually went private and that was how we got the domperidone prescribed. We were struggling to get in with paeds and the GP had reached their limit. When our paediatrician reached their limit of expertise we really had to push the impact to my daughter to get the referral to a gastro specialist when she was 3. At the time she was waking every 40 minutes, had damaged her teeth and couldn't eat and complained daily of abdominal pain. She was due to start school later that year and she really would have struggled to manage school on that much broken sleep and it also wasn't sustainable for me and ended up needing some counselling as it was. Prior to pushing wellbeing I had the old she's gaining weight, she growing, she's meeting milestones and so on so the facts she's in pain didn't matter just give her Calpol when she complains.

Hello @skkyelark waves

He's on a completely dairy free diet incase it was that but again no difference !

I do think he needs more omeprazole then, I'll have to mention it in clinic ! They weren't even going to give me any this month because he was on a two month trial for it , but it's come to an end , and we're just left with no help it seems ? Very hard going!!

We have a SALT coming to watch him eat and drink on the 24th 🙏🏻 We just need help and someone to listen to us

He also doesn't babble at all and I'm wondering if it's because hes uncomfortable

It might be worth keeping a food diary as there might be multiple allergies. Soya and egg are common with dairy allergies. My daughter actually has 20, which is on the unusual side. Are they on dairy free formula? Which one and is it being thickened?

I'd definitely push for an increase that dose is ok for a trial but if it's not helping the next step is to try a higher dose and 2 months is a reasonable trial period.

My daughter had a development delay at 4.5 months due to under treated reflux and undiagnosed food allergies. A week on the high dose omperazole and me going dairy and soya free and her development came on quickly and by 5.5 months she was perfectly average. My HV was helpful at advocating for me. How's your relationship with your HV?

I don't doubt it's the dosage in this case !
He's a big boy , on the 91st centile

Thank you for all your help and advice 🙏🏻 hopefully we get somewhere !

My HV is fantastic she's been brilliant with both my boys , my eldest is autistic and she's very involved with us as a family , she comes to review both the boys quite regularly .

So it's probably just under 1mg/kg assuming weight around 11kg.
I'd definitely be pushing for a dose increase. Do you have a recent weight? It might be an excuse to touch base with HV. I have found GPs a bit more helpful when I could say. I've spoken to my HV and she's suggested I talk to you about my daughters reflux.
It would be good to get any developmental concerns noted too.

Yeah he's 24lb now I believe !!
I agree ! Although his consultant in the hospital a couple weeks ago said it was fine and wanted to concentrate more on his throat issues but I don't think the throat issues will heal if he's not on the correct dose for the GERD 🤷🏼‍♀️

Very stressful