1 year old STILL has reflux

[flowerlover1990]

My little boy is nearly 1 and still has silent reflux. He starts nursery school in January and I’m so worried about it. His diet is so restricted, there are so many things that trigger it (tomatoes, garlic, onion, potato, oats, banana, avocado, the list goes on) I don’t know how they are going to feed him and also understand him and his needs. If he eats the wrong food, he will scream in pain for hours. I feel so alone. I had one reflux mum friend but now her boy has grown out of it, I literally never hear from her anymore. She never asks how my boy is doing but always sharing how great her son is getting on.
I just can’t believe at 1 year we are still going through this as a family 😭 when will this end?!
We’ve tried Omeprazole many times and nothing has helped. Gaviscon makes him constipated and he already struggles with his tummy as it is. He has regular cranial osteopath treatment and we give him some natural remedies too, but it just won’t go away 😢 Not sure what the point to this post is… but it just feels so unfair 💔 I also feel like the reflux is stopping his full potential and development as he spends so much time being in pain or upset. I can’t do this anymore.

Does he have other symptoms of allergies? Vomiting, eczema, rashes etc.? It might be more than just bog standard reflux x

Has the omeprazole dose been adjusted as he’s grown?

we had a combination of that and a milk thickener. It was around 16 months that my son grew out of his reflux so I understand the worries.

Send to a childminder who will be much more flexible.

Has he been referred to the Allergy Clinic yet?

It doesn’t really go until they walk. Gravity then moves the food down.

I would also (with the aid of a paediatrician) look at other H+ inhibitors and maybe increased doses.

Is he under a dietician or had allergy testing? My son screamed every minute he was awake (and asleep!) until diagnosed with cmp/soy/egg allergies. Nursery have been great. They cater for his allergies completely. But I agree a child minder would be even better.

This doesn’t sound like standard reflux potentially an allergy. I would go back to GP and flag it again. Ask about coeliac / allergy testing

My daughter still has reflux aged 4!
Omperazole only helps her at the top 3mg/kg dose which means she's often on the highest dose for her age and can't be weight adjusted. She's also on gaviscon and domperidone for her reflux. Domperidone was the game changer. She has 20 food allergies which are independent of her reflux but does make it worse.

She's free from dairy, soya (incl. Soya fed poultry), eggs, beef, fish, celery, tomato, peppers, aubergine, paprika, chillies, coconut, onions and garlic, pea protein and tapioca! Nursery and school have been able to give her a bespoke menu. They tend to make veg purees to replace tomatoes or dairy as a sauce. She has a lots of lentils and pulses but also pork and lamb as meat sauces. Pork and mustard or lamb and cumin are the basis of a lot of our meals

He sometimes has little rashes but a bit of Epederm normally sorts it. He has CMPA and it's nothing like that rash

I'd push for an allergy test xx

Thank you. He was always just prescribed 10mg and the paed told us if that dose didn't work, then there's no point continuing with it. I've been so let down by our local nhs with his reflux. I've never felt so alone with it. Everything is a fight and I'm broken. 😞

He has but he will be way into toddlerhood by the time we get seen so we are paying for a private allergy test which is happening in 2 weeks. Praying for some answers

He's just started to take a few unaided steps but is very cautious with it at the moment. I really hope it goes once his walking comes on. Thanks for your message

We have an allergy test which we are paying for in 2 weeks time. I hope our nursery are able to cater accordingly. Sorry you've also had a difficult experience too 😞

Oh my goodness - I'm so sorry you've also have gone through this for so many years. That must be so hard. How have you coped? My mental health has massively declined during this first year. We have an allergy test in 2 weeks time. Do you know why your 4 year old still has it?

I'm sorry to say that DS1 had reflux until he was 5.

I get the feeling alone thing!

He was an early walker (10 months) and highly active but the reflux was still there. He was diagnosed as lactose intolerant aged 3.

Definitely get more medical help. Its horrible for us and them.

Now he's 13 and has grown out of the lactose intolerance. He still gets the occasional bout of reflux but obviously can communicate a lot better about it. We still eat ridiculously early (6pm compared to the standard local time of 8pm (not UK)) so he doesn't go to sleep on a full stomach.

I still have reflux, I’m 56. I remember being told that DD2 would grow out of her reflux and thinking - really ? She still gets it now at age 23. We used the thickening agent for her feeds as a baby too. It did improve once she started sitting upright and then walking.

I would tell the nursery about his reflux and allergy tests.

Ds1 had reflux that got better when he was walking. Ds2's silent reflux was so bad he was under a paediatric consultant, on prescription formula until 15 months old and has still not grown out of it still at 18 years of age but he is obviously much more able to manage it.

What helped was being told to keep a dummy in his mouth so he was constantly swallowing down to avoid scar tissue in his oesophagus from being about 4 months until 3 and going to nursery. He did struggle with food textures and this is still a little evident at 18. But he does eat a massive variety of food and is a strapping 6 foot chap.

It is completely stressful because it is food and how we are meant to keep them alive and healthy. Some things are better when you just accept that this will be more difficult that normal meal times for millions of other children. It is shit but you are a very caring parent and you are trying to cater to your child's needs. The allergy test may throw something up that might help them.

sounds like you have a crap paed. The dose should absolutely be adjusted. DTs were medicated omeprazole, gaviscon and domperidone (don't think they prescribe that any more) until just before their second birthdays.

In response to your paediatrician that said if 10mg didn't help higher wouldn't. Omperazole only helped my daughter when she went to 18mg at 6kg.
Once she got to 6.5kg at 5.5 months she was on 20mg until she was 2. It was ok until she was over 10kg when it stopped working, it was weight adjusted at 2mg/kg but was minimally effective. Once she was 3 it could be increased to 40mg a day and it was effective again. She's 15kg so it's about 2.5 mg/kg now.

Yes it trashed my mental and physical health. I had severe treatment resistant depression and pyschosis and spent 10 weeks in a mother and baby unit when she was 10 months old. It took until she was 2 to recover from it and earlier this year I had some counselling with my HV to help me process those first years and coping as a parent with needs (I'm bipolar) with a child with needs.

They don't know why she still has it. There are tests they could run but they would involve a general anaesthetic and at the moment they don't believe the risk is worth it. The outcome of the tests is likely she needs reflux treatment. They are treating reflux so it won't add anything at the moment.

My daughters allergies are delayed this means they don't show up on testing. They are only diagnosed with careful removal and reintroductions to see if symptoms return. The only allergies that show up on tests are immediate allergies that cause more classical allergy symptoms such as itching, hives, swelling and anaphylaxis. The symptoms of delayed allergies are more gut based.

If she doesn't outgrow her allergies in the next year it will become less likely that she will outgrow them. I have a strong history of food intolerances, I have a histamine intolerance, my mum and sister have dairy intolerances. My sister was failure to thrive due to severe projectile vomiting, likely to have been cmpa in hindsight. My mum has severe reflux which doesn't respond to medication and has required surgery to manage. My mil also has reflux.

It takes a lot of pushing to advocate for her needs. She has a cavity due to a bad reflux flare up last summer. She went back to waking every 40 minutes only sleeping whilst being held. Refluxing most of the night. It took 5 months to get it back under control and it was only when her omperazole went from 25 to 40mg that we got respite.

My daughter does need high doses of omperazole. That's not to say that your child will need it, I have just put my daughters situation to demonstrate that the dose can absolutely make a huge difference in the benefit of the medication. Go into the next appointments armed with information. Going higher than 10mg might not help but ask if it's worth trying anyway just in case. Lansoprazole is another reflux med in the same class as omperazole that can be given to infants. It might be worth asking about that.

@boulevardofbrokendreamss domperidone can still be prescribed but it's no longer licenced for under 12s so can only be prescribed to infants and young children by paediatricians and only when other treatments haven't been effective. My daughter is 4 and has been on it since 8 months

I second (third, fourth,...) that you need the medication looked at again – poor him and poor you, in that much pain for so long! It will get hugely easier for you mentally if they can get the pain under control.

DD2 still has reflux at 2.5 years (waves at @Superscientist ). Omeprazole works for her at 1mg/kg, but that's right at the lower limit for her – we need the dose adjusted regularly. And some need a higher dose per kilo, as @Superscientist says.

Talk to your nursery about his reflux and how the wrong food affects him, and see what they say. If they are confident they can manage it and have managed food allergies before, you will feel much better. Or would you feel better sending him a packed lunch and snacks? If they can't accommodate – better to know that now and make other plans.

What do you use as your milk alternative? Soya allergies are common with CMPA and my son gets reflux with oat milk.

My ds is nearly 5 and he still gets reflux but not as much as he used to. I remember a GP saying he would outgrow it by 6 weeks, I understand that most do but it really didn't help me feel less alone as he got older.

Also sorry to say that DS 18 STILL. has

mild Reflux

He managed without Omeprazole from aged 7, but would still have 'postural' bouts ie trampolining played havoc as did rolling down hills (school panicked at that one). He also had CMPA but also started to tolerate dairy from that age (hates the taste of dairy milk though)

We were always told he would 'grow out of it' at a year, two years etc but he just didn't.

We were told that he really needs (can't remember the name of the op to correct) but they really didn't like to do it

My baby is the same. She is 15 months. Still horrric reflux on medication but not very effective any more. Numerous allergies , so many foods set it off. Starting to concern me now as it’s awful she screams and you can hear it all coming up

I'm so sorry, that must be awful for both of you and so difficult to navigate

Are they under the Allergy Clinic?