Desperate - 18month old STILL has reflux

[WrayofSunshine360]

From the very beginning my youngest has struggled with reflux and wind since birth. The first year of his life has honestly been a blur. Many days and nights struggling to get him settled, he would literally shriek in pain and discomfort. Gripe water sometimes helped but not consistent. Other over the counter stuff also never worked, sometimes made it worse by causing constipation.

It wasn't til we started weaning and he was sitting up more on his own that the days got a little easier, nights were still bad. We discovered he was having a bad reaction to diary so that has been removed along with finding a diary free formula (neocate) which has helped a lot.

However, nights are still a problem. At 18 months old he is still waking up multiple times in the night. He would gag, retch, squirm, arch his back and cry in discomfort until a burp or fart comes out. It used to be after that happens he would go back over until the next time he wakes. Now, whenever he is gagging or uncomfortable he wakes up and won't go back to sleep He is wide awake and will stay so for 2 - 3 hours.

At this point doctors and HV can no longer help. Doctors have given me various medications to try but of course don't work, they can no longer prescribe me anything else. I have been told "he will grow out of it".

I should add he is still not crawling. He can bum shuffle and rolls around but not properly crawling or showing any signs of walking anytime soon. There are other delays such as not trying to talk or clapping and waving. Blood tests have been taken to see if there is anything genetically wrong that is resulting in these delays but doctors suggest he may have a form of autism.

Whether the possibility of autism is a factor in this reflux, I am not sure. But I am desperate for advice on how to settle him at night. The constant disturbance of sleep has been ongoing since I was pregnant with him. Nothing I do seems to reduce the reflux. Raising the mattress, propping his head on a pillow, various sleeping positions, burping him before and during sleep.

As I write this it is nearing 3:30 a.m. he has been awake from 2, and I am at my wits end.

Would appreciate any help. Thanks.

That sounds so hard, I'm so sorry.

So you've tried reflux prescription meds like losec, and used them consistently for a few weeks to let them work up?

And having found a dairy allergy - have you tested for any other food and environmental allergens? It does sound like how my child reacted to their allergen when accidentally exposed at childcare - lots of gastro upset and poor sleep.

Have you tried an infant antihistamine like kids zyrtec? It never made mine sleepy but really helped with the allergy symptoms (reflux, wind, vomiting).

What about painkillers like paracetamol or Nurofen? Do they help with sleep? Telling our GP that painkillers were helping helped me get a referral to a specialist for other help.

Hope you can find some relief soon, this stage is mind breaking tough. xx

Have you been referred to a paediatrician? My DD suffered badly with reflux and was referred to a paediatric gastroenterologist. What dairy substitutes are you using? Some kids with dairy intolerance can't tolerate soya either. I would recommend asking for a referral to a specialist and to discuss dietary options.

You've had some excellent advice on here already. Just wanted to suggest reading this on Tongue Tie to see if any of it sounds familiar.

Has the GP prescribed Omeprazole
for his reflux yet?

I'd also recommend looking at the SN Children Section. You'll probably find some more support in there

I would reassess medication and ask for a gastro paediatric referral.
My daughter is 3y8m still with severe reflux she is on a combination of omperazole currently 20mg twice a day, gaviscon in any drinks after 3pm and domperidone 5ml once a day. She needs high dose omperazole for any effect. This caused us issues as she reached the maximum dose for under 2s when she was 6 months old. The domperidone was a game changer for us but the dose has to be the max for her weight. She's now on the max omperazole for her age since January which brought her reflux back into control having been wildly out of control for the previous 6months - sat up right with her all night as she refluxed endlessly and her waking every 40 minutes. the domperidone will have to be increased to 3 times a day if she starts to outgrow the omperazole

She also has 20 food allergies and we definitely needed to identify most of these to improve her reflux. There could be other allergens at play. Have you looked at soya and egg as they often go hand in hand with cmpa. Half of babies with cmpa are also allergic to soya. The neocate is a very thin formula, are you thickening it as the amino acid formulas are awful for triggering reflux in babies without reflux nevermind those with it.

My daughter also has had a pillow overnight since she was 10 months under doctors advice and when her reflux is bad she has 4 which keep her cradled in an upright position but she was 3 when we started this.

The most important thing I have learnt about reflux is it's not linear and since accepting that my daughter reflux goes in and out of being managed it's easier to cope with and the disappointment of it returning is less. Things that trigger it are growth spurts, teething, colds and allergies. It's a constant juggling act!

What meds have you tried? Dts were on gaviscon, omeprazole and domperidone and were medicated until they were 2.

Hello everyone,

Thank you sooo much for all your well wishes and advice!! It's such a relief to know I am not the only one who is or has experience going through this. Whenever I have tried researching if this is a common thing, all I get is that babies should have outgrown reflux by 6 months or a year at the latest. So of course I'm panicking!!

Ironically the day after publishing my cry for help we got an appointment from the Child Development department - to which we have been on the waiting list since November. I am hoping they will provide advice or help with this.

To answer some of your questions: we have tried omeprazole, lansoprazole and gaviscon. None of them helped. I have not heard of domperidone so will def ask about that. With Neocate I did not know it is recommended to have a thickner!! Which makes me feel awful as i should've considered that. Will definitely arrange for one. Would Calobel be OK? Or would I need to speak with a doctor?

Recently I am finding my pregnancy pillow helps him for a period of time. He is still waking up, arching his back and gagging and sometimes after breaking wind he cries. Will def enquire about being seen by the gastro dept.

Diary has been removed from his diet but he reacts ok with eggs and peanut butter. However, blueberries, berries some tomato sauces he does not, maybe too acidic for him. Thankfully he is a good eater and is eager to eat and try anything. Can anyone suggest any kind of juice I can give him? He is currently only having his milk and water, and would like him to have something else to drink occasionally for a treat!

Thank you again to those who responded. Makes me feel less alone in this situation!!

Half of children with cmpa can’t tolerate soya as the protein is very similar.

My 8 yr old has been medicated again for reflux for the last year.

Would this also be classed as being lactose intolerant? Or is that seperate?

No. CMPA and Soya Allergy are linked as the protein molecules are so similar. I don't actually know much about Lactose and it's extremely rare in babies and DC. Can happen though obviously

seeing suspected autism, plus not crawling yet or walking (is he weight bearing on his feet at all?), makes me wonder about hypermobility and weak muscle tone which are often comorbid with autism, and can also extend to the muscles of the digestive system too. The sphincter that stops the acid coming back up is a muscle and those that move food along the whole digestive tract. Anyway, sorry I don’t have any specific tips - my DS with ASD didn’t have reflux / digestive problems, apart from chronic but mild constipation, but he didn’t walk til quite late and still struggles with gross and fine motor skills. Hopefully now you’ve been referred to child development they will look at the whole picture. Good luck, it does sound awful.

Domperidone is only licenced for over 12s so it can only prescribed for babies and toddlers by a paediatrician.

I would stay clear of juice to be honest. There's not benefit to giving it and it's not great for teeth which might be extra vulnerable because of the reflux. My 3yo has a cavity and 2 molars with staining and vulnerable to cavities due to her acid reflux. She is having fluoride treatments applied every 3 months to try and hold off any further damage

Some foods are more likely to trigger reflux than others. I think tomatoes are possibly on that list. I'm not sure my daughter has a nightshade allergy so can't have tomatoes. My mum has severe GERD too and can't have dairy, meat, any spice, garlic, caffeine, alcohol, nor any juices or carbonated drinks. She's now ok on caffeine free tea with oat milk or oat milk previously she could only tolerate water or oat milk.