Reflux has led me to call crisis team. Please help

[user40816]

DD is 11 months and continues to have (silent) reflux. We have spent around £1,000 on:

• Osteopath to relieve tension (which she has very little of)
• Chiropractor
• Tongue tie practitioner - DD had a 50% restriction which was cut at 3 months
• Lactation consultant, as well as attending BF support groups
• A month's intense input from a sleep consultant, who ended up telling us to seek help from the GP as there was no further suggestion they had
• Dietician - I have been allergen free for DD since 4 months old

We've been to the GP, we've tried all the medication they can prescribe. The GP has tried to refer us to paediatrics several times who just keep fobbing us off with a different dosages of medication, none of which work.

We don't practice any kind of safe sleep anymore out of desperation - DD is propped up with a pillow and V pillow to try and keep her upper half elevated through the night.

I've given probiotics, gripe water, peppermint tea... anything "holistic" that might help.

We've tried not co-sleeping and co-sleeping, neither make any difference other than how far I have to travel to settle her so we currently co-sleep.

Her issue is that she swallows too much air. I know this is the root cause, but it happens whether she is BFing, drinking from a bottle/cup, drinking water, eating and/or crying. She can even on occasions end up swallowing a huge air bubble with her own saliva.

The last few weeks things have gotten even worse and she will now be disturbed every 30 minutes, with 1 or 2 spells throughout the night of between 1-2 hours each of disturbances every 5 minutes and she is seemingly unable to get comfortable at all.

I now have insomnia, so can't sleep in the day, struggle to get to sleep at night and will stay awake for hours randomly in the night. I have some medication to try and tackle this but it leaves me very groggy and I cannot function, even more so than on such poor sleep. I also get episodes of paranoia and delusions after particularly bad nights and have called the crisis team in the past couple of weeks because I was so panicked someone was going to come and take DD from me and I was considering running away with her.

DP helps mostly by taking her out in the daytime when he is off but he cannot do the nights due to his work. DD does not respond well to DP at night either as she is not fully awake during these disturbances and becomes confused and scared by him.

I'm really only looking for any more suggestions to help alleviate the reflux at night other than everything we've tried, I just wanted to give a background as to everything we've already tried.

I'm so sorry you're going through this. My son (now 14) had the same and it's really hard.

This is so basic and you have probably already tried it but the one and only thing to make any change for him was to prop up the top of the cot so he wasn't sleeping flat. You can buy little wedges to go under the top two legs of the cot. The other thing to remember if you do this is to place your baby at the base of the cot to sleep so she doesn't slide down under the cover or whatever you're using. Also pls check this advice with your HV to make sure it is still ok; as I said my kids are now teens and I'm sure lots has moved on but this was the only thing which made a difference to my son. I hope you find respite soon x

@SurelyNot22 Thank you. We already have her propped up (a lot further than we could get a cot), sleeping sat at about a 45° angle. We've only been doing this in the last month now that she's bigger and fully mobile, but there's been no significant change. I think the first couple of nights seemed better (no spell of 5 minute disturbances) but that lasted for all of literally a couple of nights and then we were back to usual.

I'm sorry you once had to endure the same thing. Do you remember at what sort of age it started to get better?

See a,different paed
Assess properly eg swallow study?

Is she medicated for the reflux?

How is her development oteherwise? Are there other issues? Neuromuscular? Motor skills ?

That sounds so, so hard. My little girl has silent reflux and we’ve been through stages of waking every 45 minutes. Still not brilliant and I’m the only one in my NCT group that rates three wake up as an amazing night’s sleep :)

We have mostly resolved it with lots and lots of oral exercises (basically baby physio - she had a tongue tie) and a restricted diet for both of us.

Swallowing air is often linked to oral function. Tongue ties don’t happen in isolation, they usually come with a restricted tongue. Are you anywhere near North Wales or London?

@cestlavielife We don't have a choice about paediatrics unfortunately - our GP is referring us to "paediatrics" (as in the team ?at the hospital), rather than an individual.

I explicitly requested we see the SALT team or similar for a swallow assessment but paediatrics wouldn't grant the referral.

She is otherwise developing great. Sat at 5 months. Crawled at 7, started cruising furniture at 8. Claps, waves, points, jargoning, has babbling conversation, exchanges gestures and expressions, fantastic understanding, good fine motor ability. I've worried about the impact poor sleep will have on her but she seems to be developing well regardless.

@cocksstrideintheevening She is/has medicated both prescription and with holistic 'remedies'.

Take her into Paeds A&E. I would never ever normally suggest that, the situation in hospital is desperate, but it sounds like your situation really is desperate too and you need to physically put her in front of a paediatrician and ask them for next steps. Explain the impact on your mental health too.
I resolved one ongoing issue with my (ex prem, lots of other health things going on) daughter, I've never misused services any other time but I knew if I could just get her seen, rather than the constant batting around of referral letters between doctors, we would be able to move forward.
I'm sorry youve had such a hard start.

This sounds so awful and I’m sorry. Would a private review by a SALT be possible for you?

When you say you're proving her up is it her whole body tilted or her upper half. If she's on a proper reflux support her whole body should be flat but inclined. If she is folded in the middle as we would be if we were sat up in bed then this will make it a lowered. She needs to be unfolded and as straight as possible at all times.
Have you tried a food diary? I know you said it's swallowing air but food textures may help does it get better at anytime? If she's on drier foods or wetter foods? Dairy free etc etc.
also encourage her to play latex on her front instead of sitting up leaning forward. Even when she naps try this. It splints their chest and helps a lot even with adult indigestion symptoms. I hope this may help you.

@Porridgeislife Wow, someone who has said the same thing I say!! 3 would currently be phenomenal, 6 is currently a "good" night for us.

I believe she still has oral restriction, presumably a reformed restricted tie. But she is now too old to have anything done about it without surgery and anaesthetic and there's no way we can afford to go privately for that. On top of that, despite desperate attempts I just can't get her to do anything that she doesn't want to anymore (brushing her teeth is difficult enough, and with 8 teeth I wouldn't want to try putting my finger in her mouth to do oral exercises now).

We're not a million miles from North Wales...

That sounds very very hard
I had a refluxy colicky baby - now a strapping teen - and it is one of the hardest things I have dealt with.
Could she be teething? I used to tip calpol
down my two at the smallest peep of teething like grizzling at night.
You also need help with your sleep. Are you getting help with it?

Which allergens are you free from?

Would you consider neocate or one of the other specialist formulas for allergies to help rule out more obscure allergens?

My DC have multiple allergies. I had cut out most allergens but missed out soya...

I'll be slammed for this, but have you tried dairy free formula?

My son was similar and for whatever reason, it worked for us. Whilst bf, he was unsettled and suddenly changed, despite me having kept a food diary and cut things out etc. a consultant (Dr Neil Shah) told me that sometimes going on the formula just helps them to reset a bit in their gut.

I'm only going to mention this because you haven't specifically stated which medication, and it saved us with my daughters silent reflux. GP just wanted to give us baby gaviscon. At first it helped but then it caused constipation and made the whole thing worse. We pushed for omeprazole, and a moderate dose of it as well, and that's what made the biggest difference. Wasn't a compete fix but close enough.

I'm sorry if this is too basic to be helpful.

I had exactly the same issues with my baby and after months of thinking it was reflux, turned out it was constipation, even though her poo seemed normal to me, apparently they can still suffer. Dr prescribed a daily laxative powder to add to her milk and she was a completely different baby within hours! Worth trying to see if that helps.
Good luck, sleep deprivation is the worst, look after yourself xx

Doesn’t she want to sleep on her tummy now at 11 months? I don’t think I’ve ever seen a baby who can roll in the night, not do so. she’d probably be a lot more comfy too.

what exactly did the sleep consultant do?

Pls can you post a full day routine including naps and feeds.

@MaybeBabyTwo As much as I appreciate the suggestion I really don't think we'd get anywhere other than being referred back to the GP. I only say that as both myself and DP work in healthcare/the A&E arena and as she is "thriving" health and development wise, there would be nothing acute to treat/investigate. I know exactly what you mean but I just don't see a justification (from their POV) to do anything.

@Pinkplasticbathcup Possibly depending on the cost and/or if there's something local. I will see what I can find and make some enquiries, thank you.

@DidyouNO She is currently somewhat folded. We did try propping the cot up but it never felt like it was high enough to make a difference (as being too high just led to her sliding down). It's only because she seems to sleep better in her pram in the day when she is very much upright, so I try to replicate it in bed.

Have you tried the wedge where they sleep on their front at 45 degrees. Thankfully I didn't need it but came across when I was looking for things to help mt lo, I seem to remember it was for babies with severe silent reflux like your lo. Or a side sleeping position cushion. Does lo need colic medication to help get the air out?

Maybe get a private paed review head to toe
Addresing constipation always a good call probiotics for kids are worth a trial

I appreciate all the support, thank you everyone.

Re. Food/allergies - she is allergic (all mild) to dairy, soya, fish and nuts. All of her food is home cooked, "whole" foods. I previously went on a short term diet and ate nothing but avocado, banana, broccoli and chicken for 3 weeks (when we were EBF before weaning and after having been main allergen free (the above plus wheat, caffeine, processed sugars, etc) and there was no improvement. The reason I'm so convinced it's swallowed air is because you can hear (when she's eating/drinking) and feel (when BFing) it go down. It's like if she could just force a burp straight after then it'd get rid of it again but obviously you can't explain that to an 11 month old.

This suggests a range of investigations coukd be done to find cause
You may need to go privatec if you wantvto push since no general issues with development or health?
https://www.hopkinsmedicine.org/health/conditions-and-diseases/gerd-gastroesophageal-reflux-disease-in-children

Aerophagia throws up some things

I was thinking GERD. Omeprazole has changed the lives of so many in the 6-9m bracket in my breastfeeding support group. You'll also be dealing with leaps, teething and separation anxiety...so it is more complex. I recommend a night nanny once a week until things are addressed if you can afford it.

I'm now thinking ENT because of the air swallowing thing.....
You've probably thought of that too!
To answer your question my DS improved a lot once on solids but I appreciate you're past that point already

Having gone through similar with my child, please check for a front lip tie. My child had their tongue tie cut (it grew back) but later we noticed an upper lip tie. The dentist said it would have caused feeding difficulties like swallowing excess air due to improper latch. Worth a try!