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.

@user40816 Banana, chicken, broccoli, avocado sounds like the Baby Reflux Lady’s diet :) The things we do…

My daughter has a tongue tie but we haven’t had to snip it due to the success of oral exercises, she wasn’t seen til 6 months when I was getting desperate through lack of sleep - we’d been through three IBCLC, a different tongue tie practitioner, and an osteopath at that point. Mine has teeth and is quite a sparky individual so it isn’t easy & I completely understand but it has made such a difference.

Faye Higton (her business is www.rocks yeah in.co.uk) might be near you by the sounds of things and would be worth contacting to see whether she thinks she could help. She sees babies up to 12 months so I would do it sooner rather than later.

Try www.rockabyehub.co.uk not whatever autocorrect just offered up!

Mine eldest had such severe reflux which repeated caused her to stop breathing- so I know how grim it is. (She was a prem)

Ours slept in her pram for a long time. Every night we detached it and carried it upstairs. Propped up cot. Endless winding after every few mouthfuls.

We had 3 types of medication, which we needed to give at different times of day. One was a tablet which we needed to grind up and hide in food.

We had the thickener in milk. Omnaprozole and one other, which annoyingly, I can't recall but I will ask OH when he comes home. I do recall that it was expensive as the pharmacist at our surgery was always banging on about it.

However, we only arrived at this though lots of trial and error with the Drs. Some worked in the morning better than the evening etc. I had a notepad with notes about what worked best and at what times. I realised than an earlier meal helped even though I then had to do an extra night feed. I also realised that strawberries and tomatoes made it a lot worse.

The most helpful thing for me was our paediatric doctor wasn't afraid to call other Drs. for help- once he called a Dr. at Jimmy's Hospital for specific advice.

I suppose I am not giving a clear answer but more encouragement to keep on asking for help. Sending you lots of good wishes, OP

Our Health Visitor got me the referral we needed where the GP didn't. This was for a different health problem but I was amazed that the HV was able to make direct referrals. We had a referral to a dietician who then referred us to the allergy clinic and we also had a direct referral to ophthalmology when the HV spotted DD's lazy eye.

Health visitor could be worth a try...

Gripe water used to create a big burp for my reflux baby. Worked better than the prescribed meds.

And yes HV can refer to SALT as they did for my other child.

If you can afford it book a private paediatrician.

This man saved my sanity:
www.cromwellhospital.com/find-a-consultant/andrew-sawczenko-consultant-in-paediatric-medicine/

My son was on omeprazole until nearly 2.

Have you checked on website of community children's SALT service often they are open referral and may look like they won't accept referral under 1 but do dysphagia just not speech or communication

Just wanted to say it will get better. We had reflux so bad until she was properly on solids and off of milk (about 1.5). And after that we still had problems in the night with her waking up choking/gasping.
It did all just resolve on its own and she is now 3.5 with none of these problems.
i understand the effect it has on you psychologically though. I developed paranoia etc too due to lack of sleep. I suggest asking for counselling or CBT.
it will pass, and you’ll forget what this was like.

Could you ask to be referred to the perinatal mental health team or counselling in your area to support you? Sleep deprivation is so tough. Sorry I have no advice on the reflux. All the best to you xx

I know you said DH can't do nights - but could he do (for example) 5 to 8 am? Early morning for him but not impossibly early - 3 hours for you.

When you say allergen free.. what have you. Eliminated? And for how long?

Oh I feel for you this was the case with my DD. I had to keep her completely upright for 60 minutes after every feed. Has the doc prescribed Gaviscon powder?

It does get easier, I promise.

Have you tried getting her to fall asleep upright? If you succeed, once she's fallen asleep, keep her upright for another 10/20 mins to let her get into a deep sleep, then lay her down.

Thank you again for the overwhelming support, I never expected so many replies and am having trouble finding the time to respond to everyone individually. I will try and reply to some though...

@yorkshirepuddingandjam She definitely gets plagued by lower end wind later in the night, I put that down to the amount of air she swallowed being digested, but then I also am pleased when she passes a bowel motion before bed. I do seem to remember (I think) having a few better nights when she had a bout of diarrhoea so you may be on to something.

@LapinR0se If she rolls onto her front she immediately pushes herself up into sitting, I think I've only known her to sleep on her front on a handful of occasions and not for longer than 20 minutes or so.

Sleep consultant went through all sorts of ways to try and get her to self settle on the assumption at the time that she was waking out of habit. When everything failed and she started going through episodes of waking every 5 minutes, it became apparent it wasn't behavioural but there was something stopping her sleeping.

@bedtimestories I had a look at the wedges yesterday and will probably invest in one to see, it's just a shame I don't think I could get her to sleep on her front on it.

@tabletopdilemma After you said that I checked myself and I'm pretty sure I have a lip tie (I also have a tongue tie which is why DD does) so she quite possibly does too. I think we've noticed/are considering the surgical stuff all a little too late now though unfortunately.

To those suggesting private paediatrics/SALT input, I will certainly take a look at what is available although we are much more strapped for cash now I'm on my final 3 months of maternity.

I'll try and answer some more posters later. Thank you again all.

So sorry. I went through this with my daughter and it's incredibly hard. Have you considered cpma. The only thing that made a difference for us was using a non dairy formula.

I had an excellent gastro team here in Switzerland for my daughter who had laryngomalacia, reflux and CMPA.
They said reflux usually resolves by 12 months thanks to solids and sitting/standing.

I don’t think reflux is your issue. Is your daughter on solids and is she eating well?

PS if she sits up when she rolls onto her tummy that’s fine. It is a normal part of her development. Eventually she’ll figure out how to lie back down. She should be in a clear cot with nothing around her.

Your current sleeping situation is extremely unsafe, sorry to be blunt but it really is dangerous.

@Porridgeislife Haha if you know you know. Yes that's exactly where the diet was from. I have emailed Faye and will see what she says, thank you.

@ForestofD I have seriously considered trying to get her to sleep at night in the pram but have no idea how I'd get her off to sleep without going for a walk in the dark... or whether it would confuse her as she associates it with nap-length sleep. I might try it after tonight though when it's lighter till later and see if it helps.

@ReallyShouldBeDoingSomethingElse I wasn't aware of this, thank you. I do wonder why it wasn't mentioned at our 10m check.

@Triffid14 Thank you, as long away as it seems I know we are probably closer to the end than the beginning now.

I’d try contacting a private ENT consultant to see if it’s something they’d look at. They can usually refer you back into the NHS if necessary and an initial consultation fee isn’t usually too bad. I would think it’s worth checking for ENT abnormalities at this point - the NHS waiting list where we are is 62 weeks but the private consultant I saw could refer us back to the NHS for testing within a month or so (my DS probably has an abnormality in his nose though not reflux). Obviously might not be that but something to rule out.

@user40816 hello, I hope things are better for you now? I came across your thread as my little one is exactly the same and we’ve also tried all the things you have. I just wondered if you had any advice how to make it better?

hello! We re also dealing with teflux and laryngomalacia (mild degree). Our main issue though is reckon is just poor latch which i dont manage to correct or just a dysfunctional tongue (tongue tie reattached).
what did the doctors say to help with your symptoms?
my daughter doesnt seem to have cmpa as cant see anything on the body whatsoever. It really seems to just be air that comes through the mouth and eventually ends up digested too.