Please advise - don't know where I am anymore with reflux

[ilovetosleep]

DS2 is 23 weeks. He has been very unsettled around feeds since about 3 months. We have been 'diagnosed' with reflux and he has tried gaviscon and ranitidine, we are now on max dose of ranitidine at 1.6ml 3x a day. I don't think it is working.

The problem is, we have been back and forth to the GPs so many times, things have improved and worsened, we have been through a 4 months sleep regression, holidays and a viral infection, and my DS1 was generally pretty high needs, so I just don't know what is 'real' in terms of reflux and what is just 'normal baby'.

What I do know is that I can't go on much longer like this!

He first went on nursing strike at 3 months and we thought it was because he was in pain. He would cry and arch away from the breast and eventually would just not feed any more. However he would feed immediately after or before a nap, and all through the night.

He grizzles and grunts all day long, as if he is suppressing acid/vomit, but is this just because he is a grumpy baby?

He wakes all night, every 45mins-2hourly at a max, will only settle with a feed but its 50/50 as to whether he'll go back down again - if I feed to a deep sleep and hold upright for 20-30 mins h'll sleep for another couple of hours, but sometimes something startles him and he'll start arching from the breast, refuse to feed any more, and we'll need to vigorously bounce/rock him to sleep which can take an hour with all the writhing and back arching. It has crossed my mind this is just overtiredness? He often gurgles and gags through which I guess is sick.

We are now in a place where every 4 hours I take him to a dark bedroom, rock him to almost sleep and then feed him to sleep, as this is the only way I can make him feed. Then He'll often wake from his nap upset. This tactic hasn't worked the last couple of days as he only feeds a couple of mins before pulling off on off on and then giving up and crying.

The only daytime feeds he'll willingly take are the bed time feeds after his bath. He still has gaviscon at his bedtime feed but only one dose a day as it made him so constipated. He'll do his longest stretch of about 3.5 hours then.

Other things of note: poos are quite inconsistent, can be bright yellow and smell normal but be full of stretchy mucous, or can be quite dark green/brown. They'll often have lumps of pasty poo in but this I think is from the gaviscon. His poos are always quite explosive but can be every day or once a week. Very varied.

Weight gain perfect - following between 75/91st centile since birth

Has had tongue tie cut 3 times, keeps growing back. I do notice short periods of calm after each snip but I am not going to put him through all that again.

We have Cranial osteo each week - used to see an effect but not so much now.

I have been dairy free for 6 weeks and soy free for 2. Not noticed a huge difference although when I tested some butter on my toast a couple of weeks ago, he was up in the night for 3 nights totally wired and hyper for about 3-4 hours.

Won't take a dummy despite numerous attempts.

The strange thing is that he is generally a very happy (brave?!) baby that is only distressed by feeding. He grunts and grizzles all day but if he is being held and engaged with he can smile like he hasn't a care. We (thankfully) don't have prolonged screaming episodes, just general discontent and all the writhing and yelping in the night.

I am exhausted with both lack of sleep and worry. I feel quite convinced by my instincts but when he is smiley and calm I really doubt myself. Lots of people don't believe me and think he's just a bad sleeper. My GP has finally referred me to paed on basis of the possible cmpi but i haven't had an appointment through yet.

I really wanted to wait til 26 weeks for BLW but I am so tempted to try something now to see what happens, but I really want some proper advice first. And I have no idea where to start with early weaning/purees as never did it with DS1 ( who, btw, is suffering from me being so preoccupied with DS2!

I'd love some thoughts, do sorry its been such a long post. Thank you in advance.

[RunBikeRun]

Have you tried a dairy free diet? It could be CMPI/A also ask to be referred to a gastric peadiatrician, in my experience GP's are not very clued up on reflux

[RunBikeRun]

Just seen you've been referred. If would do a dairy free diet for your self and keep a food diary to see possible triggers.

[ilovetosleep]

Thanks, I have been dairy free for 6 wks and soy free for 2 weeks, did a trial with butter (see op). Done days I think that it's cmpi, others I'm not convinced.

[RunBikeRun]

So sorry, I'm so tired I really didn't read the post properly!

Reflux is a midfield. My son is six and has suffered since birth. It's an extremely difficult condition to manage and get medicated, if you are on Facebook look at the closed group The Reflux Room and Living With Reflux, both very busy forums with constant activity.

[Stellarella123]

My ds was exactly the same, he is now 3 and he stopped having trouble at 18m, we tried everything including dairy free but nothing seemed to work completely, we were bottle feeding him and adding carobel thickener - this made the biggest difference, we tried cranial osteopath but gave up eventually as that didn't help after a while, has he been checked for a posterior tongue tie? My ds had a slight tongue tie at the front but when he was just over 1 we were told he possibly had posterior tt but they couldn't do anything after 1!
This isn't normal, I got so used to having a "fussy" baby , and doctors saying he was fine etc, my sister had a baby a yr ago & I was close to tears regularly when I seen him feed normally, it's very hard, and we don't get the support we need,
We are in scotland and you can self refer to a feeding specialist at yorkhill who can help with tongue tie etc, x

[Stellarella123]

Also my ds was given probiotics for a few months which made a huge difference too, I was on antibiotics when I was pregnant for an infection and they reckoned it could have had something to do with that. Worth a try x

[ilovetosleep]

Thanks for your replies. Who suggested pro biotics? Because I do have some in the fridge, not been v good at giving them, but dr poo pooed them a bit and I haven't really bothered since then. I'll start them today!

TT was checked my prof griffiths who is leading TT surgeon in the country, he said if it has grown back twice already it will likely grow back again so not worth doing it any more unless it becomes problematic later in life.

I'm just so so tired of it all.

[feesh]

It sounds a lot like CMPI to me, having been through it with one of my twins. You need to give the dairy free diet a lot more time to work and you need to eliminate all soya too as the proteins are similar shapes. I would give it more than 6 weeks to get both proteins out of your systems completely. You need to be really strict as soya is hidden in loads of things, as are dairy items like whey powder.

[ilovetosleep]

I have been v strict with dairy apart from that butter trial about 3 weeks ago. Soya I only started 2 weeks ago and I've been v strict but yes I suppose I need longer. It really is in everything - what is soya lecithin? I've been avoiding that too, is that necessary? I have a referral to allergy paediatrician but app came through for a months time! I am going to push for it sooner. If it is cmpi, will treating the reflux with stronger meds be worth trying? Obv I will stay dairy/soya free but I'm desperate for some more immediate relief! Also, how do you suggest I go about weaning? Will solid food help? Blw? Purée?

[PragmaticWench]

We had this and my daughter was finally diagnosed with cmpa and other food allergies. I very reluctantly gave up feeding and put her on neocate formula, which helped massively. It's a bugger but sadly normal to wait up to 3 or 4 months to be referred to see a specialist. Can you afford to go privately? We found a standard paediatrician was useless but seeing an allergy specialist was brilliant, or a gastrointestinal speciaslist should help. Not sure if that is useful but you have my complete sympathy; coping with a baby who has relux/silent reflux and so doesn't sleep or feed well is an utter soul destroying nightmare. GPs will often ignore the issue as they're not well trained enough to diagnose (usually) and believe that provided the baby is gaining weight, it's not a problem. Which isn't true!!

[ilovetosleep]

It only occurred to me this konig that we hve insurance so I'm hoping for a much sooner appointment.

Is there any way they can rest for cpma? It seems to be suggested so often but how can they really know if it's that or 'just' reflux. I desperately don't want to give up bf and am being religious about what I eat but I've eaten out a couple of times and despite reassurance from the kitchen I never know how much I can trust them...

[feesh]

The only way to test for CMPI is through dietary trials. It's so hard, you have my every sympathy. I thought I was going mad at times when DS was younger. I had to manage it myself because we live overseas and support here is crap, but I've found this research paper to be absolutely invaluable in helping me to manage it:

www.ctajournal.com/content/3/1/23

[feesh]

Sorry, something weird happened to my iPad keyboard there!

I also meant to add that whenever we go back to the UK, we now see Dr Neil Shah at The Portland - I think a consultation with him is £150. He is absolutely brilliant and if you can afford it I can't recommend him enough.

[ilovetosleep]

We aren't actually in the uk but if things get desperate our insurance can send us for 2nd opinion in London so maybe we will look into that. Thanks for the link, I'll have a read.
I do feel like I'm going mad and I just don't had any faith in my instincts as its been going on so long with various treatments not making any difference,,,

[feesh]

Have a read of that link I gave you (sorry it didn't automatically convert) as I think it will really help you.

I also found the Little Refluxers website to be quite helpful.

[Stellarella123]

We were advised to wean early as the thickness of the purées stay down better. Even mixing some of your milk with baby rice? It's worth a
Try, my ds would not take any of the food at all bit I know others who had success this way. Good luck x

[Superworm]

DS is allergic to dairy and soy and really sensitive. I had eliminate every last trace of both to see an improvement.

Soy lectithins are an emulsifier/stabiliser that's added to most food. DS would react to these (although loads of babies don't). He would also react to any think that 'may contain traces of' so I avoided everything risky and it worked.

Most breads contains soy, vegetable oil is often soy based, some E numbers are soy based - E471, E479. Lots of pro-biotics contain dairy, lots of vitamins supplements contain both.

It does sound like allergies. I would be super strict and see if things improve. It took a year for me to get on top of things as it creeps in to everything!

[PragmaticWench]

It's true that you can't test for a low-level allergy (intolerance or non-ige) but there are skin-prick tests and RAST blood tests for more severe (ige) allergies. Don't be conned by things like the York test or kinesiology, they're not valid or reliable.

[bakingtins]

My ds2 had reflux and MSPI ( milk and soya protein intolerance) and Omeprazole made a big difference to us, along with very strict dietary restriction. I BF him until he was 2, from about 18m I could relax my diet, from about 30 m he could eat small amounts of dairy, at 4 he is a cheese fiend.
It's v tough, I feel for you.

[Fatmanbuttsam]

What about cisapride or an anti emetic before he eats.....he might also be a bit low on calcium and iron if he's constantly being sick....my Ds ended up on a dairy and gluten free diet for years which mitigated his up-chucking a lot......has a pyloric stenosis been ruled out.....best of luck to you, it's very difficult