GORD reflux - difficulting increasing milk intake

[ladybird182]

I am wondering if anyone has a similar problem...

My LO, 10 weeks tomorrow was diagnosed with GORD acid reflux when she was 5 1/2 weeks old. We ended up in the hospital after several severe chocking incidents. Which mainly happened in the middle of the night, say 1 1/2 - 2hours after FF. Luckily we heard her, even though it happens quite silently. She goes bright red, vigorously shakes her head side to side, wide 'help me' eyes, and clearly struggling to breathe. Once picked up and held up right she would tend to calm down again. By the time we are at the hospital, GP's etc she would be sleeping soundly. Along side this she would be really grunty, irritable in her crib, back arching etc.

We ended up getting a referral to peds unit and she actually had one of these chocking incidents while there so we were kept in overnight for obs. They decided it was GORD reflux and put us on a strict feeding plan as apparently its really important not to over feed her. So 60ml of formula every 3 hours (at the time she only weighed about 6lbs 8oz). She was also put on ranitidine and domperidone.

We ended up back there after a week as she still seemed to be really suffering with reflux symptoms, altho not as severe. She was then put on domperidone and omprezole. After a week of being on this she was then suffering really badly with trapped wind, not having many dirty nappies, clearly in a lot of pain in her stomach. So again back to the hospital and kept in overnight for obs. Left with increase dose of the omprezole.
Last few weeks had been going pretty well, a few unsettled spells (altho we suspected colic and started infacol which seemed to help with this) but nothing major, and most importantly no full chocking incidents only a couple of very mild moments. When she got weighed a week ago at 9 weeks she had dipped on the weight chart (then 7lbs4), previously she was climbing steadily along the bottom line (myself and my husband both quite petite and she was born at 37 weeks small so there had been no weight concerns). Same day we had the LO’s review at hospital so discussed the weight dip and ped agreed to slowly up her milk volume so we changed it for 60ml to 75ml over 7 feeds in a day. she always finishes her bottle.

In the last week the GORD symptoms are coming back!! Back arching, really unsettled, upset and grunty in her crib at night, hiccups, and several mild episodes. Got her weighed yesterday and shes 7lbs 6. When we called the hospital to ask if her meds should be increased as her milk is and her weight slightly gone up since our last visit (even tho not as much as we’d have liked), they informed us that she hasn’t gained enough weight to justify milk increase or meds….. we are very confused and surely her weight won’t go up if she is staying constantly on the same amount of milk?! Spoken to my lovely HV and shes said to follow peds advice but that she will need to take a little more milk to help with her weight, but that we may need to take it very very slowly. Decided to do alternate feeds so one at 60ml, then 70ml, then back to 60ml etc. We started this yesterday and she wasn’t too bad in the night until 5am this morning when she had a full blown chocking incident, really bad one. Its so upsetting to see her suffer like this.

We have now decided to today go back fully to the 60ml to let her hopefully feel so relief, then starting tomorrow morning try 65ml at each feed. Any more incidents we will need to get back to the hospital and push for more help again.

Has anyone else’s LO suffered with GORD and had problems attempting to up their milk intake and weight?? Feels like we are going backwards at the moment! Just want her to be well and healthy in all aspects. Sorry for the long post, lots of info to put down.

I am not saying domperidone doesn't work, I am saying there are big concerns about its safety. Concerns expressed not by tabloid, but by state agencies in France and US. Even on the oral suspension information sheet is it written it shouldn't be given for more than a week www.medicines.org.uk/emc/medicine/27871. So I don't understand why you are saying I am wrong. I am just warning parents of the risks. Doctors are inundated with pleas from exhausted parents and are too keen to just give whatever drug the parents are asking for.

Of course you need to balance risks and benefits. But an unknown risk? If your LO will have an heart condition during childhood or adulthood? No thank you.
And the benefits? Hum, again not sure, if you read the Journal of Perinatology (again certainly NOT a tabloid) www.nature.com/jp/journal/v28/n11/full/jp200881a.html it shows an increase of reflux episodes with the use of Domperidone even if it also states a shortening in the duration. A physiopathological study of the relations between GER and gastric activity in the newborn has shown that a highly variable gastric emptying rate may lead to increased reflux frequency, as episodes are more frequent during slow emptying, that is, when peristalsis is ineffective.36 Domperidone may thus augment the negative effect of the gastric motor incoordination due to immaturity by increasing the variability of the emptying rate and promoting refluxes.

The alternative ? I noticed that walking with my DS with his head over my shoulder for an hour worked and helped a lot. Not something you want to do because you just so wished you could sleep or sit down. But worth a try and certainly risk free.

So much wisdom on this thread my little girl has reflux and I am not coping well. She is 12 weeks, we have Gaviscon prescribed but I haven't been giving it to her because it thickened her formula so much she couldn't drink it, we are in the process of moving house and we are staying at my in laws for a month and my MiL is so scornful of the whole concept of reflux. I have tried and tried today to get her to sleep in her pram but she screams and screams. My MiL scoffs at my sling and basically told me I cuddle her too much. I have just put her to bed hurriedly (she does sleep ok at night) and she has twice choked and covered herself and mattress in vomit. I am scared to leave her upstairs even though she always sleeps from now until 2am ish I feel I am helping her by keeping her upright as much as possible during the day, in the sling or carried, she is happy and not pukey, she is fine on change mat and having increased periods when she will have a kick and a wriggle on a playmat. I think she must have it fairly mildly, but it was my HV who said that it was reflux, my GP is rubbish and basically just prescribed the Gaviscon over the phone without seeing her. Main symptom is clear liquid vomit with milk part digested coming up an hour to two hours after a feed. Also she prefers to feed little and often. Should I persevere with sling or am I saving up problems for later? I thought it would improve on it's own, I am really scared reading these stories of even after weaning it being bad. Should I take her to see GP in flesh?

No if it helps keep her in the sling! My DS was in a sling loads, it helped and he loved it. blah blah blah from people about making a rod for my back and i'd be carrying him till he's at school whatever... He's 14 months now and won't go near the sling - hates it. He loves his cosy coupe instead Keep her as upright as possible as much as possible if it's helping. Of course you don't cuddle her too much what a stupid thing to say. I would try a different GP if this one is that unhelpful on the phone he's unlikely to be any better in person. It would be worth asking about ranitidine with the digested milk coming up later does she seem in pain? That was when DS was in the most pain - the longer since the last feed the more the pain as there was more acid. If she does seem in pain ranitidine could help with that.

LO had another hospital review today and they have decided to try her on neocate to see if the reflux is caused by an allergy. Its only day one and know it can take a while to settle but she has been sick after every feed. Shes drinking the milk fine but on previous formula she doesn't normally vomit, just occasional spit up. Has anyone's baby been on neocate and how long until you saw any improvement?

Sorry im new to mumsnet and didnt even realise more people had commented on my post as my link on my phone kept taking me to page 1! Can i blame sleep deprivation??

Coasting it - i know how you feel, i get so paranoid about it all too, dont even sleep properly. Did you go back to another GP?

We also asked at hospital today about coming off the domperidone as ive been so scared after hearing the risks of it! They have advised giving the new milk a few weeks, then if that is working then wean her off domperidone and see how she goes. It really does frighten me know though, not sure if we should just stop it ourselves or take peds advice.