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GORD reflux - difficulting increasing milk intake

(31 Posts)
ladybird182 Tue 21-Jul-15 07:45:22

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.

Superworm Tue 21-Jul-15 09:14:36

My first thoughts would be cows milk protein allergy. DS had similar choking episodes at 5/6 weeks old and he was referred to a gastro pead who diagnosed with dairy & soy allergies (after a period of exclusion). The allergies caused awful reflux which improved once both were eliminated.

DS was breastfed so difficult to tell how much he was getting but I fed him little and often, every 1.5-2 hours until he was 4-5 months and big enough to cope with a bigger feed.

ladybird182 Tue 21-Jul-15 09:29:32

Hi Superworm...

Thanks for your reply. We have asked about a milk allergy each time we have been at the hospital, the doc said if she had one it would show in her skin and as there are no signs there they are not willing to look into this. Did your DS have any other symptoms aside from the reflux??

Maybe we should reduce feeds to 2.5 hrs. when the hospital put us on the feeding plan they said it was crucial not to over fed so we must wait until 3 hours to feed her again. This has been really hard but she will need some milk increase at some point.

GraceGrape Tue 21-Jul-15 09:40:29

Two refluxers here. Reflux babies are often intolerant to cows milk protein, not allergic, so the symptoms don't show up in the skin or in a test. The only way to establish it is with a dairy-free trial. Try to get to see a paediatric gastro-enterologist if you can.

The other things to do are to make sure you get the correct dosage of medication - it has to increase with their weight. Also, with ranitidine, there is a range of safe doses. We were started on the lowest safe dose, but then increased to the highest as dd1 needed it. A final thing that worked with dd1, who was formula fed and very sicky, was to thicken the formula with Carobel, which is available over the counter. I used to make it really gloopy so it stayed in her tummy better. You need a variflow teat if you do thicken it. Also, don't use carobel if they are already on Gaviscon. IMO, carobel was better. Hth.

GraceGrape Tue 21-Jul-15 09:43:17

Also, re the feeding, little and often is best. Dd1 used to drink half her bottle then refuse. We waited for 45 minutes to an hour, then she would drink the rest. Others I know have fed smaller amounts every 1.5 - 2 hours. A big feed every 3 -4 hours is not good for reflux.

GraceGrape Tue 21-Jul-15 09:46:13

Sorry, one last thing! If the incidents are worse at night, have you raised one end of her Moses basket or cot? Reflux babies also often sleep better on their tummy or side, although you have to weigh up the risks. Some people do it with a breathing monitor.

ladybird182 Tue 21-Jul-15 09:47:34

Hi GraceGrape,

I will call the hospital and ask if there is a gastro-enterologist that we can see. fingers crossed they refer with no probs.

She has had her omprezole increased to 5ml each morning and her domperidone is 3 times a day. When we last visited they told us that her meds would possibly need increased with her weight but on the last phone call yesterday we have been told she doesn't weigh enough to increase it. Review is not until October but will hopefully be seeing someone before then!

Thanks for the tip on Carobel, we will check that out

ladybird182 Tue 21-Jul-15 09:55:13

Yeah we have raised crib, she sleeps on tummy in the day when we are around and watching, kept upright after all feeds for a while, well winded.

She doesn't actually sick up, she only occasionally spits up after feeds, the choking incidents she has lots of foamy salvia due to the acid.

GraceGrape Tue 21-Jul-15 10:09:31

Your gp can also adjust the meds dosage if it's easier to see them?

Superworm Wed 22-Jul-15 12:58:02

DS had other symptoms such as green poo and was quite mucousy as a newborn. As he got bigger reflux, dodgy poo and poor sleep were the only symptoms.

There are two types of allergies, immediate and delayed. Immediate are the hives, swelling type and delayed are often confused with intolerances but is incorrect as the immune system is involved. Delayed allergies won't show up on skin pick test and are only diagnosed by a period of exclusion and then challenging.

In your position, I would be pushing for a trial with a hydrolysed formula or neocate to see if things improve.

AndThisIsTrue Wed 22-Jul-15 13:07:23

Before reading the comments my first thought was Cows milk intolerance. Ds never had any problems with his skin just seemed uncomfortable and squirmy and didn't sleep. I would second getting some carobel, that stuff is brilliant you can ask for it on prescription. Definitely ask for hydrolysed formula to try as well. It was Neocate,carobel and omeprazole that was the magic combination for us.

Superworm Wed 22-Jul-15 13:08:58

www.allergyuk.org/childhood-food-allergy/food-allergy-in-babies-and-children Allergy UK have some useful info.

Delayed allergies tend to start showing symptoms around 5-6 weeks. It's pretty unusual for babies to choke on their vomit but of the ones I know that have, it's always been allergy related.

captaincake Wed 22-Jul-15 21:36:56

My little boy was like this. He still has gord now (14mths) Things that helped us:
- Removing dairy and soya from my diet (bf) then when we moved to formula used neocate. Since weaning we've found he's also intolerant to several other things. Ask dr for a partially broken down protein formula for a 2 week trial - nutramigen lipil 1.
- Proper reflux wedge under mattress and velcroed him in a special sleep positioner to stop him slipping off it.
- Never ever lying down flat - even quick nappy changes had a pillow under the mat
- Baby bjorn bouncer chair
- Omeprazole and domperidone
- Now he's older we've found out he has a swallow problem and thicken his drinks. If we'd known before and thickened his milk it might have helped. Carobel or thick and easy.
- He only slept on me during the day
- A sling

captaincake Wed 22-Jul-15 21:40:19

and little but often feeding.

gordonpym Wed 22-Jul-15 22:10:55

DS2 had very severe reflux and was put on Lanzoprazole, not omeprazole. It is trickier to give as it come in pills which need to dissolve in a spoon of water but we were told it worked better . Lanzoprazole doesn't come in infant dose, so first I had to cut the pill in quarters, but soon the dosage was increased to half a pill. It certainly did make a huge difference. You can read more about lanzoprazole here www.ncbi.nlm.nih.gov/pubmed/11856076

We were living in Italy at that time and I felt so lonely. I found this site extremely useful www.cryingoverspiltmilk.co.nz.

Sorry I don't have more time now, I need to wake up the kids for school (we are in Australia now) but I'll come back.

gordonpym Thu 23-Jul-15 05:39:22

I wanted to add, it takes a while to find the right dosage for any medication. By the way, are you aware domperidone is under investigation and shouldn't be taken for long period www.gov.uk/drug-safety-update/domperidone-risks-of-cardiac-side-effects.

Reflux is horrendous. DS2 had several apnea episodes, which were quite scary. We had testing done, with a scanner and ph reading, but then they just confirmed it, so you can skip that part.

It will get better. And before getting better, it may get worse when you start weaning, so do not rush there in the hope of solving the reflux.

DS2 started getting better at 8m, but was on a no dairy, no wheat, no eggs (and poultry), no citrus diet until he was 2y. He is now almost 9, a strong and tall child, and I like to say he is the happiest boy on earth because he cried all the tears his body could produce in the first 8 months of his life.

what helped with him was walking for an hour after his feed, all the while gently taping / rubbing his back. Certainly not easy to do at 2am, when you are so tired you feel physically sick.
When she had the accident last morning at 5am, how long before did she have her bottle? Dis she fall asleep while eating and did you just leave her or did you try to make her burp?
I agree with a previous poster. Often and little may work better than 60-70 ml every 3 hours.
There is no magic recipe with reflux. Every child is different, you need to try what works for your DD.

I almost forgot. My Ds had lansoprazole mornings and evenings, not only in the morning.

ladybird182 Fri 24-Jul-15 19:56:28

Thanks everyone for your advice.

Our LO has been a little better today but still had an episode in the night. We have just got off the phone to the doctors and they are going to be increasing her doses.

Gordonpym - I will mention about the domperidone when collecting her paperwork tomorrow. Hopefully the dose she is on is safe, I am sure they wouldn't put her on something that wasn't safe??! Has anyone's baby had problems on this medication?

My friend works in a neonatal baby unit in Oz and she mentioned to me about the neocate, so we have pushed for that to be trialled but no joy. Its only available on prescription isn't it?

She had really improved for a few weeks and no symptoms but I guess they creep back in as they grow.

Passmethecrisps Fri 24-Jul-15 20:03:17

My first thought was cmpi. As an intolerance i won't show on the skin like an allergy would.

My dd ended up in hospital being tube fed as a result of reflux at about 4 weeks old. She started on ranitidine, domperidone and infant gaviscone. She would still have very fussy periods and her milk intake was relatively low. Eventually she started dropping through centimes again so she went on omeprazole which was a total game changer. She needed weighed every month and her dosage was increased regularly to keep her well.

Best of luck

ladybird182 Sat 25-Jul-15 08:16:03

Shes is now going to get monthly reviews for meds dose. Starting on increase today so fingers crossed there is an improvement.

Passmethecrisps- How is you DD now? Hope she is well

BabyMum1 Sat 25-Jul-15 10:03:33

We had silent reflux crying for 6 hours daily till we got Klaire labs probiotics and it cleared in a few days!! Reflux is ALWAYS allergies unless she has an anatomical issue which u wud know about!
Also domperinone is highly dangerous and there has been a warning in this country against it since last year!
Get her off milk protein till her intestines heal give some good hypoallergic pre and probiotics and she ll be fine in a few days
These drugs are messing with her digestion (paid a fortune to a a top gastro constant to be prescribed these crap, where solution was easier and quicker!)
Good luck x

Passmethecrisps Sat 25-Jul-15 10:19:05

baby while there is no doubt that probiotics help restore the gut flora damaged by intolerance and repeated gastric irritation it is unlikely that it will fully treat a child with apnea caused by gerd.

It often is an anatomical issue - the body isn't preventing the backwash of acid. That can be resolved in part by holding the baby upright as much as possible including sleeping in a raised position.

I have looked for the official warnings on domperidone and can find a daily mail article which is worrying but not an official statement. However, we did find that dd was no worse off it that on so we took her off it purely to lower the number of medications she was on.

The treatment of gerd varies from child to child - some will need a lot of medication and others can be treated with changes to diet. It is important that parents don't feel scared or guilty for giving medication which can actually save their child's life in the event of severe apnea. I am glad your dd is well now - silent reflux is awful!

ladybird dd is absolutely 100% better. She grew out of of intolerances, allergies and reflux by 1yo. She has also caught up on weight and no longer has that slightly fragile look about her which she had for her first 18 months.

BabyMum1 Sat 25-Jul-15 10:46:57

When I say anatomical issue I mean the kind that is resolved with surgery only to older adults

I do believe the younger the baby the easier to be resolved with probiotics and elimination diet in the case of bf, the more u leave it and the more meds u get the worse it gets
The biggest reason is that food/milk not digested properly hence a secondary level of acid (not original stomach acid) builds up and goes up the oesophagus.. Thankfully I found a good private pediatrician who explained and helped massively ..
About domperinone even my gastro consultant told me it's proved to be dangerous - he was willing to give anything else but not this

Passmethecrisps Sat 25-Jul-15 11:01:39

That makes sense.

My dd was on prescription formula so elimination occurred by that. It didn't stop the acid flair ups for months until she grew big enough for her body to manage it.

At the end of the day it is awful and whatever works.

gordonpym Sat 25-Jul-15 21:43:09

Here is a link to the US Food and Drug Administration about domperidone. FDA and here www.medscape.com/viewarticle/780493. If I am not wrong, in the UK, its use must be limited to one week. The study analyzing the dangers and risks involved only adults, not children and certainly not infants. If you are able to read French prescrire.

My DS2 had a wrong shaped stomach, instead of looking like a vertical pear, it was a flat potatoes. So no amount of probiotic can solve that, only growing up, and slowly changing shape. That's why weaning made things worse, because liquid exit the stomach quickly whereas he would choke on solid, even very diluted purees.

BabyMum1 Sat 25-Jul-15 22:36:29

Gordonpym sorry about ur ds2, I'm sure shape will get better when he's an adult! That's an example of anatomical issue I was referring to which yes admitedly won't be solved with probiotics etc
My mil and her brother have something similar, the valve of the oesophagus is not straight so they be been having reflux all their lives.. Her brother did a surgery to correct it but it came back.. My mil wont do surgery but she lives with it she just adjusted her diet to not cause any upset ..

Good luck with ur boy xx

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