Any techniques to help reflux? Anything welcome!

[lem31]

In a nutshell, 4 mo with reflux, ranitidine helped then became ineffective for some reason, despite increased dose. Omeprazole isn't helping (been 2 weeks now) and is on neocate in case of cmpi, although not a confirmed diagnosis yet.
In short, nothing is working anymore. He stopped gaining weight so we ended up in hospital again.
Consultant has said not much else to do but hoping omeprazole will kick in. He is on higher concentration formula and started weaning to try and get more calories, and is having thickener to try and keep more food down.

He is still in lots of pain though and treatment seems to be at the end of the road until he grows out of it.
We raise his mattress, hold him upright after feeds. Anyone have any more suggestions for making him more comfortable? Anything you guys tred that helped??

Sorry the omeprazol isn't working for you. Are you on a high enough dose? My DD is also a refluxer and the omeprazol has helped heaps.
I know someone with a reflux baby who was worse than mine and they bought a poddlepod. They swore by it for keeping them tilted and comfy. I'm lucky in the fact my DD is ok with a tilted basket but you could maybe have a look at the pod?
My DD also likes to nap in her bouncy chair, I pad it with a fleecy blanket and it makes it nice and snug!

Great, thanks. He is on the highest doses of omeprazole and domperidone and was previously on the highest dose of ranitidine. No idea why it isn't working but docs seem to be at the end of treatment options so are focussing on getting enough calories in him to help him grow and leaving it at that. I hate him being in pain so much.
The ranitidine Did work but stopped and upping the dose didnt help either.
That sounds like a good nap place. Poor ds always wakes up within a few minutes of a nap in a pool of his sick. Doesn't matter how long I hold him for or anything, just something about daytime naps. Maybe his bouncy chair would help that.
X

That's such a shame. My DD was sick so much in the beginning. She's just getting better with age which is what everyone told me!! I've also put her in her buggy part of the pram, with a big cosy footmuff. She likes that better than lying flat.

A sling. I used a Moby wrap and Kari Me (I needed 2 so I could pop the other in the laundry).

Movement helped. I got too tired to drive so we rode the bus in circles. DD sleeping in her pram and me sleeping with a pillow on the seat. We bought a Stokke - you can get an angle as well as stay flat.

Relief - babysitter once a week. One night a week drugged on Night Nurse in the spare room, one night a month away at friends/family.

Calpol. The consultant gave us permission to use Calpol on 2 non-consecutive nights in the week. She calculated the dose per weight rather than the bottle guidelines. We dosed DD up 3 times in 12 hours and slept 3/4 hours at a time. It truly was a miracle.

The killer: time. You just have to figure out a way to survive until they grow out of it. We got a cleaner. Asked friends and family to drop in dinner. It's truly the hardest thing I have coped with.

I have 2 poddle pods for my twins, they are 16 weeks old now and love them. I also bought 2 poddle rockers which are fantastic. The twins had quite bad reflux when they were little and the rocker meant we could prop the pods up safety, absolutely amazing! They also mean you can rock the poddle pod and transport the baby from room to room without waking it. Really worth a look..www.poddlepod.co.uk

Are you breastfeeding? If so, i'm sure you've already tried cutting out wheat and dairy from your diet. Worked a miracle here- not with he vomit, but with the pain.

Otherwise, oh yeah to getting more childcare and walking roind the streetd.

Have you tried a cranial osteopath? What about sleeping on their front? You can get some pretty extreme angles with a tucker sling, I haven't used one but came close! I wedged (better angle than propping up the end of the cot for sleeping on their backs) then moved to front with propping up one end of the cot + a breathing monitor and fan to keep the air circulating. Dd is also on max doses of ranitidine, domperidone and omeprazole and takes nutramigen aa thickened with carobel but dds reflux is silent and she has been gaining weight. We started weaning at 4.5 months and she is very slowly getting better, she still has a bottle aversion but has moved from us only being able to get a bottle in while she is asleep to her being able to take milk as she falls asleep (less disturbing compared to risking waking her mid nap). She would still rather go hungry than drink milk when she is awake, I think most of her problem is learned behaviour now rather than pain. It's been hell but she is getting there, I hope your dc does soon.

Ps if omeprazole isn't working then try asking them to give your doc a prescription for lansoprazole, it's another proton pump inhibitor but would always be worth a shot. Just to check you are giving the omeprazole (not in milk) 30 mins before a feed on an empty stomach ie 2hrs from the last milk feed, split into 2 doses over the day with at least 2hrs between a domperidone and omeprazole dose? Dd has 6 doses over 24hrs, it is such a nightmare timing them all around feeds etc, knowing what she is going to want next and when the medication window is is a nightmare!

It costs £260, but if you have it you could try a private appointment with Dr Shah at great ormond street. He is the uk no1 in the field and is doing cutting edge work with low level antihistamines and antibiotics.

Also, we found dr browns gave the smoothest feed when she was willing to drink

Ds was also hospitalised due to poor weight gain - he would never sleep unless being held or being walked in his pram. We tried a poco baby hammock and it was a miracle. He looked so comfy in it and he slept straight away. Best thing was we could retreat to our own bed for a bit! Weaned at 4 months on consultant advice which really helped him. Now 7 months, off all meds and up to 75th centile of weight. It will get better, hang in there.

Thanks guys. Amazing advice, well timed.
We have just been admitted to hospital for a third time due to poor weight gain. Unfortunately consultant had decided I was a neurotic mum before coming in and told me there was nothing wrong with him (despite 4 weeks of weight loss or minimal gain and a similar pattern the 4 weeks prior). Suggested weaning which we had started last time we came out if hospital(based on other consultants advice). He had started brilliantly, totally loved it for 3 weeks, ate loads of mushed foods, was just loving it, only to start crying when offered it and now won't touch it. When I told consultant this he said not to worry he is getting all he needs from his milk. I explained his lack of weight gain was because he is drinking around 10-15 oz less a day than he apparently shoukd be, to which he replied that my anxiety was obviously causing the problem. That maybe he did have a 'touch of reflux', but he'd grow out of it so not to worry.
I cried. I don't think I've ever been so crushed than to have someone tell me it is all my fault. I was told to go in the last 3 times - I didn't choose to! The consultant I saw before told me his weight gain wasn't good enough, along with the gp, hv, registrar, dietician.... And no one else can get him to drink properly - they have tried. But he suggested the nurses there know how to feed properly so could tell me what I was doing wrong. Needless to say, they didnt find fault. Just feels so shit when he doesn't sleep properly and every last drop of energy I have goes into helping my son have a happy time. I do everything to get him to eat - sing songs, put him to sleep, stay home, make him homemade foods...then cuddle him when he is upset and in pain cos he has thrown it all up again.

Upshot is they have tried everything they are prepared to and have just added extra calories to his milk to boost his weight.
I was told it didn't make a difference when he has omeprozole in relation to food. We have been told 1 dose per day (max dose). Did you find the timing with regards feeding (empty stomach etc) made a difference? I can try this. Can't split the dose though as I'm too nervous to ask docs question about it as they clearly think I'm making too much of it all.

Good suggestion on the baby whisperer - thanks. My sis swears by her so if she knows about reflux issues too I will check it out!

No longer bf as I couldn't handle the screaming while he fed. FOr some reason he was better on formula for a while, but as with everything he eventually got bad on that too. We tried neocate for cmpi but it didnt help.

We are using dr browns and I wish we had found poddle pods from the start as they look amazing. As he is almost 6 months I will wait and get the toddle pod though.

Despite the solids going very badly now for some reason, he has had a couple of good milk days so who knows, maybe we are finally getting out the other side. I hope so. I am exhausted, feeling pretty awful about my parenting skills and my Dh doesn't get why I'm not my normal self and has threatened to leave me. All in all I think its safe to say this has been a pretty poor week.

It means ALOT you all taking the time to give me advice, so thanks. X