reflux advice AGAIN

[ledkr]

posting on here cos thought i may get more response,the support threads have been running ages and are very crowded i wondered if anyone has any experiences which would help me.
Dd is 7 wks and has silent reflux,she also has a cleft palate. Her rfeflux is a lot better since starting omeprazole and increasing the dose to 10mg.
During the day she occasionally has it after her feeds and we do have to keep her upright as much as possible and she can be a bit difficult to put down but we can manage.At night she is really good and sleeps for about 7 hrs eg 8-3 ot 7-2 and last night 9-4.She fusses a lot over that feed-bottle-and then is kept upright for 30 mins before settling for around an hr in her well propped moses.She then starts to get terrible reflux,not awake or crying but gagging and coughing and grunting and squirming,i get her up and she still struggles but its intermittent as long as i hold her bolt upright.She settles after about 3 hrs which is then getting up time for me so my day is begining any time from 2 onwards dh is great and does his fair share but obviously works full time.Any siggestions?
I cant sleep bolt upright,i did consider putting her in her swing as she can be fairly upright in that or maybe a pillow in her basket (i have a matress sensor alarm) i am lost,dont really want to increase the meds if i can help it.I give it at about 6pm,do you think i should give it later?How long does it last?It seems to do the trick in the day.
Thanks for reading.

tired bump

so sorry . before we got dd's cows' milk protein allergy more under control, i found that smaller feeds were easier for her to cope with. if she got too hungry then the feeds were really bad and she was very distressed and she was in a lot of pain afterwards. i think this was firstly because she was drinking it all so quickly and secondly her stomach couldn't cope with the volume of liquid she wanted and needed to drink. could smaller and more frequent feeds help your dd? I know there is a school of though that you should never wake a sleeping baby. but we did in order to feed.
which milk is your dd on? has she been referred to a specialist gastric paed? if not, i think you should press for this - one of my bug bears is that gps and non-specialist paeds often faff about with meds at too low a dose to actually do a proper job. has cows' milk protein allergy/intolerance been suggested?

i don;t know about the timing of the meds - i gave dd her's at he time of day when she was most receptive and least likely to spit/vomit it out. i think the effects of the omeprazole should be constant throughout the day.

XXX

Thanks,i am wondering about the milk to be honest,i was going to try enfamil but she is on infatrini high cal due to poor weight gain.She is hardly sick only a slight posset and def if we lie her down to soon.
We are seeing a normal paed,and have an app with a dietician,are gastric paeds on the nhs?I dont mind paying if not.
What you say makes sense as its the only time of the day that she fusses over the feed,seems starving and then sucks but cries as soon as she swallows it,i have to keep persevering untill she eventually takes it.
Im unsure about waking her but may try,the last time i did she went into a 2hr feeding frenzy all night,at least at the mo i get about 4-5 hrs.I would be worried about waking her at say 12 and then the whole reflux thing starting again. One dr said she could have 15mg omeprazole but cleft nurse thought try the 10 first,what is your dd on?I absolutely hate giving her meds dont you?

yeah you can see gastric paeds on the nhs - and the one you are seeing might have a particular interest in that area even if she/he doesn't specialise in that area professionally. i suppose you could google them and find out. if they don't have a special interest and you don;t feel you are getting anywhere, ask to see someone else. we ended up going to see someone at great ormond street - are you in/near london?

we were on 15mg lansoprazole. and at one point were on ranitidine and dom peridone as well. i remember the first time i had to give her medicine at the age of not quite 3 weeks, it was terribly upsetting. i felt like a complete failure as a mother. she's now 6 months and although she is now medication free, she was on all sorts of things for months and we had inpatient investigations - the works. so i just had to toughen myself up! personally, if you have been told 15mg is appropriate, i would go for 15mg, and i'd give more weight to what the doctor said than the cleft palate nurse. you need to find a dose that definitely works and then if, in time as she gets older maybe or other aspects of her problem come to light and are resolved, you can think about reducing the dose, then fine. but i'd hit it as hard as is necessary first.

with dd is was definitely cows' milk protein allergy - and the thing that made the biggest different was getting her off all cows' milk. started on nutramigen, but it was still causing her problems so went onto neocate which is an amino acid based formula - never been near a cow at all! i don;t know whether its appropriate for poor weight gain. and of course your dd might not be cmp allergic. worth bringing it up though - and maybe they would consider a trial of a week or so on neocate to see? although it takes a good few months for all the symptoms to disappear, the immediate benefit of going off cows' milk is dramatic and unmistakable.

so hard to know what to do about waking them up sometimes - if they don;t scream one night and then do scream the next you drive yourself mad trying to work out what you did differently.

XX

How does she wind? I used to find it terribly difficult to wind a sleepy baby but have a technique if you want it, let me know. I used to need to get at least a couple of burps out before DS would sleep well.

How long has she been on the meds? It does take a couple of weeks to take effect - 10mg is a fairly big dose for a 7 week old, its the same as my 17 month old is on (although he's only ever needed the standard dose of 1mg/kg). I agree from what I've heard adding in domperidone or investigating intolerances could help rather than increasing the dose of omeprazole more.

I also had a discussion to a friend of DH's who is a paediatrician not long after we started the meds and he was saying how safe it was and how not to worry about medicating such a young baby. He basically said it works really effectively without any long term effects on the body i.e. changing the way the stomach/bowels work etc.

I found an Amby Nest brilliant for sleeping and settling and you can raise one end slightly. DS's sleeping improved dramatically once we got the hammock and if he woke up, often a push of the swing would be enough to send him off again.

Sorry also meant to say poor you and hope you get it sorted soon. Reflux is a awful thing for you and your LO to go through and so hard to handle.

I would love to know your method for burping a sleepy baby!!!

Ok here tis, you might have heard it before, its very simple but I found it brilliant!

Sit them on your lap, facing forwards with their back against your chest. Then wrap your hands around his torso with the fingers in front over the ribcage, and sit there for as long as it takes (10 minutes or so usually). Apparently the warmth from your hands helps the wind come up.

The worst bit was when he used to burp so hard, it woke him up again and he would want to comfort feed himself back to sleep.

Reflux is so hard as different things work for different babies. We did the keeping upright for 30 minutes thing and it seemed to get the wind 'stuck' down there. I ended up laying him at a 45 degree (or so) angle and watching for any windy signs, then as soon as I saw him, whipping him up for a winding session. Worked best for us. Goodness, this is bringing back those days of marching up and down the stairs with him too...

cool!! thanks

Just joining in to say that these are all very helpful. Thanks! (typing holding a sleepy reflux baby who hasn't burped but had PV all over me 30 minutes ago)

i have spent most of the day holding dd,or giving her little feeds,my arms ache as i have to hold her right up or shes unhappy,i feel sad about wishing her life away and not enjoying my last newborn.tis a bit joyless tho isnt it?

I know I keep banging on about it and apologies if I've suggested it before and it didn't work:

DD simply would not sleep on her back - she'd grunt, cough and choke about five minutes after she went down. At around one month, I gave in, got a breathing monitor and let her sleep on her tummy. The transformation was immediate, she's since slept for 10 to 12 hours with one or two quick feeds. As you have a mattress monitor anyway, give it a try and see if it helps. The weight of their tummy helps keeping the sphincter in place when they sleep on their front, that's why reflux babies tend to sleep better that way.