Reflux reassurance (sorry to keep harping on)

[lem31]

Ok, so this week baby put on renitidine and dop..something as well as infant gaviscon and lactulose. He is now 8 weeks and has been on the meds for 5 days.
I am completel paranoid that maybe he doesn't have reflux and so the drugs won't work, but also on what I should expect from the drugs anyway.
So, he is sick a reasonable amount, not like some reflux babies I would say, but laying him down even slightly flat within an hour of feeding leads to overflow. Doc suggested more silent reflux, lots of grimacing in his sleep, wet burps, hiccups etc leading to tears as it often seems to hurt him.
The main issue has been how much pain he has gotten into while feeding though. Arching his back, crying etc etc. he went in for tests after finding blood in his poo and they said reflux (already diagnosed by gp) and put him on the drugs.
BUT what if the gp got it wrong and it isn't reflux, but something else like back pain causing the issues and the GP's diagnosis stopped them looking for anything else?
He is still in horrendous amounts of pain when he feeds, to the point where I'm struggling to get enoughs food down him. They said it could take 2 weeks for the drugs to work so maybe this isn't surprising...
However, he is suddenly sleeping like a normal 8 week old, last night I had to wake him for a feed as he had slept 6 hours straight! This has happened 2 days running, so could it be the drugs kicking in? If so why aren't his feeds getting better too??

Weirdly his overnight feeds are normally more ain free. Why is this???

He is also being sick loads more as I have taken him off the anti reflux formula. Worried this is why his feeds are getting worse agan, as the sick is burning him.

I know I'm being paranoid but would love any experiences from other reflux parents.

Sorry about the long post and posting about reflux AGAIN, just totally paranoid and really upset seeing baby in so much pain.

Hi,
It's normal to worry. Reflux is such a horrible thing to deal with - for you and the baby.

Did doctors tell you to take him off reflux formula (it didn't exist when my DS2 had reflux, so I don't know whether it doubles up certain ingredients with gaviscon/domperidone etc.) If they didn't - can he go back on it?

No idea why night feeds are easier - perhaps his stomach muscles relax in sleep so they aren't as liable to spasm - but that's just a guess.

Is he gaining weight?

Is there still blood in his nappies? If so, I'd be tempted to get further checks. Don't remember DS2 having this and his reflux was severe - couldn't keep anything down at all.

Lots of people recommend cranial osteopathy. Didn't try it with DS as he also had hydrocephalus, but works wonders for lots of reflux babies.

We did learn baby massage though, and that helped a lot with the stomach cramps. You poor things. Loads and loads of sympathy here. It passes, but it's so distressing while it lasts.

Baby massage is a great idea. Will try that. Was recommended chiropractor which I did and 50 quid down and absolutely no difference. Have heard cranial osteopathy is good so maybe will try that too, but am a little skeptical after the chiropractor.
Blood has gone now, docs think it could've been from inflamed stomach lining :(
He has been gaining weight so doc has been unconcerned until the blood. I think that's insane to wait until he can't feed anymore to act, so I'm glad eventually they took us seriously, even though it took blood in his poo to do it. I'm paranoid though as he often now doesn't take more than 3 ounces in a feed, and that's difficult to get down him as he is in pain. Up until this week he has eaten well. Now he never asks for food and often cries at the sight of a bottle...
Docs didnt say we couldn't do the reflux formula I don't think, just that we wouldn't need it now, although as we agreed to take him off it I'm not sure if there was another reason for him to come off it as I didn't ask.

Thank you for your reassurance and experience. It's appreciated you taking the time to answer. X

Do you mean domperidone? I'm curious to know how you found that went as my dd had a very dodgy tummy on that (pampers sales went up by millions!). It is meant to help with delayed gastric emptying, so should help with the vomits hours after a feed - if it isn't there it can't come up! Really good stuff if your lo can take it.

The blood would worry me as the reflux would surely have to be truly horrendous to cause blood in the poo? I would be asking for trials of lactose free milk/hydrolysed milk suspecting lactose intolerance or cows milk protein intolerance (cmpi). Nutramigen aa is hugely expensive but did work wonders for both my children as the cmpi made the reflux so much worse.

Feed wise, both of mine did better asleep, this one prefers to eat while I am walking and rocking because it makes her dozy, my back hates it!. I have a feeling that she has trouble with the suck then swallow rhythm which seems more instinctive when asleep. Thickening her feeds and changing to dr browns from tommee tippee bottles helped hugely.

My 10wk dd is my second silent refluxer and is on nutramigen aa, omeprazole and carobel. It is much easier this time around knowing that it will end one day! Don't stop hounding the docs though, you will only get meds/referrals and advice if you keep asking for it. I have been lucky enough to find a doc that saw my ds and dd at their worst and was happy to give me what ever I asked for within reason.

If you are struggling with bonding (and it is hard when they scream and you don't get the cooing bits) then don't panic, it will come. It took me quiet a while with ds because we just didn't have time for the nice bits in between the food fights. Also (although it is my pet hate when hcp ignore my sick screaming child and only talk about this) watch out for pnd, you are statistically more at risk with a refluxer. Good luck!

Ps could your lo have just had a growth spurt? It is always worst right after, it will calm down again though.

Lunatic - I'm laughing at the trampoline test! Love it!

I look forward to the trampoline days!
Thanks for the reassurance. Just struggling to get food down him and it helps to know people have gotten to the other side! He doesn't seem to have had a growth spurt for a few weeks now, his feeding is getting less and less, particularly this last week. Am keeping a food diary to measure how much he is getting now too. Do you know why it's worse after a growth spurt? That's interesting...
Thank you for the reassurance on the bonding too Veronica. If one more person tells me to enjoy him while he is this age, or gush about how wonderful being a mum is I think I may cry! I love him to pieces, but am constantly worried about him, like I burst into tears whenever I think about how much pain he is in. Sleeping less than 2 hours a night isn't fun, and having a baby who I make cry every few hours while I force feed him drugs and watch him scream in pain when he swallows milk is not how I expected being a mum to be! But, when he isn't in pain he smiles and is now trying to laugh which makes it worth it. Of course in the doctors today he was smiling and gurgling at me while I was trying to explain to the doctor how dozy he has been and how much pain he has been in! Typical!

Lunatic, its good to know the pain eventually subsides. Keeping my fingers crossed...we can deal with the vomiting itself, but every burp or hiccup at the moment leads to screams of pain from him. Plus the gagging. S once the pain goes, I hope I will be left with a happy baby...

Thanks guys. Xx

The symptoms you have mentioned are also all symptoms of a dairy intolerance (cows milk protein intolerance), so if the meds don't work, make sure you go back.

The whole social aspect of having a refluxer is horrible - people expect you to love having a brand new baby and really don't understand when you say you haven't had time to enjoy it yet. Feeding in public is just embarrassing, all the helpful people that say your child clearly doesn't want to eat when they are starving and arching. I am lucky this time around that I am the first of my friends to have number two so I haven't got the perfect baby resentment so badly. With dc1 I was so envious of all the parents that were in control and didn't have to see their baby in constant pain. My relationship with one family member has been damaged because of my resentment of their perfect baby, 'after all we have the same genes' went over and over in my mind. Not rational at all but I still struggle to over come it. If you are thinking this way then you aren't the only one (hopefully you are not but on the other hand it would be nice to know I'm not that odd for thinking this way!)

The nice bit now is that I find the toddler days are my favourite, no pain and lots of cheek! I really don't harp back to the baby days like some.

I meant to say in my last post, ranitidine is very weight sensitive so make sure you keep on top of it. As your doc for the calculation so you can adjust it yourself. I found that dc1 's body got used to it after a bit and it didn't work anymore, that was when we moved onto omeprazole.

Nutramigen aa did make such a difference for us, if your doc won't prescribe it I would be tempted to buy a couple of tins off prescription yourself if you can (£45 per tin unfortunately) and then go to the docs and ask for a prescription if it helps. Nutramigen is very thin so thicken it (we found thickening feeds with carobel worked wonders anyway), it also tastes foul so worth moving over gradually increasing by one scoop per bottle each day, we didn't with dc1 and it wasn't fun. If you try it for a couple of weeks then at least you will know.

Thanks for the advice Veronica.
It is hard to explain to others what its like. Most people assume he isn't hungry or say useful things like 'enjoy this time, don't get too hung up on it...' Yeah. I have a baby that won't eat, won't sleep and is in constant pain. Loving every second of it... My nurse said the other day how in her day reflux didnt seem to exist, now every other baby seems to have it, and how I need to make the most of this time as it won't last forever. Argh, never felt more like a bad mother for making a big deal out of nothing and not enjoying being a mum. See how she would feel in our shoes.