Reflux.....me again

[Smellybears]

Sorry it’s me again with this damn reflux
Little one now on omeprazole tablets, losec mups, started Friday. He has 5mg in the morning and 5mg evening. Doctor said to either give full 10mg in the evening or split the dose. He had the liquid split which is why I thought to split the tablet dose as well? He was on the suspension but it was horrendous getting him to take it and ended up choking on Thursday night.
He’s been waking himself every half hour tonight since 8pm and I don’t know what to do flailing his arms, arching back and grunting. This is obviously keeping me awake too. I can’t remember the last time I had more than three hours sleep and I’m now struggling. He’s 12 weeks old and loads of people have said it should start getting easier soon.
Ranitidine and gaviscon don’t do anything for him. Although I’ve been told to carry on with the gaviscon so I am. He’s on neocate milk for cmpa.
Currently have him over my shoulder after a bottle.
Thank you in advance for any replies

Oh forgot to add, I keep him upright after every bottle for at least 45 minutes.
Got so many visitors coming tomorrow and I feel like telling them all no, come next weekend instead! I haven’t got the energy to entertain them

Later on today people are coming, not tomorrow!

I found ranitidine and omeprazole worked best together for my baby. The gaviscon constipated him which led to more screaming. It's so hard when they don't stop 😥 Is his cot propped up so he's at an angle?
Tell them not to come!! It's exhausting. Xx

Yeah he has a reflux wedge in his basket. I still have some ranitidine which is in date, shall I put him back on that until I can get back to the doctors on Monday? He was on the highest dose possible for his weight of the ranitidine. He definately isn’t constipated, he has a few poops each day.
Thank you so much for replying at this hour by the way!

It’s my mum that I put off last weekend so got to see her although I know she’d understand. Husbands parents who haven’t been round for a bit so got to see them. Husbands cousin and wife and kids also want to come round as they haven’t seen little one since he was a couple of weeks old. I could text his wife and ask them not to come although I know the cousin will be arsey about it!!

Yeah I was going to suggest the dose. The hospital paed put him on the highest dose, about triple what the gp had prescribed and that worked. Mine used to sleep in his swing the best. I know it's not ideal but needs must!!

I also found omeprazole and ranitidine together worked well. Omeprazole takes a while to kick in as well so at the very least I wouldn't stop ranitidine for a couple of weeks for a crossover.

Ds is 8 and been on omeprazole for years, we've only given one dose in the morning. It won't stop him refluxing but it neutralises the acid in the tummy so it doesn't burn on the way up. We use it in conjunction with domperidone.

Get them to come but can you have a sleep while they are round?

I won’t sleep whilst they’re here as I’ll feel that I have to entertain them. Little one is so desperate to sleep, I feel sorry for him 😔 also that everyone will want to play with him and mess about with him. Well, to be honest my mum will understand and will say to leave him to sleep. Not that he is sleeping! I can see him with sucking his dummy but he’s swallowing down whatever he’s bringing up. If I take his dummy though or when he knocks it out from flailing his arms he then becomes even more unsettled.

I’m probably best speaking to his specialist on Monday, even though she’s a bit of a pain to get hold of. The doctors are probably fed up of seeing me and there’s only so much they can do!

Ice bear rocks I asked the gp on Friday for domperidone as he’s terribly sick but he refused and said it needs to be prescribed by the hospital. I called them but the specialist I need to speak to wasn’t in :( neither was the feeding nurse

This is killing me, same again tonight, thrashing and screaming in pain . Poor mite is clearly in pain I’ve got him upright on me, I’ll stay like this all night if it means he gets a more comfortable sleep.
Hopefully I can get through to he specialist tomorrow although I really don’t know what she will be able to suggest

Hopefully a higher dose, don't give in till something changes. I feel so sorry for you it's so so hard. Do u have a vibrating bouncer or swinging chair? That was the only way I could get mine to sleep

The bouncer he has vibrates, sometimes he falls asleep in it which will obviously help with the reflux as it’s keeping him upright

Have you tried the prescription formula that makes like normal milk but solidifies like porridge in the stomachs ? You need to get it from a doctor on prescription. We got it for the specialist peadiatrician. Worked better than the drugs.

Oldguard no I haven’t, do you know what it’s called please? When he was on the hipp reflux milk we noticed a real difference with his vomiting, hardly any! Just a show he was allergic to it. He’s currently on neocate with gaviscon in. Tried carobel thickener but he’s allergic to that too

Shame not show

Finally spoken to one of the feeding team (his specialist is off today). We need to persevere with the tablets as they are apparently better than the liquid, she said to leave to dissolve a bit longer. She’s going to speak to his specialist tomorrow regarding adding ranitidine again too, although he’s been on that before. It seems like it’s something we are just going to have to put up with but it’s breaking my heart seeing him the way he is through the night and not being able to take away his discomfort

I’m sorry I don’t remember
I’ll ask my husband and see if he remembers
It’s not like the thickened milk tho
It “ Features a State Change from Liquid to Semi-Solidified State Depending Upon PH” so changes to a solid type state in the tummy - it was life changing for us
Maybe ask your specialist ?

She’s calling me back over the next couple of days so I’ll ask her about it, thank you!

Just a little update. He’s on half a tablet in the evening, one in the morning so total dose is 10mg. He’s normally a bit sick in the evening with it. Tried making it really watery liking the feeding nurse suggested and he pukes it up, I’ve found he’s much better taking it as a paste then give him his bottle with a small amount of water to rinse his mouth.
Anyway, he’s back to having a bottle at around 3am (he had dropped this bottle) and I lee him upright till about 4.30am then put him down. He’s then awake struggling with his reflux from about 5.30am and he can’t get back to sleep. Has anyone advice please or can suggest anything?
If I give full dose in the morning then it doesn’t last all through the night.

Try giving the evening dose in the night? I used to give mine his evening dose when he woke up about 11

The only other thing is to check the cmpa

We thought that it was that and went soy based but it turned out to not be so we wasted all that effort (not saying your baby doesn’t have cmpa - just saying it’s worth checking because if not you can use different formula)

Enfamil AR worked better than the soy based formula with the prescription medicines for us

Hang in there - you sound like a very loving and thoughtful mum

I spoke to his feeding nurse today who has spoken to his specialist. They are reluctant to change his milk again and suggested contacting my gp and pharmacy for a more concentrated omeprazole liquid as we seem to have gone backwards on the tablets. I have an appointment with the gp tomorrow to get a new script......hopefully! 🤞🏻