Struggling :(

[Smellybears]

Don’t know what to do. A few of you will probably recognise my name and see that I’ve been posting about reflux and cmpa.
My son was finally diagnosed on Friday with cmpa. He’s been diagnosed with reflux at about 3 weeks old, gaviscon did nothing and the specialist stopped the ranitidine on Friday (to be honest it wasn’t really doing anything). Anyway, little one is ten weeks old and started nitramigen on Friday which has helped a lot with his poo, he was having 12-15 diarrhea poops a day, now a lot less. I’m really struggling though and don’t know what to do. Baby is now drinking less milk, I struggle to get three ounces in him every 3-4 hours. He’s then sicking skit back up. Ive only managed to get an ounce in him now as he’s scrunching up in pain, screaming, arching back, straightening out, stomach gurgling. I couldn’t get him to have anymore.
Through the night he’s hardly slept. The past few nights I’ve had about two hours sleep and last night it feels like less. I’m now struggling and really don’t know what to do. I know if I call the specialist she will say that I haven’t given the milk long enough to work yet.
I don’t really know what I’m expecting in replies, I’m just sounding off I think

That’s amazing - I’m so happy for you. It must feel like such a relief and it must be amazing to see your baby happy.

I really hope things continue to get better and better

Thankyou! It’s so good to see him enjoying his milk now. Just need to get this reflux sorted now!

Oh OP, well done for persevering with the diagnosis/doctor/specialist, I really hope things to continue to improve for you both.

I have a telephone appointment with the doctor on Thursday as I’m sure my DS has CMPA, reading your post makes me think you’re talking about my DS! He squirms, arches his back, vomits, has restless sleep, basically everything you’ve described. What should I say to make sure I get a prescription of milk? Sorry to hijack your thread.

Make sure you take videos and show them to the gp! Pictures as well if he’s getting a rash and swollen eyes.
To be honest I ended up having to take my son to hospital as he was so ill and it was there that they referred him to a specialist. My doctors were awful, I saw 4 different ones and they all said that ‘it’s highly unlikely he’s got a milk allergy as it’s extremely rare’. Well I knew I was right!
Massive good luck, make sure you tell them that you think it’s a cows milk allergy and that you’ve researched it. Post back to let us all know how you’ve got on

Thank you OP, good advice

Neocate is the stuff of gods, my son was completely different after a day and it got better and better. Nutramigen helped a bit but it didn't last long, that's the worst bit when you think you've got it sorted and then panic that they'll make you persevere for 2-4 weeks I hope you've found the right thing for your baby op and you can take a minute to relax and enjoy your son. It's bloody tough!

Ponder land did you find your little ones reflux improve on neocate? So glad you found that it worked, it’s awful seeing your child suffer and not knowing how to help and the doctors not helping either!

My reflux baby also has dairy intolerance, and neocate really did make a huge difference. She finally started to drink for more than a minute at a time, and finally didn't experience pain afterwards. Took a week to reap all the benefits and was combined with reflux medications. You need to insist your gp prescribe it. It's the most expensive formula so they are always reluctant. Just tell them your baby isn't drinking anything and gas stopped gaining weight, and they will have to take notice and give it to you.

Sorry didn't realise you'd already had it prescribed! So glad it is already helping.

@Smellybears we got prescribed ranitidine and nutramigen at first, then they switched the nutramigen to neocate and he was so different so I just kept on with the ranitidine along side it. I'm not entirely sure if he had reflux past his first few months/after symptoms went but I didn't want to risk him going back to the crying.

How is he doing now? I hope he's settling.

And yes I agree it's horrible! We didn't get him diagnosed till 4 months, everyone kept telling me 'babies cry, it's normal!' Until my parents stayed with me for a few days so I could shower and eat etc they told me to take him to the GP. Who did fob me off but I booked another appt and gave him a milk feed just before so he was in full on screaming/thrashing mood. That put a rocket up their arses he's 22 months now and still on neocate, he loves it at bedtime still and will only drink it in a bottle. We've tried the milk ladder a few times but I'm just relaxing with it all and enjoying him been happy!

Hi OP, DS has just been allowed a prescription for Nutramigen. Fingers crossed it works so we don’t have to medicate him.

That’s fantastic! Well done fingers crossed it works well, my little one was on it but ended up on neocate. He’s on gaviscon and ranitidine but has been prescribed liquid omeprazole which has been ordered for me to collect tomorrow.

We’ve tried Gaviscon but it made no difference. Just about to give DS his first Nutramigen bottle.