CMPA

[Pregnantmumma123]

Hi,

I have two boys - nearly 3 yr old and 6 week old....
I'm at my wits end.
My 6 week old has cows milk protein allergy and severe reflux. We are on nutramigen AA (amino acid formula) and ranitidine and still having issues 😞 He cries for up to two hours after a bottle and each feed just rolls into the next. He comfort feeds, has disturbed naps through the day, fusses when feeding and night feeds are long and unsettled. Hes under the care of the paediatricians at the hospital now after going to A&E after the screaming got too intense and he was moved onto the dairy free nutramigen. Things have improved since this but still so unsettled, they won't change anything until we have trialled the nutramigen for 4 weeks - another whole week to go and I can't see that far away right now.

Obviously my eldest has been used to having my full attention and is now getting absolutely none of it, I have to make his lunch the night before as I simply don't have time during the day. I feel like I can't leave the house, the baby is either crying or feeding and my my toddler acts up too. His behaviour is awful, he's also recently made a habit of getting up in between the baby's feeds and then up for the day at 5.30am. I'm exhausted, I feel like I'm getting no help for my baby who is clearly still struggling and I don't quite know what to do or how to manage 🙁 Anyone any experience of nutramigen AA or neocate (which will be the next one we try....?)

Really sorry to hear how hard things are. I don't have experience of the formulas but just checking -are you mix feeding (breastfeeding as well) or exclusively formula feeding?

If mix feeding, you do know it could be something other than dairy as well - eg soy?

What were the symptoms that suggested CMPA initially?

(sorry not to be more help. Hopefully the more experienced mums will be along soon).

I don't think that formula is completely dairy free, just very hydrolysed so you may need to move over to something like neocate to be completely dairy free and you may see a huge improvement.

You have my sympathies, cmpa was a nightmare here and I look back at those first few months with such sadness but it does get so much better.

Hi OP,
I'm sorry you're having such a difficult time.
After a struggle to get my DD diagnosed she was at first put onto Neutramigen, although some of her symptoms improved many did not. She was then put onto Pepti Junior which really disagreed with her until eventually I begged the dieticians to let us try Neocate.
It alieviated all her symptoms instantly and it was like someone had flicked a switch. I can't tell you the relief I felt. The only thing I can suggest is to be persistent as we struggled so much to get people to listen to us. You know your child so please stand your ground. Maybe a diary of his symptoms would help over the course of the next week? Do you have a number for the dietician if you had a weeks worth of evidence they may switch you sooner.
Be warned though if your child does get out onto Neocate it is very unpalatable and we had a dreadful time getting DD to accept it but she was around 6 months before we finally switched so hopefully your child will be more receptive.
I know how awful It is having a baby affected with CMPI let alone having two.
Good luck!!

I meant having an elder child to look after too! Sorry typing on my phone!

I might be wrong but I think Nutramigen AA is elemental (like Neocate) and not just extensively hydrolysed. So, it will be pretty similar to Neocate.

It's so hard OP, you have my every sympathy. Is there anyone at all you can call on for help? Could your partner take a bit of unpaid leave if you have one/ this won't kill you financially? Yours or his parents? Siblings? If someone could mind the both of them while you get out a bit (or go somewhere quiet to sleep) then that's even better.

It may be that your baby needs something like Lansoprazole orodispersible (sometimes they prescribe omeprazole but it's harder to administer) rather than ranitidine.

4 weeks sounds rather a long time to have to wait, I imagine if the Nutramigen AA is going to work then it will start to work somewhat quicker than that. I do know that proteins take time to leave the system but still ...

My baby ended up on neocate. All his symptoms disappeared. He was a lot older than yours though and really didn't like the taste so would only drink the minimum. Hopefully your LO is young enough not to be so discerning!

For reflux we tried a combination of ranitidine and domperidone, then omeprazole and domperidone. Reflux has pretty much hone now, but it's taken 18 months.

Stick to your guns with the paediatrician and insist they try different things until you have something that works.

it might take a while for your babies gut to heal from the damage from drinking the allergen.
Things should improve, it takes a while for some.
This is a very difficult period for you but things will improve eventually.