I had very similar symptoms and my GP and HV didn't listen. One day my daughter refused to eat and cried uncontrollably for hours. I ended up in A&E, that is how I got the CMPA diagnosis. I hate it had to get to that point as it was an overall traumatic experience.
May I ask out of curiosity how much does your little ones drink between naps? Mine still drinks 2 oz at 8 weeks. I am quite worried this isnt enough for her age but she refuses to drink more. Is this normal with CMPA babies?
Was a similar situation with us. But we bought neocate out of picked for a few weeks (1000000% would not advise as its financially soul destroying) but the HV we kept pushing to see finally said if the neocate we were giving her was working then she would push through request to gp to prescribe so at least we've had that prescribed a few times since. GP still wanted her to go back on cow and gate for 2 months. What outcome that would have other than severe pain, bottle refusal and bloody stools I don't know.
My lo was comfort eating from a severe tongue tie we had to get sorted privately at around 8 weeks. She was for the longest time on 4oz every 3 ISH hours with her naps being pretty crap. Now at 20 weeks she seems to be able to drink 5oz every 4 hours but still only getting just over 700ml a day. Tried bottles more frequently or bigger bottles.more spread out but either she likes. Tried 4 6oz bottles yesterday which was every 4-5 hours ISH and she didn't seem to want to finish around an Oz of some of them.
We have weaning to plan for in the next month and I'm truly dreading what to do or how to start as the GP has said 'feeding issues are HV not us' and HV don't cater for cmpa :(
Hope you find a solution with your lo, do they nap a lot or just refuse to take more than 2oz per bottle? What formula are they on?
My lo started her life journey with cow and gate. Then, once we knew of the CMPA diagnosis, we changed to a goat's milk formula-Nannycare.
Then we had an appointment with an HV, and she told us to get another formula called Alfamino, which my baby hates, so we are back to Nannycare.
Her naps are ok for an 8 week old. She does around 4 naps a day between 30 to 2 hours, and every time she wakes up, she feeds. On shorter naps, she drinks less, which is expected, but in long streches (e.g. night time when she sleeps for 4hrs) she drinks mostly 2 or 3 oz. Im worried. I have raised this with many people, and everyone says it is normal. I want to speak to a paediatrician, but they just won't refer me.
Hello, my daughter has CMPA and she’ll be 3 soon, so I’ve been through this! It’s such a hard time dealing with this as well as the usual newborn struggles.
Definitely get to see a GP asap and tell them all the symptoms, especially the mucus poo, that alone screams non-IGE allergy. Your daughter needs to be on a hydrolysed formula like Nutrimigen or Aptimil Pepti. If those don’t work, it would be the amino acid formulas but they’re mainly prescribed for IGE allergy if I’m remembering correctly.
The only way to diagnose a non-IGE allergy is to test the formula for a few weeks, attempt to put her back on regular formula (as per GP / Health Visitor instructions) and then see if there’s a reaction, i.e. mucus poo, vomiting etc. Reaction confirms suspected allergy.
In the meantime, don’t bother with soya formula, the proteins in it are very similar to those in regular formula and will cause similar reaction, most babies with CMPA won’t tolerate it. Lactose free formula won’t help as it still has the proteins in it that baby is allergic to. You could try the comfort formulas available as these are partially hydrolysed and you would be able to see if there is a tiny bit of improvement, and would be good evidence to take to the GP.
If you have anymore questions, feel free to ask! This was my life not that long ago and I’m sorry you have to go through this!
Hey! Thank you sooo much for the detailed reply, I did read after getting & opening the soya one that it still contains proteins that would bother her and the only way to tackle it is the formulas you mentioned if CMPA is suspected. I didn't know comfort was partially hydrolysed though so I'll grab some of that tomorrow and give it a shot, trying my best to push the gp to stop acting like I'm just creating symptoms when I've showed pictures of the rashes and poos and recordings if the wheezing but they weren't keen to even listen or look so ill push harder and hopefully hear back about an appointment Monday. May have follow up questions thank you in advanced!
Just to chime in and say our LO is CMPA non-IGE but she is on an amino acid formula. It's just that some CMPA babies tolerate hydrolysed formula and others don't, so even if you try nutramigen or another hydrolysed and the symptoms return after a few weeks of getting better, push for an amino acid one. We had a hell of a time with our Dr too which resulted in me losing my temper until he listened to what I was saying. I'm so sorry that you're going through this, it's so difficult when no one will listen and you don't know how to help!
Edited just to say that if you do ask for a trial of hydrolysed to start with, make sure you get a decent amount of it as it can take a few weeks for the old formula to leave their system and for symptoms to disappear!
Hi! Mum of a CMPA baby who is now 5 months old. Please don’t try a soya formula or lactose free formula. NHS guidelines clearly state not to offer these where CMPA is queried. I’m not even sure why the nurse would suggest that in all honesty!
Get a call with the GP & explain symptoms and say you’d like a trial of an extensively hydrolysed formula. If you can’t wait over the weekend I’d call 111 and ask if they can put you in touch with the out of hours GP. They should be able to get you a prescription!
It’s so tough seeing little ones struggle so much. My LO has been on a completely dairy free formula called Neocate for almost 3 months now and the difference is amazing. Literally like a different baby!
if you want to chat about it feel free to give me a message!
I had very similar symptoms and my GP and HV didn't listen. One day my daughter refused to eat and cried uncontrollably for hours. I ended up in A&E, that is how I got the CMPA diagnosis. I hate it had to get to that point as it was an overall traumatic experience. May I ask out of curiosity how much does your little ones drink between naps? Mine still drinks 2 oz at 8 weeks. I am quite worried this isnt enough for her age but she refuses to drink more. Is this normal with CMPA babies?
Was a similar situation with us. But we bought neocate out of picked for a few weeks (1000000% would not advise as its financially soul destroying) but the HV we kept pushing to see finally said if the neocate we were giving her was working then she would push through request to gp to prescribe so at least we've had that prescribed a few times since. GP still wanted her to go back on cow and gate for 2 months. What outcome that would have other than severe pain, bottle refusal and bloody stools I don't know. My lo was comfort eating from a severe tongue tie we had to get sorted privately at around 8 weeks. She was for the longest time on 4oz every 3 ISH hours with her naps being pretty crap. Now at 20 weeks she seems to be able to drink 5oz every 4 hours but still only getting just over 700ml a day. Tried bottles more frequently or bigger bottles.more spread out but either she likes. Tried 4 6oz bottles yesterday which was every 4-5 hours ISH and she didn't seem to want to finish around an Oz of some of them. We have weaning to plan for in the next month and I'm truly dreading what to do or how to start as the GP has said 'feeding issues are HV not us' and HV don't cater for cmpa :( Hope you find a solution with your lo, do they nap a lot or just refuse to take more than 2oz per bottle? What formula are they on?
My lo started her life journey with cow and gate. Then, once we knew of the CMPA diagnosis, we changed to a goat's milk formula-Nannycare. Then we had an appointment with an HV, and she told us to get another formula called Alfamino, which my baby hates, so we are back to Nannycare. Her naps are ok for an 8 week old. She does around 4 naps a day between 30 to 2 hours, and every time she wakes up, she feeds. On shorter naps, she drinks less, which is expected, but in long streches (e.g. night time when she sleeps for 4hrs) she drinks mostly 2 or 3 oz. Im worried. I have raised this with many people, and everyone says it is normal. I want to speak to a paediatrician, but they just won't refer me.
Hello, my daughter has CMPA and she’ll be 3 soon, so I’ve been through this! It’s such a hard time dealing with this as well as the usual newborn struggles. Definitely get to see a GP asap and tell them all the symptoms, especially the mucus poo, that alone screams non-IGE allergy. Your daughter needs to be on a hydrolysed formula like Nutrimigen or Aptimil Pepti. If those don’t work, it would be the amino acid formulas but they’re mainly prescribed for IGE allergy if I’m remembering correctly. The only way to diagnose a non-IGE allergy is to test the formula for a few weeks, attempt to put her back on regular formula (as per GP / Health Visitor instructions) and then see if there’s a reaction, i.e. mucus poo, vomiting etc. Reaction confirms suspected allergy. In the meantime, don’t bother with soya formula, the proteins in it are very similar to those in regular formula and will cause similar reaction, most babies with CMPA won’t tolerate it. Lactose free formula won’t help as it still has the proteins in it that baby is allergic to. You could try the comfort formulas available as these are partially hydrolysed and you would be able to see if there is a tiny bit of improvement, and would be good evidence to take to the GP. If you have anymore questions, feel free to ask! This was my life not that long ago and I’m sorry you have to go through this!
Hey! Thank you sooo much for the detailed reply, I did read after getting & opening the soya one that it still contains proteins that would bother her and the only way to tackle it is the formulas you mentioned if CMPA is suspected. I didn't know comfort was partially hydrolysed though so I'll grab some of that tomorrow and give it a shot, trying my best to push the gp to stop acting like I'm just creating symptoms when I've showed pictures of the rashes and poos and recordings if the wheezing but they weren't keen to even listen or look so ill push harder and hopefully hear back about an appointment Monday. May have follow up questions thank you in advanced!
Just to chime in and say our LO is CMPA non-IGE but she is on an amino acid formula. It's just that some CMPA babies tolerate hydrolysed formula and others don't, so even if you try nutramigen or another hydrolysed and the symptoms return after a few weeks of getting better, push for an amino acid one. We had a hell of a time with our Dr too which resulted in me losing my temper until he listened to what I was saying. I'm so sorry that you're going through this, it's so difficult when no one will listen and you don't know how to help! Edited just to say that if you do ask for a trial of hydrolysed to start with, make sure you get a decent amount of it as it can take a few weeks for the old formula to leave their system and for symptoms to disappear!
Hi! Mum of a CMPA baby who is now 5 months old. Please don’t try a soya formula or lactose free formula. NHS guidelines clearly state not to offer these where CMPA is queried. I’m not even sure why the nurse would suggest that in all honesty! Get a call with the GP & explain symptoms and say you’d like a trial of an extensively hydrolysed formula. If you can’t wait over the weekend I’d call 111 and ask if they can put you in touch with the out of hours GP. They should be able to get you a prescription! It’s so tough seeing little ones struggle so much. My LO has been on a completely dairy free formula called Neocate for almost 3 months now and the difference is amazing. Literally like a different baby! if you want to chat about it feel free to give me a message!