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Please help

9 replies

Mummummummy1985 · 22/02/2023 03:42

My baby was born at 31 weeks, cows milk allergy, on Aptimal Pepti 2 now and omeprazole 12mg. She’s nearly 9 months old. My milk never came in so couldn’t breastfeed, assume from the stress of everything that happened hence the formula. She cries all the times, moans and whines. I’m at breaking point. No teeth yet but crying/moaning started from around 35 weeks and has never stopped. She cries when you put her down, cries when wakes up. Sleep was good but now wakes intermittently through the night. Can’t get a routine. Awaiting to see ENT because of nasal airway issue, she appears to struggle to breath through her nose (oxygen levels fine). Tried every thing for help relive colic. Pain medication doesn’t appear to help. She can get aggressive when frustrated, like wrenching her body. I’ve tried so many things and nothing works. No help out there from healthcare, comments like “babies cry” even though her distress is through the roof every day. I’ve stopped going out because of how she is. Small windows of smiles and giggles. I’m worried the childminder won’t be able to manager her when I go back to work. Im feeling okay in myself, not depressed just sick of this constant crying etc. feel like know one wants to listen or understand the situation. I asked for paediatrician to investigate, take some bloods but he said “she looks fine, putting on weight and babies cry”. I said it’s not just the odd crying episode but still won’t investigate further. No help with prem babies out there. I’m just so lost. We all expect babies to cry, I’ve got a 9 year old so I’ve been through it before but my youngest is nearly 9 months and it’s been relentless, I’ve not enjoyed her at all which is such a shame because it’s took 5.5 years to get her. I’m just living day to day. Any advice would be appreciated.

OP posts:
Are your children’s vaccines up to date?
OracleMiracle · 22/02/2023 19:16

Hi, it sounds like you are going through a very tough time: I just want to say it will get better. I can’t say much with reference to the medical issues, but I had a very unsettled baby and I certainly remember how challenging and difficult it could be. The change for us came when she could walk around (she was walking at 9 months) and started communicating effectively. Then all her frustrations faded and she became a determined and independent little girl. It was also at this time her dad (finally) bonded with her and it started a whole new chapter in our lives. Hang on in there: maybe she is just uncomfortable and frustrated? She is probably also bouncing off your own anxieties which she is sensing from you: that was definitely the case for us. I hope things improve in the not-too-distant future.

PritiPatelsMaker · 23/02/2023 08:22

Is Pepti 2 a hydrolysed milk? If it is, I'd go back to the GP and ask fir an amino acid based milk.

Has the dose of the omeprazole been increased with her weight too?

9 months is prime time for a huge sleep regression and waking at 9 months is normal but screaming in pain isn't, you're right on that one.

I'd maybe ring Allergy UK and then book in with the GP and ask for an amino based milk and a referral to a Paediatric Dietician.

Mummummummy1985 · 23/02/2023 12:32

Thanks for the replies. Yes it is hydrolysed milk, could that be causing issues? To be honest we put her on Nanny Care milk (goats formula) for a period of time which seemed to really settle things now but when I went to hospital with her they said she should really be on a dairy free milk (they think she has a cows milk allergy but can’t be 100% certain). So I changed to this Aptimal pepti stuff and they also said they believed the screaming was reflux but no guarantees. She’s on the max dose of omeprazole for her weight. I’ve stopped it this morning tho because I honestly dont see any difference using it and I’m wondering the side effects could be adding to her behaviour. I just don’t know what to do anymore. I’ve also started her back on the nanny care milk this morning and no omeprazole and she’s been slightly better but who knows, everyday is so different. Just sick of health professionals saying it could be this or it could be that, there’s no nailed on evidence for the medication or milk she been put on. I think we had Neocate which is amino one but she had a lot diarrhoea on that one. She’s been on so many milks, I’m getting on with food so three meals a day but she still needs her milk in the morning and bedtime

OP posts:
PritiPatelsMaker · 23/02/2023 12:58

I think the thing that's most frustrating is there is no test for non-ige allergy so it's just a case of cutting it out.

If she's in 3 meals a day and her symptoms differ from day to day, have you tried keeping a food diary to see if she's having reactions to another food?

Mummummummy1985 · 23/02/2023 18:08

I’ve phoned allergy UK so thank you for that. They said about changing the milk so the protein blocks are smaller. They said we can pay private for testing but not many will agree to test at her age. You know, my gut says it’s nothing to do with an allergy but no one will listen to me and I just don’t know where to turn anymore. I’m broken.

OP posts:
PritiPatelsMaker · 23/02/2023 18:27

Ok so if your gut is saying it's not an allergy, has she been checked for Tongue Tie? I had a crier abs it turned out to be that Flowers

Mummummummy1985 · 23/02/2023 21:32

She’s been checked for that and no issue.

OP posts:
Sha76 · 26/02/2023 15:59

Hi ladies please help. So my daughter stayed with my mum and dad over night last night been really good not cried at all. When I went to my mums today to pick her up she was winging is it because she missed me or? She’s been abit ratty since ?

Ojtx · 02/09/2024 22:15

Mummummummy1985 · 22/02/2023 03:42

My baby was born at 31 weeks, cows milk allergy, on Aptimal Pepti 2 now and omeprazole 12mg. She’s nearly 9 months old. My milk never came in so couldn’t breastfeed, assume from the stress of everything that happened hence the formula. She cries all the times, moans and whines. I’m at breaking point. No teeth yet but crying/moaning started from around 35 weeks and has never stopped. She cries when you put her down, cries when wakes up. Sleep was good but now wakes intermittently through the night. Can’t get a routine. Awaiting to see ENT because of nasal airway issue, she appears to struggle to breath through her nose (oxygen levels fine). Tried every thing for help relive colic. Pain medication doesn’t appear to help. She can get aggressive when frustrated, like wrenching her body. I’ve tried so many things and nothing works. No help out there from healthcare, comments like “babies cry” even though her distress is through the roof every day. I’ve stopped going out because of how she is. Small windows of smiles and giggles. I’m worried the childminder won’t be able to manager her when I go back to work. Im feeling okay in myself, not depressed just sick of this constant crying etc. feel like know one wants to listen or understand the situation. I asked for paediatrician to investigate, take some bloods but he said “she looks fine, putting on weight and babies cry”. I said it’s not just the odd crying episode but still won’t investigate further. No help with prem babies out there. I’m just so lost. We all expect babies to cry, I’ve got a 9 year old so I’ve been through it before but my youngest is nearly 9 months and it’s been relentless, I’ve not enjoyed her at all which is such a shame because it’s took 5.5 years to get her. I’m just living day to day. Any advice would be appreciated.

Did you find out if it was cmpa after all? & was she any better on Nannycare? Thinking of trying it

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