CMPA // Cow's Milk Protein Allergy and Reflux // Our story

My second baby was diagnosed with probable Non-IgE CMPA in June 2020 at 6 weeks old, which was confirmed following a "challenge" 6 weeks later. She's also allergic to soya.
As a part of her CMPA, she suffered from severe reflux (GORD). This was managed successfully with Omeprazole, seeing almost instant improvement in symptoms and continued improvement as the weeks went on, and as cow's milk protein was removed from her diet.
I exclusively pumped breast milk for my daughter, while trying to introduce a prescription formula. She reacted to the first prescription formula, an extensively hydrolysed formula called Nutramigen, but settled with an amino acid formula called Neocate.
This video is a brief explanation of what happened. Obviously I've left out huge chunks of our story because I didn't want to make a video a month long.
We also saw a chiropractor and an osteopath who specialise in treatment of babies. She had a posterior tongue tie snipped, and we had a lot of support from our doula and an IBCLC.
Please feel free to ask questions below and I'll do my best to answer them or direct you to appropriate sources of information.
Laura x

Пікірлер: 66

  • @harjotkaur6352
    @harjotkaur6352 Жыл бұрын

    Please don’t ever take this video off Laura. So many of us can relate to it. I truly hope you and your family are doing well.

  • @harjotkaur6352
    @harjotkaur63522 жыл бұрын

    Thanks for sharing this. I am currently going through this with my 4month old daughter. Still so many questions unanswered. But listening to you makes me feel that I am not the only one going mad. People have been rather unkind and put it down to simply a new mother not coping well. Shame on these kind of people as they make our life much worse by adding extra stress.

  • @lauraelaine8080

    @lauraelaine8080

    Жыл бұрын

    I apologise for the late reply. I didn't realise this was here. I hope you guys are in a better place. Have hope, because it does get easier. Sending love x

  • @woolydearest
    @woolydearest3 жыл бұрын

    A heart felt video Laura 💕 Iittle Imogen is lucky to have you as her Mammy xxx

  • @lauraelaine8080

    @lauraelaine8080

    3 жыл бұрын

    thank you xxx

  • @nalacutie
    @nalacutie2 жыл бұрын

    I'm mortified and wish I discovered this video 9 months ago. My story is just like yours. I am a nurse and also didn't want to over medicalise my baby but knew it wasn't normal. There were times he would be awake for 12 hours straight, screaming. I would try everything to get him to sleep, to the point where I have had a disk prolapse from bouncing/carrying etc. I knew he was in pain but I thought it was the IV antis from meningitis treatment that affected his gut (you could feel/hear the hyperactive sounds++++). I swear he was normal when he was born then dramatically declined once we introduced formula to help jaundice. People kept saying "he just wants to be on you" no, he wouldn't settle on me "put him down drowsy but awake". I had 3 colleagues have babies at the same time as me and they'd be at the mum's yoga and I'd be getting zero to 45 mins sleep a night for months. This is a really long comment, I clearly still need counselling from the trauma of it. My baby is now 9mo and we have been on a rice milk formula and I've cut dairy/egg/soy 10 days and he's sleeping 6 hours in a row. He MUST have CMPA. I am dreading the challenge. Anyway, THANK YOU.

  • @lauraelaine8080

    @lauraelaine8080

    Жыл бұрын

    Hi there, I'm really sorry to read what you've been through. It's truly awful. My daughter got up the milk ladder on 3rd attempt. It gets better. She's a happy (and extremely sassy) little person now. Sending love. x

  • @barbietim2462

    @barbietim2462

    Жыл бұрын

    Hi where did you purchase your rice milk formula? I am UK based. Thanks

  • @diamondpaintingcrafts5807
    @diamondpaintingcrafts58073 жыл бұрын

    Omg this brings back so many memories... Kind of blocked out most of it. She honestly cried ALL the time. I remember you used to sit up straight all night to make her sleep she was too young for you to sleep sitting up in case something happened. She was sooooooo strong, but it was because she was in pain. This is an amazing video for other parents. Well done Laura, this must have been so hard but kind of therapeutic to do as well. I just wished the Dr would have listened to you more then Imogen would have been so much happier.. By the way I can hear Isla 😂😂I had no idea you were making a video or we would have been quiet

  • @lauraelaine8080

    @lauraelaine8080

    3 жыл бұрын

    thank you x shudder

  • @rachellenihan7529
    @rachellenihan75293 жыл бұрын

    Thanks for sharing your journey Laura, such a difficult time you’ve had. Our journey has been very similar! FTM here and I thought I was losing my mind at times

  • @sosickofstudy

    @sosickofstudy

    3 жыл бұрын

    Big hugs. You have to live it to get that it's not just some fussies, or a bad few hours. Really hope you're out the other side xxx

  • @meeradbest
    @meeradbest3 жыл бұрын

    Aawww it's so sweet that you poured your heart out Laura 🥰 you are a wonderful mother and an epitome of patience. Imogen has gone through so much since her birth and you have been there for her.. 🤗

  • @sosickofstudy

    @sosickofstudy

    3 жыл бұрын

    Thank you Meera xx I suppose as parents we have no choice but to get on with it. Thankfully she's out the other side, more or less. Need to start the ladders but hopefully it goes OK x

  • @lauraelaine8080

    @lauraelaine8080

    3 жыл бұрын

    thanks :)

  • @saphire9823
    @saphire9823 Жыл бұрын

    Thank you for this. It's so great to hear validated. No one understand and I feel like they have unicorn babies. I wasn't educated about this and didn't know what was going on trying to sort it out myself now! It's so awful seeing your little one to through this

  • @lauraelaine8080

    @lauraelaine8080

    11 ай бұрын

    That's how I felt too. I had no idea that babies could be this unhappy. She's a very happy 3 year old now. Up all the ladders and is doing great. Have a lot of hope that things improve xx

  • @kellyb6063
    @kellyb60632 жыл бұрын

    Thanks for sharing! I’m a new nurse practitioner and new mom as well. My son has suspected CMPS so I am starting the elimination process. I related so well to your video. I can get anxious since I have a medical background, but hearing your story has helped me. Thanks again!

  • @lauraelaine8080

    @lauraelaine8080

    Жыл бұрын

    I'm so glad to hear I helped. Sometimes I wonder if anyone would care for this video. You're not alone. There's so many of us out there. It gets better xx

  • @vanessaocampo7265
    @vanessaocampo7265 Жыл бұрын

    Thank you for your video, my baby and I are currently going through this. She was premature and in the NICU for 2 weeks. The incredible frustration that I had for weeks because I could tell she was in constant pain and constantly 'leaking' from her bum, but no one seemed to listen to me. Not the nurses, or the first doctors, even my family. Every one kept telling me babies cry and get colic and use a lot of diapers, its normal and that I was a first time mom, i just didn't know. It got to the point were I was sobing along with my baby all night because I felt I was poisoning her with each bottle I fed her. She even developed little open sores on her bum from her diarrhea, even thoughI was constantly changing her. I searched around for another doctor and once I went in for the appointment he also asked me a lot of questions and looked at my baby thoroughly, which wasn't really done before. The new Dr. Said it was CMPA, and after working to get rid of all dairy in my diet and having my baby switch to the amino acid formula, she is doing so much better. Still not completely pain free yet but a huge change. She now has monents of calm in the day were she can actually be herself and her bum has healed. Anyway, thank you for sharing, it makes the moms out there that are going through this feel better to know other babies have gone through this path but it is something that can be managed.

  • @simplytitanium7919

    @simplytitanium7919

    Жыл бұрын

    how soon after changing formula did you see improvement? currently going thru this with my premie. he was just hospitalized for 2 weeks because of this issue. feeding tube talks have been given to us if he doesn’t improve soon. he’s been on the nee formula for a week

  • @lauraelaine8080

    @lauraelaine8080

    Жыл бұрын

    I'm so sorry you went through this. It's heartbreaking when you think you're hurting your baby and don't feel listened to. Makes you questions yourself and wonder if you're imagining the whole thing. I was lucky that I was a second time Mammy, as I think people respected what I was saying that little bit more!

  • @Payel853
    @Payel8533 жыл бұрын

    Thank you so much for making this. Currently going through the same experience with our son and watching this at 1 am while pumping is oddly the best thing that happened today! I’m planning to send parts of this to friends and family who still have difficulty understanding what this experience has been like for us. Liked and subscribed 👍

  • @lauraelaine8080

    @lauraelaine8080

    3 жыл бұрын

    I'm so sorry you're going through this. Such a horribly tough experience, and so so glad it helped you in even a small way :) It gets better! My baby is so happy now! I can hear her laughing in the hall as I write this x

  • @Payel853

    @Payel853

    3 жыл бұрын

    @@lauraelaine8080 thank you so much! I felt supported through your video so please keep making these videos which gives me hope for my little one.

  • @harjotkaur6352

    @harjotkaur6352

    Жыл бұрын

    I had to use the same video to explain the hell I went through with my daughter. It’s still difficult. Hope things are better for you guys.

  • @mariaferreiralimaatelier4695
    @mariaferreiralimaatelier4695 Жыл бұрын

    Laura, I m going throught the same thing. I don´t think that my baby is as bad as you describe your story but it´s rough. It´s really rough and it has been rough for us but it´s good to know that we are not alone. Thank you for sharing !

  • @lauraelaine8080

    @lauraelaine8080

    11 ай бұрын

    just saw this now, hope things are improving for you guys xxx

  • @justynabartoszko2686
    @justynabartoszko2686 Жыл бұрын

    Thank you for posting. This was very helpful.

  • @victoriahanzel7379
    @victoriahanzel7379 Жыл бұрын

    Thank you so much for sharing your story. Our LO got diagnosed at 6 weeks after researching online. We are on day 5 of Nutramigen and hoping it works within the next week. But your story gives me hope and makes me feel seen

  • @lauraelaine8080

    @lauraelaine8080

    Жыл бұрын

    I'm so so glad to read this. I'm glad you're getting your baby sorted :) My girl is doing great. She got up the milk ladder on 3rd attempt. She has no allergies and no food restrictions, and she's a happy and healthy 2 year old who eats everything. Hang in there, it'll get easier with time. And when people acknowledge that you're not making this up!!! x

  • @Zackadoo

    @Zackadoo

    2 ай бұрын

    Did it work? I’m crying all my tears off

  • @jessmackay12
    @jessmackay122 жыл бұрын

    Thank you so much for this video, really from the bottom of my heart. My husband works abroad and is gone for long periods of time and we are new to the area we live so have no real support system. Its been so isolating. And heart breaking. This is my first child and I feel like such a failure. My baby is 12 weeks. But was born 7 weeks premature with a 2week stay in the neonatal unit. We are just on the stage of trying aptimil pepti 1 after bleeding from bottom. Hoping to see an improvement in 2 weeks.

  • @lauraelaine8080

    @lauraelaine8080

    Жыл бұрын

    I'm so sorry for the late reply. I hadn't realised anyone had replied! It's very isolating. I'm sorry. YOU ARE NOT A FAILURE> you have a sick baby! That's all. It gets better. My daughter has gotten up the milk ladder and she's much happier. It won't always be this hard. Hang in there! x

  • @daisyhantolo3940
    @daisyhantolo39402 ай бұрын

    Such a similar story: baby was in the nicu and treated for sepsis. I have been thinking her gut flora was wiped out. Thank you for your story

  • @jamilleoglesby6739
    @jamilleoglesby6739 Жыл бұрын

    My 5 week old got diagnosed. It’s been 5 weeks of hell and we’ve all cried lots of tears. We’ve tried several things and are currently on Puramino which at his current feeds cost us over $500 per mo. So tired of friends and family saying they know and understand. They tell me to try this or that formula (all regular ones) or take walks. My kid has legit medical allergies, idiots. Yes babies cry and fuss but not 24/7 screaming. He has every symptom in the book and I had to fight and keep telling the doctors non of this is normal until they took notice. No end in sight yet, praying for a miracle, not sure how much longer we can do this.

  • @lauraelaine8080

    @lauraelaine8080

    11 ай бұрын

    Oh goodness this reply takes me right back. It's so hard. And made worse when other people invalidate, saying they understand when they definitely don't. I'm sorry this is your reality right now. I hope things have improved in the last 5 months. I hope you're getting support as it's so critical for the care givers. My kids is healthy and happy now. Things change. Hang in there xx

  • @jamilleoglesby6739

    @jamilleoglesby6739

    11 ай бұрын

    @@lauraelaine8080 Hi Laura! My sweetpea is 6.5mo now. Is doing pretty well. Still on Puramino formula, was on Nexium and generic gas drops for 3mo, and still weaning. Started solids but very basic fruit and veg. No dairy, soy, corn, etc. Still working with an allergist, GI, and the Pediatrician team to see what else he’s allergic to. The alarming news is- they are now seeing newborns “on the rise” with these conditions. My husband is convinced it’s our food and then passed down genetically to our kiddos. I’ve met a couple of Moms at random parties- they say I’m the 5th, 6th, 7th they’ve met!! This is a real thing now happening to our babies and it’s scary! Nice to not feel so alone now, but so scared that it’s now becoming more and more prevalent in newborns in the US, and possibly other countries.

  • @cralston800
    @cralston8003 ай бұрын

    Exactly it’s rough going through this now and just got answers he’s got the allergy

  • @MaqsudaChowdhury-jl3bw
    @MaqsudaChowdhury-jl3bw5 ай бұрын

    Sounds like you telling my story. I was all alone

  • @Lexleo44
    @Lexleo445 ай бұрын

    My son is the exact same way right now, had to do the research and diagnose him myself. He definitely got better after I gave up dairy, soy, & eggs, then all of a sudden at 3 months his reflux really kicked up. Currently trying to figure that out and it is very tough 😔 I also wanted a big family but this is our first and it’s been rough so probably one and done for us.

  • @laurapenman5429
    @laurapenman5429 Жыл бұрын

    I was really relieved to find your video as other than my partner, friends dont seem to understand how hard even reflux is. My baby is now 14 weeks, bur from 4 days old started bringing up everything they had eaten, i was breast feeding, we had two back to back hospitalisations, which was hard for my 3 year old. My baby wouldnt feed off me. Eventually they did again once we started on gaviscon but after two weeks we couldnt get them to keep gavisçon down and they were screaming all the time. At that point we started on omeprazole and after two weeks we saw a massive difference. However we arent sure if they have cmpa, but a food diary showed when I have more dairy the reflux and colic symptoms flare up. So i have reduced my dairy intake. There is no blood in the poo, but its mucusy and often watery and wind really hurts him. No rash either other than from the sickness, which barrier creams have helped with. This has lead me to think its not cmpa bur dairy makes the reflux worse...or is the fact dairy makes it worse does it mean its cmpa? So confused!

  • @lauraelaine8080

    @lauraelaine8080

    11 ай бұрын

    Sorry, just saw this. I'm terrible for remembering to check! So breast fed babies seem to usually get a less obvious form of non IgE CMPA. Our paediatrician said at the time, that if I'd been feeding her formula, she'd have been much much worse. So in a way, breast milk protected her as she was only getting traces (I think that's the word I mean) of cow's milk protein rather than a huge torrent of it with formula. It can be hard not to read into everything, and wonder if eating X or Y made it worse. Finding a good paediatrician with an interest in this was helpful, as was the dietican we saw. I decided at some point I didn't even care if it wasn't CMPA, I was too afraid to take the dairy anymore just in case. Sorry this is so long. You're not alone, read the comments here, many of us have been through the same thing, and usually people don't get it unless they're in the house and see first hand xxx (my daughter is 3 now and no allergies or reflux anymore, and she's healthy and happy! have hope that things improve x)

  • @lauraelaine8080

    @lauraelaine8080

    11 ай бұрын

    also he said she had a more severe CMPA because she was affected even with breast milk. Maybe your baby is the same. But try to find good help from professionals so they can tease it out with you.

  • @laurapenman5429

    @laurapenman5429

    11 ай бұрын

    Thank you so much for your reply. Really appreciate you taking the time. Great to hear your daughter is 3 now and is free of reflux and the dairy allergy! I am now dairy free, have been for just over two weeks as my son has now dropped to the 0.4th percentile and the sickness just wasn't easing, even with the reduced dairy. Have only started seeing a difference in the past two days. Back to paediatrics next week due to the constant decrease in weight gain. Hoping they can be supportive and help us with next steps.

  • @shalinis3874
    @shalinis38742 жыл бұрын

    I feel you. My son had extreme reflux and still is allergic to formula or cows milk. He is 10 months old now. He had such bad colic and reflux

  • @lauraelaine8080

    @lauraelaine8080

    Жыл бұрын

    Sending love. My daughter got up the milk ladder on 3rd attempt! She was 2 years old. Hang in there x

  • @Mssinginggirl95
    @Mssinginggirl952 ай бұрын

    Going through it with my baby right now he’s 5 months now and although he’s better he’s not perfect still avoid the car seat we stay home and just waiting until he outgrows it … can you share the private doctors info ??

  • @stephaniej2235
    @stephaniej223513 күн бұрын

    My 7 week old has CMPA and its awful. We have started a dairy free plan so long term im happy with what we are doing. I wanted to know, her pain sometimes seems so severe, at what point do we take her to A & E if her pain levels appear to be off the charts? There must be something someone can do to help 😢 I dont want to sound extra but it is so alarming sometimes!

  • @bettinaantal6083
    @bettinaantal60832 жыл бұрын

    Hi! How long did it take for the neocate to « kick in »? My twins have the same symptoms and started neocate a week ago and I don’t see an improvement yet

  • @harjotkaur6352

    @harjotkaur6352

    Жыл бұрын

    It can take upto 3 -4 weeks for any improvement

  • @lauraelaine8080

    @lauraelaine8080

    11 ай бұрын

    Sorry, just seeing this now. TBH I can't remember the details anymore so I'd hate to tell you wrong. But there was a small improvement initially, with a bigger leap in improvement taking a few weeks.

  • @julieswann8128
    @julieswann81287 ай бұрын

    I have just discovered this and have an 11 week old. We have been on gaviscon and omeprazole and things are worse than ever.

  • @lauraelaine8080

    @lauraelaine8080

    6 ай бұрын

    did you discuss milk protein allergy with the doctor? (also i'm sorry to hear, it's such a tough place to be in xx)

  • @julieswann8128

    @julieswann8128

    6 ай бұрын

    @@lauraelaine8080 yes, they don't believe it is cmpa as he has no rash or eczema or blood in his stool 😞

  • @mayazoghbi1193
    @mayazoghbi1193 Жыл бұрын

    All you said are the same symptoms for my one month baby , she will stay unhappy?

  • @lauraelaine8080

    @lauraelaine8080

    11 ай бұрын

    Hey there. I'm also sorry for not replying sooner, I just saw this. I'm terrible for remembering to check. My advice is to get a good GP or paediatrician who care about this stuff, and a dietician if you are changing your diet (breastfeeding), or when you're starting the baby on solids. My daughter is 3 now and she is very very happy. She's healthy and fun and happy. She got up all the ladders and has no allergies. Keep hopeful. xxx

  • @UNKNOWNUSER-ix5qs
    @UNKNOWNUSER-ix5qs Жыл бұрын

    My baby is on amino acid formula currently 6mo takes only 2-3 ounces at a time😔😔 this is so less for a 6 mo baby

  • @lauraelaine8080

    @lauraelaine8080

    Жыл бұрын

    I don't remember if i said this in the video, by my girl would only drink 3oz at a time, max!! people would act surprised, and some of the older generation would say they'd get her to take more. But nope. she'd stop at 3oz/100ml. I was initially pumping milk for her so I hated the waste left in the end of the bottle. it gets better! almost everyone i've ever met with a cmpa child agrees x

  • @jenniferleonardhair

    @jenniferleonardhair

    4 ай бұрын

    This is my baby too! She’s 3 months Just started her on hypoallergenic formula and reflux meds. Does this take a while to work? Or does it not really go away?

  • @lauraelaine8080
    @lauraelaine80803 жыл бұрын

    links to more info and sources: purplecrying.info/sub-pages/crying/why-does-my-baby-cry-so-much.php www.researchgate.net/figure/Different-presentations-of-cows-milk-allergy-in-infancy_fig5_247771645 www2.hse.ie/conditions/child-health/reflux-in-babies.html www.neocate.com/syneo/

  • @Ss-un8ho
    @Ss-un8ho3 ай бұрын

    The sound is v bad on this video

  • @haloSrising
    @haloSrising2 жыл бұрын

    Really wanted to listen to your story but I couldn’t follow.. our pediatrician said the same thing oh it’s just her personality blah blah blah so we switched.

  • @ruchigupta9948

    @ruchigupta9948

    Жыл бұрын

    Hey did it completely resolve for your baby.. or she still have symptoms

  • @lauraelaine8080

    @lauraelaine8080

    Жыл бұрын

    @@ruchigupta9948 My baby is now 2.5 years old and got up the milk ladder on 3rd attempt. The first 2 attempts, she reacted. But third attempt (many months later) she didn't react at all. She can now eat everything. She had non IgE CMPA.

  • @saphire9823

    @saphire9823

    Жыл бұрын

    ​@@lauraelaine8080 Laura what is the milk ladder please?

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