Both the ankle biters have milk allergies. Archie is lactose intolerant and had mostly outgrown this at 15 months old.  The only thing he can’t have now is an actual glass of milk but can eat all foods containing milk and lactose which is amazing. Frankie is lactose intolerant and has cows milk protein allergy. She has not yet grown out of her allergies.  

Having a child with allergies is one of most heart breaking things I’ve ever had to deal with.

Doctors do not like to diagnose milk allergies and palm you off with their favorite phrase “it’s colic they will be fine by the time they reach 4 months old”

So you wait and count down every day until your baby is 4 months old , wishing the time away when you should be enjoying and embracing every second. I remember Archie hitting 4 months old and me naively thinking oh thank god my baby is going to be ok now.  This didn’t happen he was not “ok”

You see them screaming in pain every day and night and it’s always worse between 5-8pm as they now have horrendous colic caused by the lactose build up  all on top of the crippling pain of the allergy. You keep pumping them with something they are so allergic to they are miserable 80% of the time and so are you. Archie would just cry for the majority of the day and night , he wouldn’t sleep or feed properly , he used to projectile vomit and choke after nearly every feed.

I felt like such a failure for not being able to make my baby happy. For not knowing what was wrong with him. I started to blame myself and think I was the worst mother in the world and that everyone could see it and was judging me.

You go to the doctors for the 10th time and tell them you strongly believe your child is lactose intolerant as there is also a family history of it , you describe their symptoms again for the umpteenth time. Then the doctor finally listens to you and agrees to trial a lacto free milk or do they just do it to shut you up.

I used to dread feeding time with both babies as I knew what was coming. I felt like an awful mum for not enjoying feeding my babies. My tummy would flip and I would get so anxious and upset when they wouldn’t feed.

The joy and happiness when within 48 hours your baby is a completely different baby. He’s smiling more, engaging in play , enjoying his milk and being able to go to toilet without screaming in pain , they sleep contently. That minute you know mothers always know best it’s the most amazing feeling.

 

 

Archie content and sleeping 

Then we had Frankie I felt prepared and ready if she was to have an allergy. I was clued up this time and doctors would listen to me having had one baby with this. How wrong was I? How naive was I ? Very !! 

By the time Frankie was 3 weeks old I knew too that she had an allergy the same as Archie. Off to the doctors I went , I was firm and dismissive of their colic theory. They agreed to prescribe some lacto free milk. I waited for that magic 48 hour mark to have a happy baby that didn’t cry and writhe in pain. That didn’t happen. So back to the doctors and we were given a different milk. Again this didn’t work if anything it made her worse.

She cried and cried , she drank the milk it went straight through her before she even got to finish the bottle. She began breaking out in eczema all over her head and back of the legs and arms which was so severe it was oozing puss. Another trip to the doctors and I had done some research on different milks and come to the conclusion Frankie needed an amino acid based milk with no cows milk proteins or lactose.

Poor Frankie with her eczema 

 

 

So I asked the doctor to prescribe this and was told we couldn’t have this as it as £30 a tin and that the eczema was cradle cap ! I pleaded with the doctor to let me try the milk but she refused and sent me away in tears. 

That Afternoon was the worst I’ve ever had during my whole time as a mum. Frankie screamed and screamed ,  she was bright red all over and the eczema was getting worse every time I tried to feed her she would choke and scream even more. Archie also screamed as this little person we brought home from the hospital cried all day and in his eyes made mummy sad and cry.

I couldn’t take anymore I rang my health visitor in floods of tears she was standing at my door within 10 minutes. Within 20 she had got us admitted to the hospital on the paediatric ward. I will never forget this wonderful lady. She was amazing. 

We saw the doctor who confirmed she did have eczema which in fact was severely infected and that she needed an amino based acid milk. She was given antibiotics , steroid creams and ointments for the eczema and prescribed a new milk. 

Within 24 hours we had a happy and settled baby who didn’t cry all day and night. It was amazing , I cried tears of joy the first time she was able to drink a bottle to the end with no choking or it going straight through her. 

 

Her 1st real smile , took a while but worth the wait 

It’s still hard at times with Frankie not being able to have dairy.My heart sinks and I feel for her at parties when everyone is eating chocolate or certain biscuits she can’t have as she’s still so young she doesn’t understand why she can’t have the same as her brother . I have amazing friends who always ensure she is never left out at parties and is given an alternative. The free from ranges in the supermarkets are just amazing too. She was able to have chocolate coins and a selection box in her stocking just like her big brother and she was delighted with this. 

 

Frankie now at 21 months 

To anyone reading this mothers instinct is always right , always put up a fight and don’t back down. Don’t suffer in silence.

29 thoughts on “The heart ache of having a baby with milk allergies ”

  1. I have to agree mothers instinct is very rarely wrong and i’m glad you stuck to your guns and persisted so many people just listen to the doctors and dont realise anything is wrong and struggle on, i’m lucky in the fact none of my children have ever suffered with milk allergies but i’m glad you now have happy babies x

      1. I know exactly what you went through with your little girl.
        My little boy who is currently 19 weeks old has a milk protein allergy and on the nutramigen formula which doctors hate prescribing due to the expense. But like you I too have a fantastic health visitor who stood her ground for me and had my little boy sorted by 2 weeks old.
        Those first 2 weeks of his life were the hardest and longest 2 weeks I’ve ever experienced.
        I’ve also got a 3 year old daughter so I knew what my little boy was going through wasn’t normal.
        Watching him scream in pain as soon as he would start to drink his bottle, have an explosive nappy and projectile sick before he’d even finished it. For him to the continue to scream in pain for 2 and a half hours only for half an later it to all start again at his next feed. His stomach swelled so much it looked like it was going to burst.
        I was running on empty and I think me and my little boy just cried together until I got to breaking point and couldn’t take anymore.
        The doctors tried prescribing him with gaviscon saying it was reflux!
        A day later I didn’t bother trying the doctors again I just went straight to my HV and she had my little boy sorted by the end of that day. 24 hours later I had a completely different baby who was content and could actually sleep.
        Our next step coming up is weaning and checking all the ingredients very carefully! Xx

        1. So sorry you had to go through this too hun !! Cannot believe they wont prescribe or moan because of price !! It’s despicable !! So glad your HV helped you and you got the right milk so quickly that’s fab !! I know I was the same hun all I did was cry and with my 2nd it was worse when she was born my 1st was 14 months old and he used to cry too was heartbreaking !! I don’t know how I didn’t end up with PND !! yes we had the same them trying to prescribe gaviscon and also ranitidine which made it worse as that has sorbital in it which contains lactose !! If you want any help advice with weaning just shout as ive been through it with both – organix products are fab as most are dairy free 🙂 I have a fb page http://www.facebook.com/anklebitersadventures if you want to pop along and follow always there to chat 🙂 thanks so much for reading xxxx

  2. Really interesting post. I had a lactose intolerance until I was around 8 or 9. I remember always feeling left out when my parents had to bring alpro yoghurts or get me chocolate bars from Holland & Barratt to take along to birthday parties and the like – not to mention never being allowed cake. So much has changed since then it’s great that there are so many more options now 🙂 Alex

  3. What a fab post. Must have been so hard for you at the beginning. My daughter was lactose intolerant up until about 6 months so can slightly relate. The doctors kept telling me it was ‘newborn acne’ and the diarrohea was ‘normal’. I knew something was wrong and in the end my lovely health visitor helped me and referred me to another doctor who straight away agrees and prescribed me the LF milk xx

  4. What a lovely post. I sobbed as I read it as my daughter was also born with cmpa and suffered with severe eczema over every part of her body. As she was breastfed it wasn’t so apparent through her feeding. But the cmp in my milk was obviously just enough to cause the severe eczema which also used to weep puss and get infected. We tried every cream and steroid going and I used to cream her head to toe 8-10 times a day. It used to break my heart when children would ask what was wrong with that baby. It wasn’t until I weaned her at 6 months and made some baby rice up with formula that it became obvious. She came out in hives after the first teaspoon and her face and lips swelled up. It was terrifying. From then we got a diagnosis very quickly and also some amino Acid based milk so I could use that as a top up and cut dairy out of my diet. Within weeks her skin was better and now at 4 years old it’s completely clear. I used to sob at night when she was a baby thinking of my little girl in the future getting teased about her skin or being embarrassed about it. I totally understand the difficulties, especially around parties etc but like you I have a fantastic group of friends who also make sure she is catered for. School later this year, so I have some concerns about that but she is incredibly sensible and always checks that something is dairy free. The supermarkets are much better now and she can still have the odd treat. Good luck with your journey. Here’s hoping they will grow out of it one day. Motherhood is definitely an incredible rollercoaster of emotions!

    1. Aww hun so sorry to hear that you went through this 🙁 truly heartbreaking 🙁 how scary that must have been for you all 🙁 so glad shes much better now , that’s so good that she checks and looks out for dairy bless her !! Defo hope they grow out of it !! Massive rollercoaster , thanks for reading big hugs xx

  5. I’m so sorry no-one believed you to start with. We had a similar journey with our son. Long story but he was miserable and we kept getting conflicting advice on whether he had CMPA. Finally got a diagnosis at five months. He outgrew the allergy by 18 months. I’m expecting our second in two months and there is literally no advice/support for second time around!

  6. I agree we know as a mother when something is wrong. My kid was sick since he was 2 months. Since then I was telling the drs it was the milk but because he didn’t show the “commons” allergies symptoms they will keep saying was not the milk. We went from colic to GERD diagnosis, MRI, Endoscopy, Meds, until when he was 6 months and weight only 14lbs (the same weight at 3 months) due to frequent vomiting. That was then, they finally listen to me and agree to see an allergist but with the condition that he couldn’t find the cause my dr will admit my child to the hospital for tube feeding. Thank God the allergist since our first meeting he listen to me and ask me his history since birth. My kid was diagnose with FPIES (Food protein enterocolitis syndrome) to milk and soy. Since then he is a healthy kid.

  7. BabyLD came out in hives at his first taste of formula at 4 months old. we knew he was alergic to something in it but not what! The doctors confirmed this and referred us to the allergy clinic for tests, but since he put that I was breast feeding it was not put through as urgent and our appointment came through for 6 months later! I am alergic to fish so we assumed it was the fish oil in the milk as this was the only thing he hasn’t had through my breast milk. I was breast feeding but my supply had dropped so that he was loosing weight and feeding every hour and screaming for more! Like you I was not happy with the doctor so I went back again asking specifically for a different doctor, and suddenly the allergy clinic found an appointment the next week and he was diagnosed with cows milk protein allergy! We have just started the weening process dairy free and have a happy baby! Imagine if we were still waiting for an appointment though! Weaning would have been a mine field of hives and possibly annaflaxic due to an unknown allergy to dairy!

  8. Brilliant to share this. People have no idea what it’s like. I often see people with the ‘perfect’ babies and am so jealous. I know it’s terrible but I didn’t enjoy my babies and feel robbed of that time because of allergies. Well done for standing your ground. I couldn’t agree with you more. x

    1. Same hun I was always so jealous of perfect babies and still am 🙁 I still haven’t recovered from those early days – this is also why I could not have any more babies as I really could not put myself or another baby through that xxxx

  9. Wow how awful your GP waved you off and exacerbated your baby’s symptoms in doing so 🙁 So glad you got the support you needed through your HV. My baby has CMPA too. He’s 10 months old and still breastfed. Thankfully for me I had 2 friends who had been through similar and due to his birth my baby was already under a pediatrician so we got a dietician referral really quickly. It’s not easy is it xx

  10. My daughter had a milk protein allergy and we didn’t realise to start with we put it down to colic but we started to suspect when she seemed to have a really bad tummy permanently & the Dr’s were really dismissive tried to palm Me off with Gaviscon but we persevered & they gave us Wysoy but it took me ages to get her to take it as she loathed it!Thankfully she grew out of it by the age of 3 so we’re really lucky but I used to feel sorry for her not having chocolate or cake at parties too!

    1. Awww sorry to hear you also went through this – it’s so hard getting them to take the new milk isn’t it , they say their taste buds are not developed and they cant taste it early on but I don’t believe that as the faces mine made ! So happy she grew out of it !! I know the parties kill me to be honest xxxx

  11. It is amazing how dismissive health care workers are to moms concerns. I have a 10 year old who had a milk protein allergy and I am so thankful that our pediatrician was concerned enough to test her stool for blood. I cut dairy from my diet and did end up doing a full elimination diet for 2 weeks before she was completely comfortable. She went on to be diagnosed with celiac disease at 6 years old. Again we were so lucky to have a family doctor who heard our concerns and didn’t hesitate to have her tested. I breaks my heart to hear stories of babies and moms to watch and wait while their babies suffer.

  12. I’m lucky none of my children had milk allergies must be very tough instinct is always right though Thanks for linking to the #THAT FRIDAY LINKY come back next week please

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