Allergy Stories: Suzanne, whose daughter is Cow’s Milk Protein Allergic

 This week’s interview is with Suzanne whose daughter L is 2 years old and was diagnosed as cows milk protein allergic and lactose intolerant at six months but was visibly ill from 3 months. Suzanne tells us about their dairy free journey so far.. ​​

How did you first find out your daughter ha​d​ ​a cow’s milk protein allergy?

At around 3 months I noticed that she was having blood streaks in her nappy. People (including GPs) kept telling me it was normal for babies who ‘strained’, but something didn’t feel right. It happened sporadically over the next couple of months and I kept going back to the doctors until one offered to send off a faecal sample.  I think it was the phone full of pictures of soiled nappies I was making them look at that eventually wore them down!
The results came back as lactose intolerant and we were then referred to a paediatrician. The cow’s milk protein allergy diagnosis came from the paediatrician. 
As a first time mum, I didn’t understand the other symptoms to look out for. She was breastfed and there were times she would feed every hour and poo after almost every feed. She would wake every hour at night. Some nights she would writhe in pain. People always had theories as to what it was, and none of it was allergy related. I wish they gave you ‘signs to look for’ in new mum packs. After her first feeds you could hear her insides so loudly, I asked if it was normal, but doctors and midwives told me it was nothing to worry about. Experience tells me she’ll have problems if I can hear her ‘side’ grumbling as I did in that first day in the hospital. I still cringe at the thought that my first meal after the birth was a cheese sandwich with cheese crisps and the next, a bowl of cereal with fresh milk…

At what age was your ​daughter when the allergy was first diagnosed?

We got to see the paedetrician at 6 months, and he diagnosed her as cows milk protein allergic (‘probably all animal proteins’) and lactose intolerant.  

How did you find the process of getting your ​daughter a diagnosis?

Frustrating. I’m so glad I stuck to my gut instincts, though I still feel guilty that it took me so long to get it sorted as she would be in such pain. I didn’t know how quickly I could have stopped the pain, had I been more annoying, and that still sits with me. 

​Is your daughter in childcare? How did you find leaving her in someone else’s hands when she has a cow’s milk allergy. 

I am currently a stay at home mum. I got made redundant whilst on maternity leave, which turned out to be a godsend after she was diagnosed. That thing you read on every dairy free parents blog is true – people don’t get it unless they live it. They don’t take the same precautions and she suffers. Even my husband will forget to take precautions when he’s distracted because he’s not the one with her full-time. It’s just something that happens with human nature. I am definitely a helicopter parent.  I see people who know about her allergy switching to autopilot and giving her things she can’t have without a bad reaction, just the way they would with other kids without allergies, and so I’m the woman screaming ‘nooooooo’, as she leaps across a room. I am always nervous at parties where there are buffets, we’ve left parties in the past where food ends up everywhere, and we no longer do buffets when we throw our own parties. It just isn’t worth it. 
Although they too didn’t initially understand the extent of the precautions they’d need to take, my parents have been great in paying attention to what I say.  They check with me before they feed her something they’ve bought, or only give her food I’ve packed in the bag – so if I do leave her, it’s with them. My mum even researched how to make dairy free biscuits and buns because we haven’t been able to find shop bought biscuits she can tolerate (even when there’s no milk listed in the ingredients). My dad jokes he’s never washed his hands so much, because I’ve found if people don’t wash their hands after eating dairy products, she’ll still have some level of reaction. 
Knowing that even close family and friends regularly make mistakes, I am already nervous about her starting nursery in a year’s time and am hoping she might grow out of it, or it will be less severe, by then.  I’m following our local nursery on Facebook and it makes me nervous when they post pictures of group activities such as making pizza. 

Sometimes it can be quite difficult to diagnose and get support for allergies. Did you have good support from your doctor/allergist? 

Getting to a paediatrician was the nightmare, but once referred, he diagnosed us at the first meeting – from the previous GP test results and her symptoms. He was eager for us to go straight onto the special formula though, as he wasn’t convinced that my switching to a dairy free diet would work in order for me to keep breastfeeding (he didn’t believe there was science behind it…). He gave us two weeks for me to try a dairy free diet (and his number should we decide we wanted the prescription earlier), to settle my mind, but after just two days of me being dairy free she was almost a different baby. 
The paediatrician service did sign us off quite quickly after we were referred to a dietician and they felt we were managing. We weren’t too worried about this as the details in the letters sent to our GP would often need correcting, so we didn’t have complete faith in them. The dietician was entirely different. It was comforting to have someone who you felt confidently knew what they were talking about. It just took an age for that referral to come through, and starting a dairy free weaning process on your own can be interesting. I’m incredibly grateful for the Internet and Facebook groups! 
We saw the dietician every 3 months at first, but were recently switched to 6 months as they felt we were managing (and yes, I felt like I’d passed an exam).  
We’ve just moved out of the NHS trust area though, and consequently the dietician service has taken us off their books. We’ve been told we have to go to the new GP to be referred to a new paediatrician, to then be referred to a new dietician, which seems ridiculous. I’m not clear why one dietician service can’t refer to another. It just means at the moment we’re without support. 

What did you find most difficult about putting ​her​ on a free from diet? 

Eating out, plus the mistakes and the guilt. Learning that just because it doesn’t have dairy in the ingredients doesn’t mean you’re completely safe. She’s obviously sensitive to products made in the same factory, so trying something new is hit and miss. As a consequence, she’s no longer happy to try new foods (‘no try, no try’), but more than happily still eats df baby risottos and pasta’s, which I know we can’t rely on forever. 

Have you a favourite free from product?

I’m struggling for one favourite… Hipp baby pouches have been great for leaving in my bag, so we always have some food to hand. Spagbol is her favourite. You can top it up with side dishes if restaurants are confident they’re dairy free. 
The Organix baby snacks range have also been our friend, as she sees herself eating ‘crisps’ etc like other children do. 
Koko coconut milk became a staple as she seemed to develop a problem with the oat milk we started her on she was first weaned from breast milk. 
Finally, when I was dairy free I would treat myself to Sainsbury’s free from mini cakes as a cheer me up – much-needed when sleep deprived, and often on a tempting three for two! 

Is there one product you wish you could find for your child what would it be?

A dairy free bread that doesn’t taste terrible.  She just won’t entertain it.  I’ve just been told about dairy free ‘thins’ so we’ll be trying those soon.   

Do you find your family and friends understanding?

“Even the people who

love you don’t get it

unless they live it.”

 

Even the people who love you don’t get it unless they live it.  I’ve had: ‘they never had that sort of thing in my day’; ‘doesn’t look like it’s doing her any harm‘; ‘a little bit won’t matter‘; ‘it’ll do her good to get used to it‘ and other variations on the theme. You do frequently get the ‘kindly’ suggestions that you’re making a mountain out of a molehill and overreacting.  It’s all well intentioned, but does get frustrating and emotionally it can feel a little isolating at times. It’s those times when the online community comes into its own – you’re reminded you’re doing ok. 
Ignoring her explosive bottom days, her worst periods for pain are evenings and nights, so people don’t see her really suffer. They only see the happy little ball of energy and cheekiness she is during the day, so I do get why they don’t fully understand. 

 

How do you find eating out with a child with  allergies?

“Even at playgroups I

take my own (food) as you

can never be sure about 

cross contamination.”

I take my own. I went dairy free for 12 months, so I know it’s a mine field. I’d phone in advance to check, or ask the chef on arrival and still the following day she’d be ill. We got to the point where we didn’t really eat out (bowl of chips anyone?) as it became frustrating for family and friends.
Now I always have two meals worth of food (pouches) and snacks with me at anytime, just in case. It makes a huge difference to our social life. Even at playgroups I take my own as you can never be sure about cross contamination. 
I do always ask if it’s OK to feed her our own food before we order in a cafe or restaurant,  and I explain why. We’ve never had a problem from restaurant staff so far, but that may change as she gets older. Some friends don’t like it though, they feel embarrassed. 
 

Did you and your family go free from also?

I did for the period I was breastfeeding but have gradually reintroduced. I made two mistakes:  I put all my energy into making sure she had a balanced diet during weaning and didn’t take care of myself. My health suffered. I also didn’t introduce dairy slowly enough at first and developed an intolerance, so I had problems after reintroduction.

I’m taking it more slowly now so it’s getting easier but I still can’t eat a margarita pizza. We put in a ‘no sharing’ food rule with everyone else, so that she knows she can’t help herself to other people’s foods, and also that people don’t eat from her bowls or plates. They often forget that not washing their hands can have an impact. I carry around wet wipes for if we’re out and about and people are snacking and there’s no hand washing facilities. 

Suzanne with her daughter
Suzanne with her daughter

Thank you so much Suzanne for taking the time to tell us your story. So much of your story resembles my own – the having to fight to be heard and all the time your child in pain,  the Mammy-guilt for leaving my child in pain for longer than I might have had I known more, the ‘kindly’ suggestions that you’re making a mountain out of a molehill or the comments ‘just a little won’t hurt him/her’, the frustration eating out etc. I also identify with the reliance on groups and information online, it is a huge support. When my boy was first dairy free there wasn’t much online which is why I started this blog in the first place but there is loads of support now which is a great thing to see. I wish you and little L all the best. Thanks again.

 


If you would like to take part in this interview series of real life allergy stories on dairy free kids, please drop me a line laura @ dairyfreekids.ie


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