How did you first find out your daughter had 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?