Thursday, 28 June 2012

Cow's Milk Allergy? Got any advice for me?

I've been trawling the internet looking for useful information, but I really seem to be drawing a blank.

Given the fabulously supportive network of people on Twitter and in the blogging community, I'm really hoping someone might be able to help me out - our GP has been worse than useless.

Some background:

Ruby was an absolute dream of a baby right up until she was 6 months old.  She slept all night, was happy and very alert.  I breast-fed her but she had a bottle of Aptimil formula at night.

At 6 months I weaned her, and she started with the usual mush.  The very first 'food' that passed her lips was a Petits Filous which she LOVED.  Generally a good eater, she enjoyed fruit and veg, scrambled egg, cheese pasta etc etc.

But from around this age, it all went wrong.  She practically never slept through the night again (at 4 and a half she still doesn't sleep through every night).  She was wingey and winy and cried a lot more than she ever used to.

Admittedly, around this time lots of things are happening, not just the transition onto solid food.  She started teething - each and every tooth was a nightmare, and she got very ill with each one.  She became more aware of her surroundings and this is typically where separation anxiety starts up.

I carried on breast-feeding her at bedtime up until her 1st birthday.

Ruby has always had a big 'round' tummy.  Even as a tiny breast-fed baby, she had what looked like a beer belly.  I mentioned it to several doctors and health visitors along the way, and they told me this was 'normal ' even though none of my friends babies or my nieces and nephews - in fact no other baby I knew - had a belly quite like this!

And so we carried on.  With sleepless nights, endless runny noses and night time coughing.  We went to the doctor who dismissed it - children are always picking up bugs so it was probably one cold after another I was told.

I went back again and said her nose NEVER stops running and her coughing is keeping her awake at night - could it be an allergy? Could we get her tested? At which point we were prescribed some anti-histamine.  It cleared up a bit.

By the age of 2 and a half, Ruby was complaining of a tummy ache.  Back to the doctors.  'Nothing to worry about.'

By the age of 3, she was complaining of tummy ache not quite every day, but very often.  One day I was phoned by nursery to say she was huddled in the toilet crying so much because her tummy hurt.  I took her straight to the Health Centre.

She was poked and prodded.  I was asked whether she vomits.  How is her poo?  Because she was neither sick, nor had constipation/diarrhoea I was told it was 'unlikely to be anything - probably just growing pains'.

Off we went.

The sleepless nights continued.  She'd thrash about at night, crying out in her sleep, scratching furiously - or wake with inconsolable tears.

Several more times we went to the GP.  Each time we were sent away.  On our last visit, the doctor sent her out of the room.  She asked me lots of questions about her general behaviour (rather than her health) and basically told me she was probably having me on.  This was more than likely attention seeking.

I was told to ignore her complaints of tummy ache for one month.

I felt like a monster.  She'd be clutching her stomach, pleading "but Mummy it REALLY hurts. It hurts all the time, deep inside my tummy".

Ruby had been having milk at night time right up to now (aged 4).  Frankly, with such erratic sleep, I was too scared to change her routine, so stuck with what I knew would send her off.  At age 4, she accepted she was 'a big girl now' and didn't need a bottle of milk at bedtime.

Instead she'd take water to bed - she still wanted the comfort of a bottle/beaker to hold.  But her sleep improved.  We'd get maybe 4 nights a week where she'd sleep through.  We no longer had so much of that crazy thrashing in the night, the runny nose and the cough.

It was only one night, when she'd asked me for some cereal before bed that I pulled all this together in my head.  That night, after a bowlful of cereal with milk, she was back to her old self - thrashing about, scratching madly at her skin, crying, waking up.

This was about 3 weeks into the 'ignoring her' phase and I decided enough was enough.

It struck me like a lightening bolt that maybe she had an allergy to milk.  After lots of conversations on Twitter, and some Googling, I felt it was unlikely (due to her age) that she was lactose intolerant, but maybe she as intolerant or allergic to cow's milk protein.

Se we tried our own diet experiment, totally cutting out cow's milk from her diet.  This was a challenge - she tried and didn't like - soya milk; rice milk; almond milk; goat's milk; hazelnut milk.  We finally settled on buffalo milk - which didn't seem to have any adverse effects on her, but is devilishly hard to find in the shops!

She loves goat's cheese and butter so that's fine.

However, after not being able to get hold of buffalo milk for a few days, we tried again with goat's milk.  She'll drink it, but within a few hours she was complaining of a tummy ache - the first time in 6 weeks since we cut out cow's milk.  Sorry - this may be too much information - but her poo has changed too in the last 2 days of goat's milk.  Although not diarrhoea, it's not 'formed' properly and is broken into lots of little bits if that makes sense.

It may also be relevant that she always had peculiar smelling breath - kind of yeasty?  That's now gone too.

Is it possible that she can be ok with goat's milk products (yoghurt, cheese etc) but not the actual milk?

At age 4 and a half, how much dairy does she still need in her diet?

Where do we turn next?  Am I going to have to face the GP again and tell her what we've discovered?  Can I insist on a test?

Please help if you have any experience of allergies or in tolerances because I don't know where to turn. x


  1. Caroline Burton28 June, 2012 18:10

    Hi Liz- interesting reading this- poor Ruby! I have some of the symptoms sounded familiar- the itching, bloating, stomach pains and other unpleasamt symptoms are things I experienced due to my gluten intolerance so don't know if lactose intolerance has the same symptoms?? xx

    1. Hi Caroline.

      I really don't know - or perhaps it was the cereal rather than the milk, maybe it's gluten/wheat with her too?

      I just want to know for sure, so we know how to handle it, and I really don't think I'd get a positive response from our GP. x

  2. Hi, my son has multiple allergies, some severe. He was referred to a consultant at 6 months old after having an anaphalatic reaction to peas but he is also intolerant to dairy - as a baby he never slept well (normal? : ) but he had eczema which was getting worse - as soon as we cut out dairy it disappeared almost overnight!
    I would say push for testing for as many suspects as you can think of, maybe try another doctor in your practice?
    Hope you find some answers,

    1. Hi Sian, thanks for your advice. Goodness your son's allergies sound very severe - how scary for you all.

      Sadly our doctor's practice is a father and daughter team and they are both pretty useless! I have no idea how much private testing would cost. We do have private healthcare through partner's work, but we have to pay the 1st XX amount.

      I guess I could ask for a 2nd opinion on the NHS?

      I just hate going because they make me feel like a neurotic mother, even though I know something's not right. x

  3. Sounds more likely to be an intolerance than an allergy as an allergic reaction is fairly acute (think hives, difficulty breathing, rashes, that sort of thing) and passes quickly whereas an intolerance is a slower reaction that lasts longer.

    Try this page on Allergy UK

    And follow its advice. Their helpline would also be good to call for some informed advice.

    1. Hi Kate,

      I did read that page and decided it would be too tricky cutting out different foods one stage at a time. She goes to nursery 3 days a week (eats breakfast lunch and tea there) and telling them one week she was off this, another off that I thought would be a nightmare.

      So we just stopped all cow's milk products and replaced with other forms of dairy. It's a bit pot luck trying things until we find one she seems ok with, and I've only done this because nobody else was helping (NHS-wise).

      Thanks for the helpline number, I may give them a call x

  4. Oh Liz, such a worry. Doctors can make parents feel really bad sometimes and I hate that. I read somewhere that more than half the population are intolerant in some way to cow's milk (and we are the only species that drink's another's milk). I've never liked milk and don't drink much, but recently I did a 'vegan challenge' and cut out all dairy products and I felt absolutely wonderful as a result. I stopped when moved house but I'm going to go back to it soon. My advice is to try again with the non-dairy products, introducing them gradually. I really like the Alpro soya yogurts and 'milks' - but understand if Ruby didn't. On the other hand, I think children and people in general do adjust to eating what they need. If there are no Frubes etc on offer after a while Ruby might really appreciate a soya dessert? We don't actually need dairy in our diet at all, but it does require commitment and knowledge. The vegan society provide a lot of information about children's diets, so you could contact them? Good luck with it all, but don't take any nonsense from the doctors - I think as parents we KNOW when something is not quite right, and they should acknowledge that intuition/personal experience. (Sorry for rabbiting on!) Mx

    1. The 'Establishment' make you feel so guilty though about 'lifestyle' diets as they seem to like calling them.

      I also doubt I'd have the patience or staying power to stick to a totally vegan diet. Things are already tricky when eating out; eating at friends and family and knowing what to tell nursery etc.

      I'd just like to know for sure if there is an intolerance/what specifically it is then I'll be able to adapt accordingly. x

  5. Are in or near Hertfordshire? I'm running an allergy support group meeting in July. I have a Consultant Paediatrician and an allergy nurse coming in for a Q&A session. If you're near maybe you could come and ask them.

    I think really your GP needs to refer you to a Paediatrician. There is obviously something going on with Ruby whether it is an intolerance, an allergy or something else.

    1. Hi Madison, that sounds great!

      I'm in Bedfordshire so not too far away. Could you let me know where/when and I'll try to come along.

    2. I think I've just sent you an email with the allergy support group poster attached. My pc has gone a bit doolally. Will you check to see if it has been sent? If not I'll try and send again.


    3. Just sent again. Has it arrived?

  6. My third son was diagnosed with lactose intolerance at 3 months after 3 months of screaming, general ill health and misery and within a week of changing to soya milk, he was a different child. Luckily he grew out of it but at the time we discovered that OH has it too. He has rice milk or soya milk and can tolerate normal yoghurt but milk, cream or cheese has a really dramatic effect on him. Going back to your situation though, you should absolutely push to get her tested it is a really simple process. After a positive diagnosis you should also be referred to a dietician, we were and it was so useful!

    1. Yes, I think I'm going to have to go back to the GP.

      They are the sort of doctors who hate patients with knowledge! Thinking maybe I'll take OH in with me for back up! x

      Did your OH have similar symptoms? Can you tell me about the test? Is it blood test? x

    2. Well OH gets the runs now (sorry) if he has anything he shouldn't but prior to being diagnosed he had migraines, bloating and skin problems all which cleared up after e changes his diet. He still has chocolate sometimes and ice cream but he can't have much. With L it was a stool test OH hasn't had a test, he just worked it out with what we went through with L

    3. Haha, he'll love you for sharing that!

      Thanks that's helpful though x

    4. Good luck with it I hope you get it sorted. The only other thing you need to be careful is to check the 'sweetness' levels of milk substitutes as they can cause teeth problems. I know soya baby milk is sweetened with apple juice but not sure about the more grown up milks x

  7. If it cleared up when you got rid of the milk - it's more apt to be milk (but there can be additional allergies). She needs calcium not dairy. She can get it from broccoli, spinach, small fish (ones eaten with bones such as sardines). These are more difficult to eat on a regular basis than milk so you might want to try a supplement (or adding powdered eggshell) to her diet. She doesn't have to drink milk. There are times when milk is nice but try offering her something like flavored non-dairy drinks. Chocolate almond is a favorite in my house. She might enjoy it with her cereal.
    When it comes to her tolerating goat cheese but not the milk - that's because the proteins have been altered. Many can tolerate cheeses and not the milks.
    You can also try adding the non-dairy milks slowly. Give her just a little more than a drink and increase it as she wants to. She's at that age that introducing new foods is tough but keep at it. Let her know that it will help her tummy. I don't know how it is where you are but here we have a ton of flavors and types of non-dairy milks. Have you tried Hemp milk?

    1. Hi Sara,

      Thanks for your advice. Really helpful. It made me smile - we used to give ground eggshells to our chickens, same principle I suppose!

      She likes the hazelnut milk mixed it chocolate - tastes like Nutella.

      I guess it will be easier when she starts school in September and will be taking packed lunch. I'll be more in control. x

  8. don't think I can add anything to the above but my sister-in-law says that if you're worried about calcium there's plenty in tuna... and if she likes tuna it's win-win

    1. Thanks Dom. Oddly she used to love tuna, but now says she's gone off it! I still manage to sneak it in though in pasta bakes and the like.

      I'm hoping with all the goat's cheese she eats too, she should be getting enough. x

  9. I discovered I'm lactose intolerant at the grand age of 28! Years of sinus infection and IBS and finally one GP suggested I cut out milk. Some days I can eat ice cream and I'm fine, others I'll have a terrible tummy ache! I have goats milk but unless It's skimmed, that can still set me off on a bad day. I can't tolerate cow cream or butter at all since the initial removal from my diet, it seems to be related to the fat content as well as the lactose. Fat free cows yogurts are fine. It's really trial and error, I also carry lactase enzyme tablets in my handbag but I think that's not really a solution for a 4 year old!

  10. I discovered I'm lactose intolerant at the grand age of 28! Years of sinus infection and IBS and finally one GP suggested I cut out milk. Some days I can eat ice cream and I'm fine, others I'll have a terrible tummy ache! I have goats milk but unless It's skimmed, that can still set me off on a bad day. I can't tolerate cow cream or butter at all since the initial removal from my diet, it seems to be related to the fat content as well as the lactose. Fat free cows yogurts are fine. It's really trial and error, I also carry lactase enzyme tablets in my handbag but I think that's not really a solution for a 4 year old!

    1. Wow, that's a long time to be suffering, glad you've got it under control now.

      Really interesting about the fat content though, I didn't know that. Maybe I'll try her on skimmed instead. Thanks so much.

  11. Thanks for pointing me in the direction of you post! What you said about going from a happy baby to one that would not sleep etc is exactly what has happened here with Millie. I am not holding out much hope for help from the professionals but will keep pushing! Hopefully you will get it sorted for Ruby too! xx

  12. it seems to be related to the fat content as well as the lactose. Fat free cows yogurts are fine. It's really trial and error, I also carry lactase enzyme tablets in my handbag but I think that's not really a solution for a 4 year old!Baby Milk Formula