Ok so those that know me will know that I have been slightly worried since receiving what seemed like a
‘too good to be true’ offer…
A few weeks ago I received an email inviting me to a media briefing in London about cows milk protein allergy. When I looked at the cost of the train I decided that despite its usefulness to me along with anyone reading this, I couldn’t justify the expense. When I replied to that effect I was told that they could cover the cost of the train and book it for me!
Now, I am sure you are wondering who ‘they’ are…and so was I! I did some research and discovered that
it was Tonic-Life Communications working with Abbott Nutrition, a company 125 years old that have been supplying nutrition products to the NHS for 30 years.
I was still worried…particularly after being offered the train fare! But, putting aside my fears that I would turn up and be kidnapped (yes I do have an over-active imagination, especially in the middle of the night!), I jumped on the train and set off to London while it was still almost dark.
Now, on my way home, I am so glad I did!
The event had been put together by Tonic-Life Communications and had a superb lineup. When I arrived at the super swanky AVEQUIA nr Fleet Street I was rewarded with beautiful canapes and sandwiches. Refreshments would be provided, I had been told…wow! These were some refreshments..!
At 11.30am I, along with about 30 others, were lead into a super posh kitchen for the briefing to start.
First Dr Nikhil Thapar, a consultant gastroenterologist from Great Ormond Street hospital spoke.
He outlined the differences between allergies and intolerances and covered the diagnosis, causes, clinical
presentation, management and challenges around cows milk protein allergy. Much to my delight he said
that there were two types of cows milk protein allergy…rapid onset (which is certainly what my daughter
used to have), and delayed onset (which is clearly what she now has). I have been fighting with my
consultant about this for two and a half years, since he doesn’t even believe there is such a thing as cows
milk protein allergy, let alone delayed onset! One nill to me!
Dr Thapar also said that more and more children were presenting with allergic conditions and that 5 to 15%
of the population reacts adversly to cows milk protein, with approx. 5% being allergic.
As you would expect, he had little more light to shed on the reasons for these increases, other than genetics, the immune system being immature and gradual changes to our environment.
In terms of diagnosis, he reiterated what I thought, that skin prick tests, blood tests and patch tests were
only useful in immediate onset allergies, and useless in diagnosing delayed onset allergies (so why, dr x, my consultant, did you tell me that my daughter no longer had an allergy when her skin prick test was negative despite serious intestinal upset?!). Grrr!! The only way to diagnose late onset allergies is through elimination diets.
Another interesting piece of information that he gave was that evidence suggests that children may not
grow out of cows milk protein allergy as was previously thought, or at least it may take longer than
originally thought. The form may change but they may keep it. In studies of adolecents with recurrent
stomach cramps the majority had had a food allergy when younger.
Finally he went on to say that 40% of the children he sees have feeding difficulties, whether that be
phobias of food or adversions to food. There is an increase in feeding difficulties of children who have
The second speaker of the day was Dr Sarah Schenker, a dietician who has written a number of books and specialises in cooking for young children, and tackling fussy eaters.
She said that severely allergic babies are often allergic to eggs, soya, fish, shellfish, wheat, nuts and
seseme and that this could be life-long. It was interesting for me to hear that since that is where I have
plans for the future! She also said that babies with cows milk protein allergy are often allergic to soya too.
Again, something I had heard but wasnt sure was accurate.
Next up was Netali Levi, a child clinical psycologist. She outlined the challenges for parents of milk
allergic children along with some coping strategies for the various ages of children. These were all about
managing your own stress and anxiety as a parent, presenting a calm atmosphere at mealtimes, creating
positive associations with feeding, cooking with the children, educating others, talking about the
condition with the child, and acknowledging the childs feelings.
Listening to what she had to say made me realise that thus far we haven’t done too badly! Our daughter is
an amazing little girl. Ever since her coeliac diagnosis just before her 3rd birthday she has understood and
accepted her condition. At that point we were told she had grown out of her cows milk protein allergy,
and it was only when I finally removed it from her diet again a few months ago, that the consultant has
accepted that she still has it! That is therefore slightly more tricky because, having been used to a life of
unpleasant toilet trips she thinks that is normal, and doesnt really understand what all the fuss is about.
Telling her, therefore, that she cannot have dairy because it will upset her tummy, doesnt really bother
her…so we do not strictly remove it or make a fuss about it, generally because she hates any kind of fuss!!
Next up was Rachelle Anderson, a parent who very eloquently outlined her story of having a baby with a
cows milk protein allergy. I sat in amazement as she recounted with incredible detail her journey to
diagnosis, which happened when her baby was 14 weeks. Lucky for her, he had grown out of it by 10 months, pretty much the time when we got our diagnosis following 10 months of torture! I cant even remember when the diagnosis came, nor what happened when. All I know is that the first three years of our daughters life were tough. Very tough when I look back now and accept what we went through!
Anyway, the final presentation was given by Abbott Nutrition’s medical director, who presented the
momentums.co.uk website and associated resources. I haven’t had a chance to look at it properly yet, and
managed to leave my media briefing pack at the venue, so will have to hold judgment. It looked and
sounded great…the baby section is the only live section currently, but there are downloadable resources,
such as questions to ask your gp; the difference between allergy and intolerance and a fantastic recipe booklet. It has been developed with parents and healthcare professionals so should be a good and helpful resource. I am looking forward to when the other sections of the website go live because the baby section is not so much use to me now that my youngest is 4! I am also hoping that they add a discussion forum so that it becomes the place to go to chat to other parents who are in a similar predicament.
In June, Abbott also launched their first hydrolysed formula milk, Similac Alimentum, for babies with cows milk protein allergy. The general issue with such formulas is that they taste dreadful. I still remember the horrifying smell of my daughters formula when I finally stopped brestfeeding at 9 months, so if you have a baby with CMPA why not ask for this new one? According to Abbott’s clinical trials, it is well tolerated and 89% of respondents said their baby liked it. What I didn’t get a chance to ask was how many people were involved in the clinical trials!
Last but not least, we were treated to a cookery demonstration by Masterchef 2012 finalist, Andrew Kojima. He cooked up an array of treats from the recipe book available on momentums.co.uk, including
egg, dairy and gluten free pancakes, pad thai, salmon fishcakes, mango lassi and fruit kebabs. All of
which I have to say, were delicious. He now does cookery courses, demos and other food related things.
Check out his website by clicking on his name, above.
So, I am now almost back in Exeter. Writing a long blog post like this certainly passes the time on a train ride! I hope it has also given you some useful information…as well as acting as a distraction from the journey.
The final thing I would like to add is that Dr Dawn Harper, who chaired the event, summed up at the end with her experience as a GP. She wanted people to know that just because your doctor sends you away with a few suggestions, that is not the end of the journey. If symptoms persist they want you to go back…otherwise they can only assume that what they suggested worked! So, if you are worried about your child don’t just accept what the doctor says the first time…go back and keep going back until you get answers!
Please let me know your experience of the journey to diagnosis. I am beginning to realise how therapeutic it is to write about these things and accept that not all doctors know what they are talking about! So, if it would make you feel better to share, then please do! One day I will write down our whole story!