Milk allergies, motherhood and me by Rachael Fairclough
BABIES need milk but what happens when they are allergic to it? Mum of two Rachael Fairclough, of themummyblog writes about how she survived the ordeal and what help is out there for other desperate parents.
Milk. I love it. My children don’t.
Within days of Violet being born, she screamed and screamed and screamed. During the first six months of her life we were at A&E, the walk in centre and the doctors constantly. In fact I believe we were in these places more times than the doctors themselves. So much so that one of the doctors became a friend!
Violet had a severe milk allergy and silent reflux. I say had because she has now outgrown this allergy, thank goodness, but we still have Pearl who has the same allergies although the milk allergy in Pearl is not as severe as Violet’s was but her reflux seems worse and is still a battle for us.
Both allergies are very difficult to diagnose and the symptoms are very similar. I remember spending the first precious weeks of Violet’s life with no sleep and no clue what was going on.
Infant acid reflux
“Part of the reason why I am writing this blog is because hundreds if not thousands of people are going through what we went through and they don’t actually realise what their child has. Milk allergies as well as silent reflux are more common than you think.”
Both girls had similar symptoms , grunting, arching back, screaming constantly after feeding, explosive poos, trapped wind, unhappy, restless and a lot of obvious pain…. Reflux and cmpa can be similar symptoms to colic…and if it was a good day or a rare peaceful moment, when people saw Pearl or Violet they would say “she looks ok to me!” Arghhh!
We were told in A&E a few weeks after Violet was born that basically her insides were burnt from the milk she had been drinking as she was allergic. She also had very severe silent reflux, which meant that although she wasn’t projectile vomiting like ‘normal’ reflux in babies , milk was still coming up her esophagus and burning her throat. The milk that she was allergic to!
It took around nine months to get everything totally under control for Violet.
Meeting Dr Bresnan
One day while in A&E we came across the most marvellous consultant and luckily for us he specialised in milk allergies. Doctor Bresnan, (not even sure of the spelling of his name so apologies) in Sunderland General hospital. Dr Bresnan and his team changed my life. Well they helped me get a life, I should say. But, It wasn’t until my second born, Pearl, that I realised how important Dr Bresnan would be.
Another thing that saved my life and helped me cope with these allergies was social media. Part of the reason why I am writing this blog is because hundreds if not thousands of people are going through what we went through and they don’t actually realise what their child has. Milk allergies as well as silent reflux are more common than you think.
It was on our fourth, maybe fifth, visit to A&E that Violet developed a severe milk allergy rash. She had red wheals on her skin but I can only describe as giant welts. Dr Bresnan identified the allergy straight away and was able to give me the correct medication and advice that was vital to controlling her symptoms and helping her. Dr B was great and so was my GP. I was lucky to have such expertise at my finger tips.
Some people might call it unlucky but I was expecting it. When Pearl was born 18 months after Violet we were prepared for her to have a milk allergy. We actually had special milk already in, not the prescription kind, but an SMA one.
I was determined to try to breastfeed but unfortunately this didn’t work out. I had no milk, even though we tried everything possible and I mean everything. For two weeks solid my nipples ached, bled , they were bitten, prodded and they were sore. We even had a tiny tongue tie snipped in Pearl which was a trauma in itself to see if it was that. It wasn’t that and I often wonder if it was worth it. We had no sleep, we cried and the baby cried but we needed to get milk into her.
Pearl was born very close to Christmas and on the day before Christmas Eve I remember ringing Dr Bresnan begging for a different prescription milk. This is when he saved my life. We had been on a partially broken down milk but it looked like Pearl needed a totally lactose free milk.
Support and social media
As I said before social media has lots of support networks on the subject. I joined as many as I could on Facebook and they really did give me the support I needed. I joined reflux support groups, cmpa allergy groups, silent reflux support groups and in one of these particular groups I came across one mother with similar problems and she became a friend to me and would always encourage me to keep on at doctors etc.
I used to write notes about what symptoms Violet had to show doctors and with Pearl I did the same and I used to also keep a diary. I would advise any mothers to do this if you suspect your child or baby may have an allergy. I used to share these with the groups and ask for advice too before going to the hospital or seeking an appointment.
Another little tip for visits to the doctors and A&E – I would take along pictures of Violet when her skin was particularly bad and red raw from her allergy – pictures are important and proof you are not making it up and these allergies can flare up and down. I’m lucky because we caught Pearl’s allergy a lot faster than Violet’s. Experience I guess.
Pearl seems to thrive on the prescription milk, Violet hated the milk. When I say milk it was a substitute milk nothing like milk at all and it smells foul. In fact it smelt like cheesy vomit and old socks.
Groups I joined
Babies with reflux, silent reflux, reflux in babies, groups of mothers with babies with CMPA, reflux support groups, supported on mothers with babies with CMPA and reflux, milk allergies and intolerance parents group, allergy buddies, the list is endless.
I joined every group. I was on a mission. I researched the symptoms and contacted every group almost weekly during Pearl’s diagnosis and nearly every day for two weeks while we struggled with medication. We finally managed to get Pearl under control after a few weeks, but Christmas 2014 was a blur.
One of the things which came out of Pearls allergy as I mentioned earlier was I made a new friend from one of the Facebook groups. Helen. She too has a daughter with milk allergy and possible reflux and although I don’t see her often she is on the other end of social media for support. There are many more women and men out there on these groups to help and that’s what makes this livable and that’s what helps parents survive.
Pearl is on 5ml omeprazole (prescribed after the fourth visit to A&E), she has two infant gaviscon for every bottle and is on Neocate milk. Neocate is totally broken down substitute milk. The other substitute milk Violet was on was called Nutramigen, this is also lactose broken down but Pearl needed further broken down milk with no lactose in.
Of course the girls tried several milks and medication before their ‘fit’ was found. We had tried ranitadine with both girls but that didn’t work, we also tried lactulose but that appeared to give them tummy pains. Due to the infant gaviscon we struggled with the bowel movements for both girls during their few months! I tried every tip I could and I bought everything I could to help both girl with their allergies/reflux and now constipation.
I’ve just added this into the blog as I nearly forgot! Bottles are key to controlling these allergies if you are not breast feeding. Without a doubt and I’ve tried every one. I found MAM bottles are the best and the teats seem to get the milk and gaviscon out the most easily. I recommend them to everyone. They also help with colic and can be sterilised in microwave without a steriliser. Genius!
Slowly but surely Pearl has improved under our watchful eyes and with support from Dr. Bresnan, his team and the groups I joined we have been able to keep her symptoms under control and help her. I am a pro at milk allergies and reflux …so much so that I started a Facebook group. I have come across so many people with this problem too in conversations with friends and colleagues and hopefully I have helped them.
I can’t believe how rapid this problem is becoming in children though and often wonder if there is anything I could’ve done to prevent it? I’m told not.
Living with a milk allergy and reflux , particularly silent reflux is hard but we have done it for three years we are doing it everyday and we will continue to do it for as long as it takes – my family will always take priority.
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