Dear CCG (Clinical Commissioning Group) and the NHS ,
I am a mummy to two children who both have milk allergies. Archie who has just turned three was lactose intolerant , he grew out of this by the time he was 15 months old. Frankie who is 22 months old has cows milk protein allergy and is also lactose intolerant. Frankie is yet to outgrow her allergies and still has a dairy free diet. She is prescribed Neocate , an amino acid based formula and will continue to be prescribed this until her second birthday.
We went through a horrendous period in parenthood instead of enjoying and embracing the new born stage we were filled with worry and upset trying to work out what was making our babies so ill. Archie wasn’t diagnosed lactose intolerant until he was 5 months old. He used to cry in pain , projectile vomit after nearly every feed , have trouble feeding and was generally unhappy and unsettled. This was heart breaking watch as a parent and I felt like such a failure for not being able to help my baby. Watching them cry in pain for hours on end and not being able to help is completely soul destroying. Archie was prescribed SMA lacto free formula and was a changed baby within 48 hours , he was almost symptom free and we had a happy baby.
Frankie was diagnosed when she was 9 weeks old her symptoms were more severe than Archie’s. She would cry for hours on end in excruciating pain , she also had severe diarrhoea after every feed and eczema that was infected and oozed puss. It took three different milk trials and a hospital admission to get the correct treatment for Frankie. Once Frankie was started on the Neocate formula she was also almost symptom free and happier within a week. It was a struggle to get that prescription for her as it carries a price tag of £38 per tin , these are half tins and we were using four tins a week at one point.
Having access to these formulas was fantastic as breast feeding was not an option for me , I had tried and not been physically able to breastfeed. This in itself was truly crushing and so stressful for me. Some mums with allergy babies can breastfeed if they also have a dairy free diet as dairy can be transferred to the baby via the breastmilk. If babies have various different allergies this can be more difficult for the mother as its hard to know exactly what is causing the baby to react.
I’m totally shocked and appalled at the decision the CCG (Clinical Commissioning Group) has made to ban writing prescriptions for dairy free formula in some areas in the UK. If this had been brought in to place when Archie and Frankie were babies I know that we would not have been able to afford £608 a month in formula for Frankie’s Neocate milk. Croydon CCG has already brought this proposal in to place.
It is so stressful having a baby with allergies and watching them cry in pain and see how unhappy they are every day. Even though it’s not your fault as a parent you convince yourself it is. I did exactly this and felt guilty and blamed myself for not being able to breastfeed. I would sit down at night and sob and think this is all my fault if I was breast feeding her she wouldn’t have this allergy and she would not have to go through this.
If I had to see Frankie in pain any longer and not be able to get the milk on prescription I would have sunk in to the grips of post natal depression. To be completely honest I think it had already set in and had a hold on me before her diagnosis , it has taken me nearly two years and writing this blog post to admit that to myself. Seeing her the way she was is something I would not wish on any parent.
I also had a 15 month to look after and with a baby that cried literally all day and night and would only settle on me, this was getting increasingly harder and taking its toll on all of us. Archie must have been so confused as to why this other little person we had brought home was so sad and also made mummy sad – this is how he would have seen it in his eyes as he was far to young to understand.
It would have had a huge affect on us financially , even though James works and does have a decent job we wouldn’t have ben able to find an extra £600 plus a month. I would have had to go back to work and give up on the idea of being a stay at home mum , which is something I always wanted to do.
Even if I had got a job it would have had to be full time which would have meant paying childcare fees for two and covering the cost of the milk. I would have also had to leave Frankie at 10 weeks old to be able to do this. The other option would have been to get a loan to cover the cost of the milk for two years which would have been £15,000 plus this would mean high loan repayments each month which would have destroyed us financially.
We are lucky that Archie has grown out of his allergy and we are hoping Frankie will too. They are now both happy toddlers but things could have been so different if they did not get the treatment/prescriptions they needed , they could have been very poorly.
CCG if you are reading this please don’t do this. Think about how this will affect thousands of babies and parents.
An allergy mummy