When I discovered Archie and Frankie first had a milk allergy I had to fight various health professionals firstly to get them to listen to me and secondly to get the right treatment. Archie showed signs of a milk allergy from four weeks old. I knew this wasn’t just colic as he cried day and night and would be arched in agony. I went to the doctors maybe once , twice a week for 4 months until someone finally listened to me and agreed that he was possibly lactose intolerant.
It was the Health Visitor that finally sad enough is enough and approached the doctor before my appointment to say that she suspected that Archie had a milk allergy. I still cannot believe it took four months despite the fact that colic remedies had not worked and Arches dad was in fact lactose intolerant and it can run in families.
This time I was not being fobbed off and I would get the right treatment for my baby. The doctor agreed to give Archie some soy prescription formula to start with and see how he got on. So like us Mum’s do I went home and did some research about soy formula. I could not believe what I was reading , some studies had shown that giving soy to males under one could lad to fertility problems in later life. I had no choice but to continue to give my baby milk that was making him so poorly until the morning.
I phoned the surgery and asked to speak to the doctor I had seen the previous day. I explained to the doctor what I had read and that I didn’t want Archie having this formula. I was told he had been given this to start with as it was the cheaper option! I was told to try the milk and see how he got on. There was no chance I was going to give Archie this milk. I phoned back and asked to speak to another doctor who agreed to prescribe a different milk. Again I was fighting to get my son the medicine he needed. Prescription milk to allergy babies is their medicine as it helps them to get better and also feeds and nourishes them. I could not believe the right treatment was being based around cost and not what was best for him.
When Frankie came along my worst fears had come true when it transpired that she also had signs of a milk allergy. I was heartbroken and just kept thinking I don’t have the energy to fight these health professionals to get my baby the treatment she needs.
I was more prepared and clued up this time , there was no fight as the doctor agreed with me. I think he could see that I knew my stuff and wasn’t going to back down and accept being fobbed off. A week had passed and Frankie was still the same if not worse.
Back to the doctors I went and was prescribed a different milk. Another week and again she was getting worse not better. I had done my research (because you have to do a lot of this as an allergy parent) and came to the conclusion that Frankie may be cows milk protein allergic. The milk Franke had been prescribed Nutramigen still had cows milk protein in it but in a broken down form which some babies can tolerate. I had come across a milk called Neocate and I asked the doctor if he could prescribe this.
I was told that I could not have this milk as it was £30 a tin and I would need a few tins a week as they were small. At this point I had enough and had no fight left in me , I broke down in tears but was still sent away to persevere with the milk. My baby didn’t sleep , cried day and night and was covered from head to toe in eczema which was now seeping puss.
That afternoon was my worst as a parent as mentioned in my previous blog post about the heartache of allergies. Frankie was screaming in pain and almost purple in colour where her skin was so irritated from the eczema. I rang my Health Visitor in floods of tears and told her that I could not cope anymore. She was at my door within 10 minutes and had gotten me an appointment at the hospital with a pediatrician within 20 minutes. I will never be able to thank that lady enough.
The pediatricians were amazing and prescribed her Neocate straight away and even brought it to the ward for me to give her a bottle. She took to the bottle straight away and drank it all , it was so lovely to see my baby enjoy a bottle. They gave her antibiotics for the infected eczema and creams to treat it. Within a week she was a different baby and her skin was clear. She was diagnosed cows milk protein allergic and lactose intolerant. The Neocate was vital to her as it is amino acid based and had neither of these allergens in it.
Looking back I still get so upset and angry because I cannot believe how many people I had to fight to get the right treatment. Parenthood is hard enough without having to fight people to get your baby happy and healthy. I really do believe that health professionals need extra training in this field to help support parents.
My advice to anyone going through this is don’t back down and remember parental instinct is always right.