Thank you for our chat. I am writing this just to let off steam to someone who will not fob me off!
Mary was born 20th January 2005, five weeks early weighing 2 kilos and right from the start there was a problem. The midwives took her straight off into a special nursery. After an hour my mum and husband were allowed to see her but warned - ‘Don’t wake her. It has taken me 3/4 hour to get her to settle after her milk. She hasn’t stopped screaming.’
The next day Mary and I were reunited but the bonding process had gone as I had not seen her for 24 hours. In my drug-induced state I didn’t even realise I’d had a girl. Anyway I gave her milk and noticed she wasn’t drinking properly. After that she had to be tube fed 30mls every two hours but after 15 minutes feeding she screamed non-stop till the next feed. By the end of the day we were both exhausted. After 11 days in hospital we were discharged.
At three weeks she was given Infacol to help her with colic. This did nothing! At five weeks we gave her Wysoy (soya formula) as I felt that, like her older brother, she couldn’t tolerate ‘normal’ baby formula. She was no better so, with the health visitor and doctor, we decided on a lactose-free formula.
Three months later a hospital paediatrician told us that milk intolerance in babies was quite common and that Mary would grow out of it by the time she was two. We were put in touch with an invaluable dietician who told us that Mary had an intolerance to milk and soya, and suggested SMA lactose free formula.
As we introduced solids we noticed that Mary got a rash if she had food with milk. The dietitian confirmed that it was an allergic rash and suggested that we excluded all milk from Mary’s diet. When, occasionally, milk slipped through, Mary would scream for hours, have a blocked nose, wheezing, a rash on her tummy and be very pale. Nappies would be constantly runny. Yet again it was the dietitian who confirmed that Mary was having an allergic reaction and referred us to a paediatric allergist who told us in no uncertain terms that Mary was atopic and we were being over protective!
So we did as we were told and reintroduced milk only to find that Mary’s rash got worse, she struggled to breathe and had to have inhalers, and her nappies got runnier. Yet again it was our dietitian who advised that Mary should not have milk or soya in any form and should also avoid eggs.
Recently we saw another paediatrician who again saw no reason why Mary couldn’t have the foods that affected her. Mary is now two and I can honestly say she has not improved; if anything she has got worse.
We have just come back from our GP who, because he cannot pigeon-hole Mary, refuses to listen to me. Three days ago Mary ate something that contained milk as we were at a friend’s house and I took my eyes off her for five seconds.Within three hours she was covered in a raised red rash. She was uncomfortable, went very pale, her nose was blocked and her breathing was a rasp. She wouldn’t eat or drink so I knew her throat was swollen.
After three days I took her to the GP as she was not getting better. Even Piriton only seemed to make her drowsy. What my doctor said astounded even me. I was told she had a viral infection and there was no cause for concern. If she had had an allergic reaction her lips would have turned blue, and as they hadn’t, how could I prove that it was an allergic reaction. I was told to just get used to Mary’s food intolerances and give her Calpol to bring down her temperature.
Being a mother is hard work at the best of times but when you have a child with intolerances/allergies it is even harder. It seems unless you are prepared to battle every obstacle, there is very little help out there.
Thank you for taking the time to read this. I’m not sure if it has made me feel better or worse to have written it - just more determined to fight my cause. I’m sure I’m not alone and no doubt your magazine will help me realise this.
Click here for more personal histories
First published in 2007
Back to top