Tuesday 20th August had been a date I was anxious about for the past 2 months. When Emelie had started to react to foods as well as formula milk, I needed answers, real ones, not the could bes of an uninformed GP who was reluctant to prescribe her expensive medication and Non-milk formula!
We arrived at the RVI, Newcastle at 9am for our appointment. The journey there had been an emotional one for me, as I was reminded of my many visits there when being treated for Accute Lymphoblastic Leukaemia almost 21 years ago. Still, I knew that her symptoms would finally be taken seriously and at last we would hopefully be given the answer to the conundrum which had plagued us since the night Emelie was born.
Emelie was weighed and measured and I was reassured that she was developing and growing well. Then, we went in to see Dr Chris Richards, who I had already researched online. I presented him with Emelie’s Food Diary and Notebook, a book I have compiled with the research I have done along with observations of her reactions. It also contains the ingredients of most meals that she has eaten, colour coded by individual, problematic foods. I explained Emelie’s intial feeding problems, how we had called an ambulance the evening she was 4 days old as she was completely unresponsive; I also informed him that the ambulance crew had explained that she was in a deep sleep. He turned to me then, in sterm seriousness and asked, “and was she asleep?”…No…she hadnt been asleep…she had been unresponsive, twitching as if on the edge of a seizure and taking 3-4 breaths each minute.
We then explained that 2 weeks ago, when reactions had become less frequent, we had halved Emelie’s medication and that last week, we had stopped it. It had been the correct thing to do, he said.
Giving her small amounts of the foods she had reacted to, to build up a tolerance, had been the right thing to do too, he said.
Keeping Emelie on Neocate LCP had been the right move, he said.
Calling the ambulance that night had been the right thing to do, he said.
Then, he gave me the nicest line I’ve heard from any human being since Emelie’s issues began:
“You’ve made my job much easier by keeping these notes and doing what you’ve done, because you have made her better.”
He then, using the information I had presented him with, agreed that Emelie did have an intolerance, to fructose most likely, which is extremely rare. He had initially thought Lactose, however my research on the glucose/fructose ratios in the foods she reacted to leaned him towards the rarer of the two conditions.
He then congratulated me, suggested trialling her on formula, and left open the door to further appointments through his secretary if required. He didn’t think there would be any need for a follow-up appointment.
In that 30 minute interval, I realised that everything I had done was for the right reason and had the desired effect. Giving up work to care for Emelie had been the right thing to do…managing her diet so strictly had been the right thing…researching and looking for help and support from other parents had been the right thing too, and has helped me more than anything else…
So off we went, into our lives again, managing Emelie’s health independently, and now much more confidently!
The moral of the story? TRUST YOUR INSTINCTS and push for what you think you need from professionals…intolerances are on the increase, my next job, is to try to find out why so I can help as many other families as I can!!!