Reaching London

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In June 2011, we all set off to London for the first of very many visits to GOSH. Walking through those doors for that very first time is an experience I’ll never forget. Having heard so much about GOSH over the years, I had never imagined that one day we would be visiting in what felt like a last-ditch attempt to help our son. I was filled with awe, hope and finally a sense that we would now know one way or another whether something could be done to help him.

It was such a momentous occasion, that we had brought G with us too, feeling that it was important for her to be part of this new journey we were embarking on. I will be forever grateful to her godfather, Uncle A, who was on hand in London and able to whisk her away for an hour to play, whilst Mike, M and I waited to meet his consultant. The only problem was that M really didn’t want to stay with us and would have much rather disappeared to the park than sit and talk to yet another doctor in yet another hospital.

We didn’t have to wait too long and we were quickly ushered into a room with Dr Hill and a member of her team. Unlike many of the other medics we’d already seen, there was no sense of there being a time limit and I was able to fully explain what had brought us to her door. We went right back to the beginning, looking at every aspect of our 5 year journey so far. She asked probing questions and actually listened to our answers; she examined M; considered his height and weight; looked at the food diary that I’d been faithfully maintaining for months, before finally sitting back in her chair.

Perhaps I’m now adding to the sense of drama, but as I look back at the moment that was about to change all our lives, I can almost taste the palpable tension in the air. You have to remember that by now, every doctor we had seen had diagnosed toddler tummy, had rejected the idea of food allergies and felt that there was nothing wrong with M at all. If I were to discover the words “Munchausen syndrome by proxy” scrawled across M’s medical notes somewhere, I really don’t think it would surprise me.

Dr Hill looked at Mike and me and stated, simply,

“Well, there’s obviously something very wrong with this little chap”.

I could have cried, or possibly kissed her at that point! From that moment on, every difficulty we had faced over the past 5 years faded and we had a sense of purpose and of how to move forward.

Whilst usually favouring an investigative set of scopes initially, as we were already old hands at working within the constraints of a restrictive diet, Dr Hill sent us to the Dietician to discuss starting M on a MEWS diet. This meant that for the next 3 months at very least, M would be Milk, Eggs, Wheat and Soya free and, for good measure, because of my own problems with potatoes, we had to take those out of his diet too. This felt like a daunting task, but I knew I would do anything I needed to to seek a resolution for M’s problems. The dietician was fantastic and spent nearly an hour talking through how I could feed my hungry child whilst excluding all these food groups. Laden down with leaflets galore, the all important follow up appointment for September and several phone numbers to give me access to the help we would need, we left GOSH and headed for a local restaurant to enjoy our last “normal” meal for a long time.

As we sat waiting for lunch to arrive, I phoned my Mum to give her the news. She now says that she could hear the relief in my voice and I’m not surprised. I felt as if a huge burden had been lifted from my shoulders, all because one individual had listened and believed what I had to say about the health of my child. There was no question about our parental instincts, simply affirmation. We were right to have pursued in our goal and though we were still to wait another 18 months to get the final diagnosis, we knew that suddenly the future looked bright.

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One thought on “Reaching London

  1. F.

    I have seen people sidelined by the medical profession before. It’s not that doctors are bad, rather that they cannot tell if you are a paranoid person or a rational one. If your doctor was also your friend, he/ she would have a better idea of how serious things are.

    I had a girlfriend with low iron/exhaustion that was misdiagnosed as ” period problems ” when dogged pursual of the issue finally located the cancer causing her iron levels to drop. Another friend whose pelvis broke in labour, who was labelled as a prima-Donna new mom (she was a jock too!).

    These experiences and yours are perfect examples of how we need to be our own advocates.

    Reply

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