Thursday, 3 December 2015

Two Years Ago

It's strange when you look back at the things that have happened and review them with the knowledge you have now.

This time two years ago Lucy was in hospital having had a manipulation of her cervical spine and a halo fitted for the first time.

We had no idea what to expect and that is why I set up this blog, so we could record the journey and hopefully let others know what to expect if they found themselves in a similar situation.

In August of 2013 Lucy woke up one morning with a sore throat. I took her to the GP who gave her some anti-biotics. The next morning she woke up with a twisted neck. I took her to the GP who said she had tonsillitis. I wasn't happy so later that day I took her to A&E where I was told she had torticollis and it would get better in 48 hours.

It didn't. Two days later I took her back to A&E but they were still insistent that it would get better by itself, although they were a little concerned that she was hypermobile. At this point she'd been given a CT scan on her brain to check for meningitis.

Two days later I took her back to A&E and they gave her scan on her neck where they discovered a rotational subluxation of the atlanto occipital joint. I was told it wasn't much to worry about. I was fed up of being told it was nothing to worry about, I couldn't help being worried, my little girl was a twisted mess of pain and no-one was doing anything to help her!
I was sent to see a consultant. While waiting (4 hours) I was thinking about all that had happened and all that had been said. Over and over I'd been asked if she'd had a fall, if the neck had suffered a trauma. Over and over I said no, because she hadn't and then they'd just walked away uncaring. So I tried something. When I saw the consultant he asked, has she had a fall recently, I replied 'she fell off her scooter last week but I didn't think she was hurt'
She was admitted to hospital straight away.

I didn't lie. she had fallen off her scooter the week before, she was always falling off her scooter. She had bruised her knee quite badly but not hit her head or even her shoulder. I'd been right next to her when she fell. I was sure the fall had not caused her neck and I did tell the consultant that, but the simple fact that she had had a trauma recently completely changed things.

We know now that Lucy has Elhers Danlos Syndrome, she was diagnosed this year. This means that joints can pop out of place without trauma, which is what I believe happened to her neck. However, it's now on her records that it popped out because she fell off her scooter.

I had a long e-mail conversation with an American neurologist. I found his details from trawling medical documents about cervical subluxes. He told me that her sore throat could have been significant. There is a condition called Grisels Syndrome which can cause this type of subluxation in children after a throat infection. It's more common in children with hypermobility, or lax tissues.

So, two years ago today we were in hospital with Lucy recovering and as parents we were beginning a long journey that we had no idea where it would lead.

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