Lucy's Story

In August 2013 my little girl, Lucy, woke up with a bad neck. A visit to the GP didn't really help, he thought maybe tonsillitis but she wouldn't open her mouth far enough for him to see inside. I wasn't happy and took her to A&E. We were told she had torticollis (bent neck) and that it would likely correct itself within 48 hours. It didn't and my little girl was finding it difficult to eat or drink. A CT scan was done one her brain, but that came back ok. A couple of days later a CT scan of her neck revealed a rotated bone at the top of her spine. In medical terms, a subluxation of the atlanto occipital joint.

Now, I tried to Google this term and all that came up were medical records, difficult to understand and some quite scary. I figured that the condition might be quite rare, and apparently it is, but it does happen and it's quite scary when you can't find anything that can offer advice or help. This is why I have set up this blog. Hopefully, the next time someone searches for subluxation of the atlanto occipital joint, or even atlanto axial joint, or even C1, then maybe they will find some support in my words and the story of my little girl.

Another reason I have set up this blog is to raise awareness of Hypermobility Syndrome, because I am certain that this is why my daughter had the subluxation. I'm still travelling this journey so I want to share my story as I go and maybe help or inform others of our experiences along the way.

Lucy was first diagnosed as hypermobile when she was six years old. She'd been having pain in her knees and I'd asked the GP to investigate. He sent her to the hospital for x-rays but nothing showed. They did point out that she was hypermobile. Shortly afterwards I was having her assessed for Autism as her teacher suspected that she might be on the spectrum. I did too, but I'd kept it to myself until it was noticeable by others. As part of her assessment she was seen by a physio therapist who diagnosed her as hypermobile. She was also diagnosed as high functioning autistic, but I'll talk more about that later.

Now, being hypermobile is quite common, most people know the condition as being double jointed. However, when the hypermobile joints cause you pain and discomfort then it's known as hypermobility syndrome. The assessment is based on the history of the patient and their score on two charts known as the Beighton score chart and the Brighton Criteria 

Lucy scores 9 on the Beighton score chart. She's not been medically assessed yet on the Brighton Criteria, but seeing as she currently has a subluxation of a joint and has suffered chronic pain for years now, then it's likely that she would get a diagnosis of Hypermobility Syndrome. 

When it was first discovered that Lucy had a subluxations of cervical joint the consultant was convinced that she had had a fall. I know that she didn't (not even at school because it happened during the holidays). She woke up with condition which is very unusual. It's also scary because it means it could happen again.

In my next post I will write about what happened when Lucy was admitted to hospital and how her treatment has progressed.