After the darkest hour comes the dawn….
Yesterday was an extraordinary day. I started with the emotions of my previous post and finished with a whole lot of new knowledge and support that has filled me with hope again.
I’m going to try to explain the theory but please bear with me as it’s all very new to me and I’m just getting my head around it but want to share it with those of you who need information asap.
Please remember I am not a doctor, in fact have no scientific qualifications beyond Year 12 Human Biology where my favourite chapter was the one on evolution because that was like History!
Ok here goes. As I understand it the theory is that:
a) the underlying genetic predisposition is ‘lax’ (I think that’s the right word) collagen
b) my daughter IS possibly hypermobile (pauciarticular which just means one joint as far as I can gather?)
c) her rapid growth spurt…probably combined with an increased swimming load…was the trauma that triggered the lax collagen to become an issue
d) the issue is something to do with there not being enough room in the thoracic cervical spinal canal for the nerves to operate properly. This triggers the ANS dysfunction.
The physiotherapist demonstrated the problem in my daughter by
– raising her legs one at a time when she was lying flat. Her right leg reached 45 degrees, her left 35 degrees. He then had someone hold her head so that her neck was relaxed then move it towards her chest so it was in flexion. It opens the spinal canal to allow more room. At this point he raised her legs again and they moved to about 70 degrees. (Please be very careful if you try this at home, my description is not technically accurate)
So, as I understand it the plan is to exercise WITH THE NECK IN FLEXION (or however it’s properly phrased!) The aim is to retrain the system. He uses pilates techniques. I don’t think it will cure her but it should allow her to get stronger and start exercising again.
Sorry for my very laywoman description. I will try to improve this post when I get my head around it better. I just thought you’d like to know about it sooner rather than later. The physiotherapist says the problem is this simple and there is too little funding for research/education because no drug company benefits!?!
We are seeing him again today so that he can see the impact of what our girl did yesterday and set up a program. It’s nice to have some practical support and A PLAN! Some of you will know how long I’ve been looking for a very basic careful exercise plan for our girl that takes this condition, whatever it is, into account. This may be it!
So, what do you think? Did you know this already? Do you think it is only part of the problem or the cause? Does the theory make sense for your child or for you? In adults the trauma trigger could be many things…although I don’t get how a viral trigger would impact on the spinal canal? Anyhow here it is, we’re going to run with it for now!
Oh and I just wanted to say to all the lovely people who have contacted me online or otherwise this week and offered words of kindness, thank you. It means so much.
Smiling and waving again!