We’ve had a good couple of years with Erin and her hypermobility syndrome. However this week we have been plunged into a bit of a reminder that hypermobility doesn’t go away. Hypermobility Syndrome is more than being a bit bendy. It affects sufferers in lots of different ways but it is still is often misunderstood by professionals and the general population. Another invisible illness that gets little recognition for the misery it can cause and yet we seem to be in A Hypermobility Syndrome Flare Up at Age 7.
Generally we are quite relaxed about it all, but this week has been challenging. Erin was diagnosed when she was four. She didn’t walk until 19 months when she was then diagnosed with hip dysplasia which you can read about in Erin’s back story.
Erin (7) hasn’t been ‘fighting fit’ for the past couple of weeks. It started Bank Holiday weekend with sickness and we believed she had food poisoning as no-one else was ill. It totally wiped her out and lasted until the Monday . She went back to school mid week but was very tired.
However it was a temporary return. The following Tuesday she started vomiting again, it was relentless. At about 7.30 in the morning I noticed a rash had appeared across her face. The rash did not blanche under a glass and although I was not overly worried I knew it needed to be checked by our GP. I wasn’t worried because apart from being sick she was ok in herself. No drowsiness, pain or dislike of lights. Therefore I knew it was a serious medical emergency. We saw the GP mid morning who referred us up to children’s ward at the local hospital. The rash was quite obvious and they needed to follow the meningitis protocol despite Erin seeming fine.
Erin was still being sick at this point and was exhausted. On arrival we were put into a side room because of the sickness. A junior doctor came to do blood tests and I warned them that Erin doesn’t give up her blood easily. This makes the process rather traumatic for all of us. After two attempts the junior gave up and went and got her consultant, who also took two attempts to get the blood.
During the examination Erin’s heart murmur was picked up again. This was first heard when she was about 3, she saw a cardiologist who said it was an innocent murmur and to forget about it. Except apparently she should have outgrown it by now. Therefore we are being referred again as a heart murmur could also be a sign that her mitral valve is floppy. As I said HMS affects you internally as well as those bendy joints.
But back to the rash. The rash was diagnosed as petechiae and was caused by Erin being sick. It was more pronounced because of the hypermobility. Petechiae is a type of bruising and Erin bruises easily because her skin is so fragile.
Erin is also aching more than usual at the moment especially in her legs and hips. All my children regularly pop and clunk and Erin tells me when things move out of place. Therefore it looks like we are heading back to physio for some strengthening exercises. Thankfully I had a really positive chat with her GP yesterday who really listened to what i was saying. He want’s Erin to rest up for a couple of weeks and then he is going to see her and give her a good check over.
I find HMS so frustrating and often feel that we are dismissed and the issues are belittled which I wrote about in explaining the invisible illness. When Erin was 3/4 years old things were bad and it was one of the deciding factors of me leaving teaching. We seem to be back at this point again and I am hoping that someone really listens to us. However I don’t know what can be done or whether attitudes are changing. I won’t let HMS define her or stop her doing anything. It is something we need to learn to live with. But when in a flare up as we seem to be right now it is bloody frustrating.