Rare Disease Day

Things seem to be, ever so slowly, spiralling out of control. Ever since the start of December, my elder daughter (the one diagnosed with IIH) has gradually been getting worse. Two visits to the neurologists since Christmas have seen her medication upped to the maximum dose, which seems to be having little or no effect at all. IMG_0411Days off school seem to be the latest kick in the teeth, and given that she only attends 4 half days a week anyway, missing what little she does normally manage feels like the final insult. Not a day goes by that I don’t see her suffer in some way, shape or form. Last week, her school was having a TD day on the Monday after half term, and so with her sister back to school, I suggested we could go out for the day. She told me she’d like to go for a walk along one of our favourite beaches. FANTASTIC! A day out for me instead of being stuck inside, chained to the computer. But it never materialised. Waking up early on Monday morning, it was clear that her head was bad and that she would be unable to go out. Had it been a school day, she wouldn’t have been able to attend. It breaks my heart, it really does. The same thing happened this morning. With her mother having had a particularly busy week (normally she works bloody hard…this week seems off the scale), again we’d decided a walk on the beach was just what the doctor ordered. But once again she was unwell, and has remained so right throughout the day, pretty much. I know how much she’d like to go out, walk along the beach, chase after her sister, race against the waves, climb and jump all over the rocks, take in all the wonderful sea air. All of which makes things even harder. Reminded all week from social media that today is rare disease day, it’s hard not to spare a thought for others in a similar condition to my daughter. While this post is but a drop in the ocean, if it makes just one more person aware of IIH then I hope it’s been worth it.

Currently, with the medication dosage on maximum, we’re waiting on a cancellation at Southampton hospital for her to have an MRI of her head, a lumbar puncture, and then another MRI, all in the same day. IMG_0525This is to see if the veins in her head are in any way, shape or form, flattened. My understanding is that if they are, there are things they can do about it. But given exactly what she went through last time she had a lumbar puncture (over 10 weeks before she could walk properly, not to mention 2 blood patches) the fact that she’s down to have another, is more than a little worrying. So at the moment, it’s waiting and hoping for the cancellation to come round, and the start of what I’m sure will be a very, very trying day for all concerned.

Your thoughts are much appreciated..........Thanks!