Nearly forgot!!!

Oops, nearly forgot to include the other FABULOUS thing!!!

We recently discovered that - on top of Alyssa's low muscle tone - she is struggling with her hand grip strength. Now although I always knew that, I hadn't realised that it is affecting her physically at nursery (and therefore will do if she goes to school this year). We had a few discussions about the OT coming to nursery weekly and assessing what writing tools would make things a bit easier for her to use. But we also discussed the splints that Alyssa wears at night-time (to stop her tearing her skin off and causing friction burns to various parts of her body). I had previously worried that - eventually - they would start to cause muscle wastage or affect her arm/hand strength and it appeared we were now at that point. We had already had many discussions about alternative products / methods which would help stop her from scratching and tearing at herself, while still allowing her freedom to use her arms. And come up with nothing.

Because it was now clear that - yet again - we were fixing one problem, and causing another one (as always appears to be the case with Alyssa), we started hunting once again for something to help our situation. And the OT came up with "Scratchsleeves"

Scratchsleeves is a specially designed garment which looks like a shrug, but it is made of smooth cotton, with silk-ended mitts (fully attached to the garment). It was originally designed for babies with severe eczema and who also tear at themselves, causing severe skin damage. The inner part of the mitt is cotton, but the outer layer is silk so the end result means that even though baby (or in this case, Alyssa!) is scratching from the inside, the silk layer glides over the top of the inner cotton layer so there is no "friction" like there is with regular mitts or socks on. And they would mean that - assuming she couldn't get them off - we would be able to get rid of the splints. So we put them to the test!

And 2 weeks later, we're LOVING them! :-D She can still strip her bottom layers of pyjamas/silk garments off and "scratch" her thighs, but there has been no friction burns since she started wearing them (and there were still friction burns when she had splints on because she could reach her legs, even though she couldn't reach other parts of her body), and she has been wearing them under her pyjama top so she can't get them off. Obviously that's partly because of her low muscle tone and poor grip strength and once we start working on building those, that will probably be an issue again ... but so far, they're wonderful! We have removed the splints and will start working on strengthening those areas over the next few months!

I'll admit that I was absolutely terrified of what would happen when I removed the splints (even though I desperately wanted to!), because she has ONLY been wound-free since we started using them (well, only in the last 5 months of wearing them for almost 18 as she was still attacking herself during the day!) but she WAS still managing to cause friction burns. And I was really paranoid the first night we trialled them, and had my eyes glued to the monitor! But I've calmed down now and am enjoying marvelling at seeing her sleeping with her arms in so many different positions! It looks so strange! And just shows how quickly something becomes "normal" in your eyes, when it's so bizarre to everyone else.

I am already planning ahead for when she is able to get the Scratchsleeves off, and plan to ask the makers of Scratchsleeves if they could design something for older children so we avoid that problem. Clearly no amount of medication is ever going to control this itching sensation she has. I also have friends with children in the same situation, those who feel no pain but feel itch ... and cause horrendous wounds. But they are all much older than Alyssa and can dress and undress themselves, so they would be able to get them off.