It's been half term this week and very busy for us all. Laura went to the Bungalow for respite last weekend, and Mick and I had a lovely weekend in London. We watched a show, went on the Eye, down the Thames on a cruise and had a couple of lovely meals out. The weather was gorgeous (for February).
On Tuesday Luara went in to have her Peg changed for a Mic-key. We only got the call on Monday so no time to worry! It all went very well and we were home by 5pm.
On Wednesday we went to see Laura's neurologist. He was really pleased at her good seizure control at the moment (only 1 or 2 szs a month, sometimes less) and agreed to reduce some of her medication as the VNS seems to be working more effectively now. We've opted to try and wean her off Epilim as we suspect that is causing her blood clotting problems. I'm pretty excited about taking her off it because she's been on it since 6 months of age and it may well be doing nothing for her seizures and is posibly holding back her development. So we have started the weaning plan and so far so good. She is a little more cranky but as Epilim is also a mood stabiliser, it's not too surprising it will take some adjustment.
Yesterday, we had an OT review here at home. The OT thought she'd come just to measure for a bath rail as Laura is struggling to get in/out the bath but whilst she was here I collared her about a chair for feeding. We had a lengthy discussion about this and the school's request for a chair for using in the classroom. She was arguing that OT only provide chairs for posture and because Laura can change her own position, she would not qualify on postural grounds - typical case of them trying to get out of providing resources I suspect. I did mention Laura's low tone and risk of scoliosis and she still didn't think this was enough. She was basically against any sort of restraint/containment and felt Laura needed to be free to make her own choices. I told her that this is not practical and safe 24/7 and that at certain times, like for feeding, she needs to be contained for safety and practicality. She did bring up the possibility of using a weighted vest for this type of activity and I wouldn't rule that out. Basically OT think it's all down to behaviour management/training but I think that's a bit of a cop out. I did try and explain that Laura is like a toddler in an 8 year old's body. Anyway I suspect I will have to use some carefully chosen words and put it in writing.
Today we had a lovely afternoon round at a friend's house. Laura was hard work though as she always is when loose in a new open environment. We managed to keep her happy for a short while taking lots of supplies out of their wrappers. She loves wrappers and anything tactile at the moment.
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Hi. Our son is 17 years old, and has the dravet Syndrome. You definitely need to get that OT back and she needs a complete lesson on Dravets, and she needs to understand it has a mutant gene, which is pre programmed to do what is wants, regardless of what your child may look like today. Our son used to be as straight as a ram rod, he could run, climb, feed himself, swing, slide...i first noticed slight curve at age 12. I too, told OT etc my concerns, but they thought they knew best...now our son has severe scoliosis. He is wheelchair bound. He can not even stand. I don't think scoliosis happens in all dravet kids, and possibly its worse in boys, but you can not do enough to help prevent this happening. I wish we knew what we know now. If you would like before and after photos, or a chat, please do not hesitate in asking me. Anyway, all the very best, and you go sort out those OT.s Diane
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