Laura's had a good week with no obvious seizures. We're almost 2 weeks into the Epilim wean and no real problems so far. She is a little more grizzly at times but I guess that is to be expected as Epilim is also a mood stabiliser. The main thing is she's had no breakthrough seizures. We've increased her clobazam and she is a little more unsteady on her feet because of that. Next week we reduce her Epilim by another 2.5ml and then she will just be taking 5ml a day which is the least she's ever taken. A little scary but exciting too as she may benefit developmentally by being off this medication. Fingers and toes crossed!
Laura's been at Rainbows for three nights this week and has enjoyed herself. She had a great time in the jacuzzi today, the first time she has been in it as it is often out of use when she has been there before. She's been sleeping well there which doesn't always happen so that is good to hear.
Mick and I have had a lovely couple of days in Norfolk with the dogs. I was a bit worried about taking the dogs but the hotel (the Lifeboat at Thornham) is very dog friendly. We had some lovely long walks on the beach while we were there although it was VERY bracing weather!!!
Saturday, 23 February 2008
Friday, 15 February 2008
A very busy week!
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.
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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