Physio review

Laura sees a physiotherapist once a year and to be honest she's never really listened to my concerns or done much for Laura except order more piedro boots. Anyway her old physio has retired (hooray!) and so we have a new one. She came to Laura's school today to see her and she was brilliant.

She spent an hour with Laura, stripped her down to her nappy and watched her at length. This has never been done before. Mostly there's a cursory look at her walking and checking her piedro boots, that's it, 5-10 minutes and it's done.

We talked at length about the issues that many older Dravet kids have with ankle pronation and scoliosis, and I also told her about Laura's history of right sided seizures/left sided brain damage, and also prolonged Todd's paralysis (in 2006 she was paralysed down her right side for 4 days following a status sz and they thought she'd had a stroke).

Anyway, she can see a very definite right sided weakness that is manifesting in Laura's posture and walking. She agrees with me that Laura toe walks for stability not because of a sensory need/issue. She toe walks more on her right foot because of her weakness on that side. She also pronates on her right side when her feet are flat and her hips and trunk are twisted when she stands. Whilst she has no signs of scoliosis, she can see definite muscle weakness on the right side of her trunk from her shoulders down to her hips. When she walks she can see irregular movement from her hips and knees, probably due to the weakness.

She is writing to the orthopaedic surgeon who we also see annually (later this month coincidently) and is suggesting Laura has some baseline x-rays of her hips and spine. She also feels Laura needs more supportive seating. We have been asking our OT for a chair for home (mainly for when she has the feeding pump attached). The physio feels that the x:Panda hi low chair would be a good choice which is good as I liked the Panda Futura when I saw it at a recent exhibition and they are very similar.

She is also writing to wheelchair services about Laura's Convaid Cruiser Safari tilt stroller as she feels she needs some posture support in it.

Whilst this is not good news I feel so relieved that her needs are now being fully assessed and at last some of my concerns are being validated and properly investigated. I feel that because Laura is one of the more able physically at her school her PT needs often get overlooked.