roll call - Hannah Canavan

June 3, 2001

Hi Everyone,

I'm , mum to Hannah (4yo-PMG) and 2 NDA kids - (12), and

Ben (9).

Hannah has many problems (see my signture line) caused by her PMG. She

was diagnosed by MRI scan at 4 months after failing to find a cause for her

seizures with other methods. We have tried many seizure drugs, but the

ketogenic diet has been the best thing ever for her seizures. We are

currently in the very slow process of trying to wean her seizure drugs.

The most recent issues for us have been orthopedic surgery last October,

and respiratory issues now the cold winter is setting in here.

Orthopedically she has not worsened since her surgery to lengthen muscles in

her left leg. She has the classic windswept posture which causes all kinds

of problems, and we need to be very careful to position her so her hips are

well placed to avoid dislocation. This is quite easy if we are diligent in

placing pillows b/n her knees and sitting her with knees well apart. The

therapists at her school want her to begin having time in a standing frame

and on Monday we are going to orthotics dept at hospital to get measured for

AFO's and splints to help her stand. Exciting times ahead as this will

hopefully make a big difference to her bowel function, hip socket

development and overall interaction with her environment.

The cold weather has brought on another bout of snoring and the distress

that goes with not being able to get a decent breath. We are seing a sleep

pediatrician and seh has prescribed a steroid nasal spray, but after a month

we have seen no change. Poor kid has trouble when laying down flat or even

just reclined. As soon as we pick her up it resolves. This makes nights hard

because we cant sleep her upright and we cant hold her up all night.

Humidifier doesn't help either, so we are all stumped at the moment.

Constipation has been an ongoing problem but we now know how to deal

with it and we pick the problem much earlier than we used to, so we now

avoid the vomits and pain and some of the never ending drool.

Well that's it for now. Hope all the other little ones, and not so

little ones, are doing okay.

Love and hugs to you all.

– from Melbourne, Australia; mum to Hannah, (4yo; polymicrogyria,

complex partial epilepsy, ketogenic diet since 6/00 which has reduced

seizures, spastic quad.CP and orthopedic issues that go with it,

non-mobile, cortical vision impairment, possible conductive hearing loss,

swallowing and respiratory issues, non-verbal, global dev. delays,

100% gtube fed by Bard button and a brilliant smile)

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