Welcome to Lucy's Page

Just to let you know that a doctor called Moira Blyth came to visit Lucy earlier this week. She is doing research on PKS in the UK, and she has contacted families through Unique. Because of the ethics rules in the UK, she is unable to contact families unless she is giving prior permission through a group such a Unique, but if any UK families want to contact her, she has given permission for me to post her details on here.

Just a rundown of what she did - nothing complicated. She took blood and… Continue

I knew it was all going too well!!! AAARRRGHHHHH!

Lucy went for further tests today as she still has tummy pains, so they are checking for sucrose intolerance too. Unfortunately, as she has already consumed a large quantity of one sick-makingly sugary, syrupy drink that you could stand a spoon up in, there was NO WAY she was going to let another one pass her lips. Nightmare.

We tried EVERYTHING - bribery, threats, and finally, three people holding her down simultaneously whilst trying to force… Continue

Hey Everyone, hope you're all okay? Love hearing all your news about what your kids are up to, and especially seeing their pictures and videos.

As some of you may know, Lucy has had a prolonged history of tummy pains, which has affected her in many ways, but especially her sleep pattern (7 years of sleep disturbance for all of us) and her behaviour (which degenerates when she is feeling particularly unwell.) We have had numerous tests over the years, but the docs didn't consider intolerances be… Continue

I''ve just been to see Lucy in her school nativity where she had a couple of lines to recite as the Angel Gabriel. I know a mother shouldn't brag, but I think she was brilliant, and it made me realise just how much she has come on since she has started school. When the school gave her the part, I was very dubious, as she is still not independent at all at school, and has to be accompanied everywhere, but tonight she went on stage in front of over 200 people and said her lines from memory so that… Continue

YAY! Lucy did her second poo on the toilet. She actually told me she needed to go (rather than it be a by-product of going for a wee), and after she had 'done her business' she said (and this is for you Spesh) 'Did it go to Pooland?'

I know her toileting isn't solved. In the two days since my first blog, Lucy has had 3 wetting accidents, and two soiling accidents (her bowel and bladder regularity obviously isn't a problem), but I am pleased that she understands the sensation of needing to go to… Continue