Friday, 5 August 2011

#Specialsaturday post - Meds Changes & getting my Daughter back

Chrissy’s doctors decided that Topiramate would be the first drug to be reviewed as it can worsen behaviour problems. It’s an anti-epilepsy drug, & was introduced several years ago to augment Epilim as Chrissy’s platelet count had dipped again - thought to be the result of her blood/Epilim levels being too high.

Back then, her neurologist said that Topiramate could cause cognitive side effects in some people, which is a particular concern in someone with learning disabilities.
However, seizure control improved & Chrissy’s platelets rose to normal levels with the lower Epilim dose. Side effects of Topiramate were subtle – Chrissy’s word-finding abilities faltered and her vocabulary shrank. The neurologist told us that these side-effects would probably be temporary and, over time, they did seem less obvious. Now though that Topiramate has been reduced it’s clear that the cognitive deficits were bigger than we’d thought.

More recently, since the Topiramate dose has been reduced by more than a third, Chrissy’s nurses and I have noticed that her vocabulary has expanded. she comes out with longer sentences and speaks more fluently. Last week she amazed me by saying ‘violin’ when she spotted a photo in the newspaper of a girl playing the instrument – I didn’t realise she knew what a violin was! On the way home, we got stuck in slow traffic. Chrissy said ‘We can’t move the trolley, can we mummy?’ then roared with laughter along with me as she realised she’d chosen an incongruous word.

This week Chrissy has been much more settled - it could be due to the meds changes or just one of her flukey 'perfect' days. She didn't wake us during the night and the two outbursts she had were short-lived and less intense than usual. (It's worth noting that the second outburst came out of the blue about 30 mins after being given her morning meds) She occupied herself for short spells & was more interested in what was going on around her. In the evening she came up to me & signed sleep, saying 'It's nearly time for Chrissy to go to bed.' This morning she got into bed with me for the best cuddle ever. She wrapped her arm around me & snuggled up to my back, then stayed perfectly still as we dozed off for about 30 mins. She also appears to have lost a bit of weight as her trousers were looser.

It’s early days but things are looking up. Am I finally starting to get my daughter back?

Pics - Chrissy quietly occupying herself (something she hasn't done for some time) & enjoying my new favourite homemade dessert - white chocolate mousse cake.

This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the globe.

Please join the cause by joining the facebook page -
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog -


  1. What a beautiful girl you have! That picture at the top of the page is really lovely. Thanks for sharing your story.

  2. Thank you for your lovely comment :-)

  3. Wishing you luck finding the right combination of meds that work for Chrissy and you. Xx

  4. Thanks LittleMamma. Taking a long time but hopefully we'll get there eventually xx