Friday, 20 August 2010


For one reason or another, a few months have passed since we last saw Hope's lovely consultant Ravi. She's meant to be a 6 weeker to this particular clinic .

If you've read other posts, you'll know this doctor is a very significant person in our lives; he's such a kind doctor, but has given us bad news more times than he or I care for. In some of our bleaker times, he'd call to see how Hope was. He's also given me too much food for thought, and my head and heart wrestle continuously with the whole biopsies - to test or not to test battle. His thinking was along the lines of forewarned is forearmed (possibly, but the findings may not be conclusive still). My train of thought being I couldn't bare to know. Ignorance is bliss. I often lay at night with her wondering how long ...

Hope was on top form today, and Ravi could see she'd grown. He was pleased with how well she was supporting her head now, and she showed off with her babbling. I told her that she's a lil roller now, and he asked if she might show him, and she was pleased to have the opportunity to perform one of her favourite pastimes.

After this, Ravi picked her up and fussed and kissed her as he usually does, and told me how great she's doing.

As usual, I presented him With a host of questions ; my first about checking lactate levels, kidney function etc (these are done routinely for Hope). He said he wouldn't bother this time as it's clear to see how well she is :9)

We discussed her vigabatrin doses and her fleeting seizures. I questioned whether her recent thrush is an indicator of an imbalance , but he thinks not. I asked to be prescribed a rescue remedy med to treat her epilepsy in an emergency, he agreed this was a sensible thing to do now. But since pharmacies won't hand this out, and I need a lesson in it, we'll have another appointment soon to go over this.

He's also prescribed a laxative for her chronic constipation, but after finding out more about 'lactalose', I think it may not be ideal since it works in a way which draws fluid from the body, and requires a good intake of fluids, however, I already have issues keeping her hydrated. We'll see how it goes.

For a change, I bought up the biopsies... I suppose I know eventually
I'll have to agree... Maybe it was time to start the ball rolling... Much to my amazement, he said he really doesn't think there's a need right now. Obviously we know there's something majorly wrong, but things don't seem to be going downhill at the moment. And Ravi spoke of new techniques and tests that are being developed and researched all the time, and that the knowledge is growing rapidly, so in time, conclusions may be reached on the blood and csf in labs.

He said he'd see her in 3 months.

I could have skipped out of there :0D