The Importance of Being On Top of Things (And the Power of the Internet)

I now have to relate a story that has got Marion & I pretty damned wound up with the specialists in Nijmegen. In short, we feel that they have not been paying adequate attention to Kay’s treatment and could have prevented the onset of these epileptic episodes.

A week last Friday, 30th Oct, we had a very bad night with Kay. She was screaming with tummy cramps all night. Now, it is true that vincristine, one of the primary chemo drugs, causes constipation and cramps. In the days previous to the 30th, Kay had been suffering tummy cramp which had been diagnosed as constipation. But this was a little strange since she hadn’t eaten anything for 5 days or so. Still, we followed instructions and dosed her with laxative until on Friday evening we were instructed to give a double dose of laxative. On Saturday she came down with a fever and was admitted to the Catherina and the subject of her tummy cramp became peripheral. However, the pain continued and we continued to find it disproportionate. We constantly raised the subject, peripherally, and we were constantly told that it was constipation. Half a dozen doctors examined her, could find no sign of anything in her intestinal tract but continued to pronounce constipation. They also said that there’s not much that can be done to relieve tummy cramps and prescribed paracetamol as the best medicine.

But our concerns grew. The pain that Kay was suffering was difficult for us to bare, never mind Kay. But of course, that’s what makes us a biased and unreliable party, theoretically unable and untrained to make professional judgement calls. Since her re-admission on Thursday we have been pushing the subject of her tummy cramp harder, since if that could be solved Kay would be able to sleep, we would be able to sleep and everyone would be far better off.

On Saturday the specialists in Nijmegen told us that Kay’s epileptic attacks were probably caused by vincristine toxicity resulting from the use of itraconasol. The itraconasol has been stopped and so Kay’s condition is starting to improve. But on Saturday night and all day Sunday she was in extreme pain from the cramps, unable to sleep for more than about 30 mins at a time and very upset and scared from the pain and the epileptic attacks. So yesterday Marion exercised parent power and demanded that something be done. And now she is being given a different pain killer that has reduced the effect of the cramps dramatically. Last night she slept for 4.5 hrs non-stop, the first time for more than 10 days.

Last night I decided to look into the subject of itraconasol toxicity and came across a very interesting paper from the Journal of Paediatric Oncology, see: http://journals.lww.com/jpho-online/Abstract/2005/07000/Itraconazole_Related_Increased_Vincristine.10.aspx for the abstract, if anyone is interested. Now on reading this article I discovered that the primary symptoms of this toxicity include: the normal vincristine abdominal cramps and constipation, but then greatly magnified by toxicity induced by the itraconasol. In other words Kay has been suffering the preliminary effects of itraconasol toxicity for probably 10 days, meaning that if someone had taken Marion & I seriously and looked into the cramps earlier the toxicity build-up leading to the brain damage and epilepsy could have been avoided. This could have been determined by a relatively simple test to look at vincristine toxicity in her blood.

I have to say that we are pretty unhappy by this lapse on behalf of the specialists. There’s more to the situation than I have written here and of course, as I expect the doctors to use as an excuse, we’re not dealing with exact science. But on other hand we’re supposed to be in the hands of the top professionals and they should be able to think of things like itraconasol toxicity.

I have put my concerns to the duty doctor today, rather pointedly. I have been told that the top man, The Professor, will drop by later today, I assume to correct my layman’s understanding of the situation. I suppose that parents who go around downloading papers from medical journal websites must a bane in the life of the professional medic. I said so much to the duty doctor, who replied: “But you have to pay for those papers, don’t you?”. To which my response was, “What’s $40,- compared to understanding in detail what is going on with my daughter?”.

I sometimes wonder about people...