Saturday, April 24, 2010
The myth of the perfect hydrocortisone dose
If you've followed this blog for any length of time, you know that I occasionally whine about not knowing how much hydrocortisone to give Annie for her Addison's Disease. I pretty much wonder about it about three times a day--morning, noon and night, corresponding to the times that I give it to her.
To illustrate, Annie had about 2 low weeks this month, of just not being herself, without any other symptoms. No fever, cold, nothing obvious. But she was just low, and needed extra hydrocortisone in order to 1. not feel nauseous, and 2. not look exhausted. So for about 2 weeks, I gave her double dose.
Last week, the day after her pediatrician and I discussed the possibility of her needing a permanent "bigger" dose, Annie went from "low" to "high"...needing her regular dose and not a milligram more. Again--no rhyme or reason that I could discern.
Also, something that I learned from the "Addison's Owner's Manual": http://www.addisons.org.uk/info/manual/page1.html., that I wasn't clear on is that people with Addison's can have different amounts of adrenal function, thus requiring different amounts of steroid supplement. It's not an "all" or "nothing" disease. What this means is that a child of Annie's height and weight can require one dose, and another child with the same height and weight can require a different dose, because they have either more or less residual adrenal function than Annie. Something new I learned from that manual.
Something else I read in that Owner's Manual is that seizure medicine can affect the way people metabolize the hydrocortisone. In three years, I had never read that anywhere, although I had always suspected it. And in Annie's case, with three different seizure medicines for her Lennox-Gastaut seizure disorder, this news was very helpful for me to understand how her medicines may interact with one another. Interestingly, in the few weeks that I've been more relaxed about giving her what she needs based on her signs, she's had very few seizures.
So what I'm going to track now is her low weeks and her high weeks, and see if there's a cycle or pattern that emerges. I'll let you know what I find.
Lead me in Your truth and teach me, for You are the God of my salvation; on You I wait all the day. Psalm 25:5