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.
Jean
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
10 comments:
So....you can write your own paper and have it published in both "Epilepsia" and the "Journal of Endocrinology." You will be so sought after to speak and educate others, your head will spin!
and, Jean, sorry I missed your birthday! I told Luther to remind me, and he forgot!
p.
You know, I wonder how many people are out there with seizures and Addison's, or if I'm just writing this for myself. But I figure this information will help someone someday.
Don't worry about forgetting my birthday...I have 364 unbirthdays we can celebrate! ;-)
Jean - I will be interested in your findings, we dont have the seizure piece but i do see ups and downs with Zac - he'll be 11 in June, is it puberty? he's also now developing a real issue with anxiety.
Barbara
Hi Barbara:
I have thought about the possibility of pre-pubertal (is that a word?) cycling...but she's only 7!! But I also know that kids with brain injuries or other disabilities sometimes go into puberty early. So, yeah, I'm thinking about that.
As far as Zac's anxiety--have you had his thyroid checked? It is common for Addisonians to also have thyroid problems, which can manifest as anxiety. Dusty's blog has alot of info on that: http://www.addisonssupport.com/.
I'll pray that you find the solution fast!
Something else you referred to in that manual sounded as though Annie's adrenal function has its own ups and downs. You may have been hinting at that, but I didn't see it exactly, so am 'clarifying' -
If it does, then why doesn't Jesus just up and fix it so that it's ALWAYS working?
Oh, you already asked that, huh?
Love
Yeah, already have asked. Over and over and over and over...and will continue to do so until she is healed either here or in heaven!
Barbara--I also thought while I was driving around today--maybe Zac needs more hydro, because sometimes anxiety is related to low cortisol. ??
Jeanne,
Zac does have hypothroidism and takes levothyroxine, this diagnosis came 2 weeks before the adissonian crisis. The anxiety was at it's worst a few weeks ago, he had to have 2 teeth pulled, we did the gas method, did it 2 years prior and it was good for him. well not this time, he was out of his skin before they even started. On the advice of his endo we had given him 10x his regular dose that day. He's been seeing a therapist for a few months now, he's becoming more aware of his condition and has a lot of fears related to having a chronic illness, it's heartbreaking to think that he's a 10 year old boy with a chronic illness. There are many facets to it, one being, he doesn't look sick, so kids/people don't get it. He's in 5th grade now, new school this year lots of changes, lockers, teachers, just a tough year all around.
Barbara
I'm so sorry to hear all that. Zac's going through the mill...I will pray for him & for you. It would be nice if there was a kid's Addisonian website. Hmm...
That little girl, and her six siblings are so incredibly blessed to have you as a mom, Jean.
Praying for Him to heal her, and in the mean time, praying that the cycling will be more evident to you. xxxooo
i love you annie
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