One of the reasons I blog is so that anyone who has a kid with Addison's, or a seizure disorder, or a brain injury, or blond hair and blue eyes--can read about our struggles, compare their situation to ours and hopefully get some helpful information. With that in mind, let me share another update:
Yesterday Annie had only two detectable seizures--a huge improvement from the day before. But she was still on the brink of vomiting all day, and in fact, threw up twice. Because she had no other symptoms (like a fever, cold, etc.) to make me think she needed more hydrocortisone--the medicine for her Addison's--I thought that the nausea was caused by Banzel, the new medicine for her seizures.
And more background--the last few days she's been getting up around 4 AM gagging herself. So every morning with her regular medicines and regular dose of hydrocortisone, we had been treating her with Zofran (an anti-nausea drug). But, in the last few days, even Zofran hasn't worked to keep her nausea at bay.
Now, for those of you with Addison's, you know that sometimes when you're low on hydrocortisone, you need more so you can sleep better. It's counterintuitive, because for the rest of us, steroids can keep us up all night. But for people with Addison's, the right dose of the steroid hydrocortisone can actually help them sleep. So, last night, I thought, I'll give her a little more hydrocortisone at bedtime, and see if it helps her not wake up at 4 AM, gagging herself. Voila--here it is 7 AM, and she's still asleep.
Now although I have no idea why she might need more hydrocortisone, because, again, she has no outward symptoms of illness, I'm going to give her double dose today and see if: a. It helps her stop being so nauseated and gaggy, and b. Helps eliminate any seizure activity.
Thanks again for checking in with us this morning, and again, thanks to those of you who pray for us. It helps so much.
Jean
Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way I should go, for to you I lift up my soul. Psalm 143:8
4 comments:
Lord, cover them with your grace and mercy and heal Annie's brain, I pray. In Jesus' name. Amen.
Jean
I wish with the Addisons, we had a meter that we could use to check to see if our kids need more hydrocortisone.
Barbara Saunders
Thank you, Gretchen. :)
I agree, Barbara--I wish there was a way to clearly see what is going on with their adrenal system, and when we need to get more hydro on board. Someone needs to invent that meter!
Thanks for the updates, Jean. Whew, how frustrating this must be for you always playing a "guessing game" as to what Annie needs. I am praying.
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