I talked to Levi's neurologist today and since there have been no obvious seizures we will begin giving him lower doses of the steroids starting tomorrow! I'm very excited about this for several reasons. First, I hate pumping chemicals into my children. Second, hopefully his night time raging will come to an end and we will ALL sleep better. But there is one more little benefit that will come from this.... by "little" benefit I mean hopefully he'll get little again! I'm pretty sure I've already shared that the steroids make him absolutely ravenous. After he's finished an adult-sized meal, he still wants more!! So, to say the least, he's gained a little weight. Most of it is water weight from the steroids, but the kid is HUGE. His belly is so big that his belly button is COMPLETELY out. COMPLETELY. It's so big that Jeremiah was actually worried something was wrong with him. His face has chubbed up so much that he can't open his mouth as wide as normal. His lips are swelling too and are almost constantly pursed because everything is so swollen. I'm pretty sure he's gained three to five pounds in the two weeks that he's been on the juice. So, the hope is that he will start to lose some of that water weight as we reduce his medication.
The scary part of it is that he could start having seizures again once we lower the dosage and we'd have to raise it back up. So, please be praying for no seizures!!
We have our follow up appointment next Friday and he'll have to have another EEG. So, I'm going to buzz his head. I'm not a fan of the buzzhead look on little guys, but it will make it easier on him in the long run so that's what we're going to do. The appointment should only take one day, but if he keeps having the night terrors (which could be a side-effect of the steroids or signs of seizures) after we lower the steroid dose, they might want to keep him overnight. But, even then it would probably be just one night so I can't complain about that!
Well, there you go! That's the news!
Here are Levi's before and after pictures. Enjoy the chubbiness!
BEFORE
AFTER
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