Attempting to get the word out about ONH/SOD and currently getting ready for the 16th Annual Stroll For Strong and 5K Event and the MAGIC Foundations Annual Convention in July!!!
Cameron
at the MAGIC Foundation Convention 2011
Wednesday, April 18, 2012
We are battling again :-(
The last few weeks have been a bit difficult for Cameron. He began having an increase in the frequencies of his seizures so we followed with our usual increase in meds. Normally he takes a couple of days to adjust but this time it hasn't been so easy. He now battles with lethargy and an inability to stay on his feet for any length of time in the mornings. It has gotten so bad that I've had to pull him from school until we figure out what's going on as it's just too unsafe for him. He will wake up at 7am and by 8 he's asking to go back to bed. Most every morning these last 2 weeks he's taken 2 naps before noon. Also, last Saturday, he woke up with a stutter that has progressively gotten more severe with every passing day. In a recent discussion with a neurologist I've decided to break his dose up or 3 times a day instead of 2 in hopes that the smaller dose of meds in the morning (which is the same dose he was on before the increase) would allow him to gain some stability and be less tired. But hat hasn't proved to be the case. So off for blood work we went last night. And the lab screwed up the tests so results I should've had his morning, I now can't get until tomorrow. I just don't know what to do for him. What if all his med levels are within normal range? What then? What could be the cause for all these sudden changes? I have to believe that it is meds simply because by 4pm, he's back to being as close to normal as possible for Cam. I'm beginning to wonder if I need to request that another long term monitoring study be done; however, that would require another solid week in the hospital. But I don't know what else to do. He can't continue to live like this. He can't go to school. *sigh* well, I guess we'll wait to see how his tests come back in the morning.
On another note, I have a child psychologist/behavioral therapist coming out to the house tomorrow night! I am so excited for this visit. I am so frustrated with the anger issues Cameron seems to have. And am at wits end with how to deal with it. I cannot wait to learn some new tips and tricks!!
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