Drugs and Adolescence

Macayla has made it more than 4 weeks without a seizure (that we know of). But she has been very lethargic and sleeps a lot more than normal. We have been cutting out medications that could cause her to be sleepy. We took her off of a seizure medication (Zarontin) that no longer fit her type of seizures. This made her Lamictal levels increase by only a few points, so at first we thought that may make her sleepier. So, we removed her melatonin (natural sleep medication) and that has not helped. We are now trying to cut back on her clonapin which is a anti-anxiety/anticonvulsant to see if that helps. If none of the medication reductions change her energy level and alertness, then it may mean that we have reached that point in the disease where she is simply slowing down. We just want to make sure she is not taking medications that are no longer necessary and that will help her to be less "doped up" and alert as possible. 

Talking to a nurse who works in hospice, I was told that many patients will go through cycles of sleepiness for multiple days followed by a day or so of alertness as they draw closer to becoming vegetative. We don't know if that is the cycle we are beginning or not. EVEN if it is, a vegetative state would still be quite a ways down the road. Another possibility is that Macayla is simply being an adolescent. She is only 7, but she is experiencing some hormonal changes and may need some extra sleep. (Our pediatrician explained that these changes can occur earlier in kids with neuro-problems.) Adolescents tend to sleep in late, so she could be experiencing that hormonal drag of prepubescence. So, maybe we simply have sleepy-headed pre-teen in the house! Drugs and adolescence can be such a drag!