February 18, 2010
Caring for a young woman with no formal communication skills and minimal alternative ability to express her feelings, wants, or problems is incredibly frustrating. It is probably the hardest when it is obvious that something is bothering her. You are clueless on what it is. Your child is unhappy and you cannot help her. You try. You study her environment, the people interacting with her, and you look in her eyes to see if pain lurks there. And, at some point, you get annoyed at her and then feel guilty. You get discouraged about working so hard to take care of her yet apparently failing. And, you get depressed. Her mood, in essence, becomes yours.
I have been going through that in the last few months with Lauren. Lauren had gotten increasingly irritable and unhappy. She was definitely not her usual happy self. It was hard to figure out what activity would make her happy...or at least content. Did she want to watch TV, listen to her mp3, listen to a CD??? We were constantly changing what she was doing to try and please her and that task was getting increasingly unsuccessful. This just wasn’t Lauren’s usual personality. If anything, she had always been a bit too passive.
Lauren takes two medications for seizures. Six months ago we switched to all extended release and she can now take them all at once instead of spread out over the day. This has been great because the one meal of the day that she rarely gives me any problem with is breakfast. So that’s when she takes the medication. If she’s had a seizure or isn’t feeling well for some reason she may refuse to eat her meal or snack, but that usually occurs later in the day for some reason. It was always a battle to get meds into her when she simply wouldn’t eat yet had to take that medication. The switch has gone well and she adjusted seamlessly. We do twice yearly blood work to check on the levels and effects of the seizures meds. The last blood work showed a high level of one of the meds. Follow up blood work confirmed that the level was too high. In discussion with her neurologist I learned that the extended release version of the drug may result in a higher blood level on the same dosage. So we decreased her dosage last week.
What a difference a week makes! Eureka, Lauren is happy again. Lauren has stopped her growling and complaining that was clearing the aisle of small children at the grocery store. At mass on Sunday – instead of having to take a walk outside because of her discontented vocalizations, we had to take a walk outside because she was laughing so much. I hope that Lauren continues in this gleeful disposition. She has to be enjoying life a lot more without whatever the effect the med was having that was making her so miserable. If she could only have told me...but, of course, if I only had a dollar for all the times I’ve said that. But, how I wish I could have spared both of us the aggravation and distress of the last few months. I hope that the decrease doesn’t affect her seizure control, tenuous as it is, but so far, so good. When Lauren was out shopping this week, a toddler reacted to Lauren’s tuneful humming by starting to dance in front of her. I guess she really can communicate!