Keppra didn't last too long until she went into a dark place. Next was trileptal, I think, then ultimately we went on gabapentin. I was pleased because she really didn't have too bad of side effects. Her stomach wasn't getting worse. Her depression was stable... Problem was, she never got better seizure-wise :(. When we got up to 1200 mg twice a day, she started acting high or drunk and her pupils were always dilated. She was very impulsive and tended to hurt her little brother who she had always had a good relationship with before. She would wrestle him and hurt him and then resent that she got in trouble for it. Finally when her seizures were coming in clusters after several months, I asked for a change. More on this later in this post.
In May she was diagnosed with Ehlers Danlos Syndrome. I already knew she had it.
We have been seeing a gynecological pain specialist who put her on norethindrone and had her do pelvic floor physical therapy and myofascial release. These things did help! Unfortunately the summer came to an end and she decided to give public high school a try. This meant not seeing doctors all the time or doing PT.
School went really well for the first 4 weeks, then the school decided she didn't need the helps they were giving her. Everything went downhill from there. She was overwhelmed in that setting, having a lot of pain and fatigue and feeling like she was not getting the support she needed. Finally it came to a head and she said she wasn't going back :(. She ended up staying in choir, textiles and foods, which she enjoyed and is now trying to decide between homeschooling the rest of her senior year or trying to take the GED. She went to another neuropsychologist and got tested again. These results were hard to swallow. I'm not sure what they really mean, but they seem to not be good.
Pumpkin has started weaning off the gabapentin and switching to phenytoin October 24. At the same time, she started not being able to eat enough and having more stomach pains. Ultimately she ended up in the hospital this week due to losing too much weight and not figuring things out as an outpatient. She had an MRE in the hospital which showed some swelling around the rectum. The GI team is taking her off her 6MP to see what happens. They also put her on an NG tube to help get some nutrition. Right now we are trying to get her up to 90 mL/hr for 14 hours a day. She's been on it constantly though for over 24 hours except when we ran out of formula for about an hour. They want us to be able to insert an NG tube ourselves as a goal to go home to.
