I haven't updated this in a while mostly because I don't have a lot of good things to say. The past 6 weeks have been really rough on all of us. Seizures are completely out of control and our options are slim. She has anywhere from 8-12 clusters of strong spasms that usually last 10-15 min each, sometimes longer. Most of these clusters occur at night so she never gets rest which triggers more during the day. We have cancelled therapy at least once a week and have given her rescue meds on a regular basis to just let her get some rest. We haven't seen this much activity since this all started. The most frustrating thing about it all is that this new activity did not show up on her most recent EEG. Our neurologist was actually pleased with the results from the study. We told him that although they did not show up they are in fact seizures. We have seen enough seizures to know that they are. He said it was most likely random body movements due to a poor nervous system. We disagree completely and have told him numerous times that something needs to be done. We have researched and suggested that these may be deep brain seizures that a regular EEG can't read. He agreed that it is possible but we would have to do a specialized test to confirm. The only place in Tennessee that has that machine is Memphis and he has connections there. We told him to try and get us an appointment ASAP. It really concerns me that we have to be this persistent just to get suggestions from our doctor. We feel like we are the doctors and really wish we had more support. I worry about other families who don't have the resources or personalities to question the doctor when it's needed. We really feel like a bigger city would be more beneficial for her needs but moving again is not something we want to think about.
The amount of seizure activity she has experience in the last two months has really taken a toll on her. She is tired, irritable and "out of it" all day. She never feels like doing anything and we haven't been going out a lot except for outside our house. Her seizures are so strong and violent that she needs to be in a place where we can lay her down. It's almost impossible to hold her while she is seizing. Her arms stiffen and slam on the ground so now we worry about her hurting herself. We both have taken some punches in the face. Not all of her episodes are this bad but about half of her daily clusters are.
She has regressed with most of the skills she was working on and isn't able to learn a lot of new things. She does have a couple hours a day where she is alert and plays but it's just not the same as it was a few months ago before this got bad. She just wants to sleep all day long.
The stress of all of this is hard for us but we are actually able to manage it better than we expected. Although Justin did get shingles a few weeks ago! The doctor asked him if he had a lot of stress at home...yeah just a little. He is fine and probably not happy I shared that with everyone. He is training for a big triathlon in the fall so that helps keep his mind off things. I went out of town last weekend for a bachelorette party and it was so fun! It was nice to have a break and hang out with friends. We will be celebrating our 3rd anniversary on the 29th and hopefully we can do something fun.
I will try to end on a positive note. We should be getting Piper's gait trainer soon and it will be fun to use at home. She spent 30 min in at PT last week and I think if we practice more she will get the hang of it.