Those bad times seemed to start up again at the beginning of her fourth year in school so she would have been six years old.  Things had been going pretty well and we were even in our very first house.  We were starting to feel like a real family and we were enjoying living in a neighborhood; watching the kids play together while we sat outside talking and laughing with the neighbors. Then her seizures spiked and her behavior went haywire once again.  “Same song, second verse, a little bit louder and a whole lot worse.”  We worked with her doctor and changed her medication for something that was supposed to be “newer” and “better.” I was beginning to dread those words!  Every time we went through a medication change or dosage change it was like that poor little girl was possessed; so here we go again.

Months of wild behavior were simply side effects of the medications to control her seizures and her teachers were smack dab in the middle of it, along with the rest of us. Her little brother was quickly learning that his big sister was different.  He had been through so much with her already and he learned quickly to dodge her arms and legs when she went swinging.  Despite that, he was protective of her and during one of my many angry moments at her, he proceeded to tell me not to yell at her because her “bwain was diffwent.”  Honestly, that boy was only three.

We were all learning to watch what we said around her.  How could she help herself, she was probably being eaten up on the inside. Her teachers were ready at the helm to keep us informed with daily journal entries in her little spiral notebook.  They were diligent in their lookout for seizures and in recording the type of behaviors they were seeing, complete with a sense of humor for all of our sakes. We wrote back and forth in those spiral notebooks often. It was comforting for me to have them to communicate with about my little girl; they understood everything and more. But, even though they ‘understood’ everything, nobody really knew what was going on with my baby girl and even her doctors felt sorry for her. What we did next was to become an important step in the right direction, it was alternative that’s for sure, but nothing else seemed to work with our little girl.

School Journal Entries (Elaine Stephens, Andrea Siebert, Paula Josey, Maggie Grove):

*November 6th, 1998: Well, she was very tired this morning. She’s on a new seizure medication called Topomax-along with everything else. It’s a new drug that’s supposed to be better at controlling her type of seizures. Side effect is drowsiness but I notice that the drowsiness makes her irritable. If this medicine doesn’t work, Lauren could be a candidate for a new implant or surgery or a special diet. Hope you all live through this one! Let me know if you see any changes or any staring.

November 6^th, 1998:  Not as much staring today after she got to school, but they did notice it on the bus.  She has been very impulsive and stubborn, saying “shut up, shut up” and “fa-oo”, and telling us “no kicking” as she’s kicking people.

November 9^th, 1998:  L has had a rough day, lots of trying to bite, hit and pinch herself and she tried to bite Maggie.  Lots of “shut up” and throwing herself on the floor.  She doesn’t seem to be herself today and we noticed a lot of staring off into space.

*November 13th, 1998: We were in Houston and I went to a discussion about Epilepsy. Here is the information about my support group, please hand out to parents that you know. She’s been OK, just having violent eruptions when she’s mad, the medicine makes her drowsy still. 

November 13th, 1998: She was a little scary today and kinda oppositional, lots of shut ups and don’t hit me, etc.

November 18^th, 1998:  L still having problems in PE, maybe over-stimulated or too much freedom, lots of “shut up” and hitting, biting, especially herself and some on Josey. 

November 20^th, 1998:  Very shaky today and also trying to beat me up, pinching, hitting, trying to bite me and lots of yelling “shut up, Ms. Josey”.  I don’t like that new medicine! 

*November 23rd, 1998: Paula, I know what you mean, I guess she has it out for me and you. She’s always hitting me and telling me to shut up. I just can’t understand! I worked this weekend and she was pretty good for daddy…….

November 30^th, 1998:  Sorry you had such a bad Thanksgiving.  Our morning started that way, she was writing on other people’s papers, unfastening her pants in circle time, stood on the chair, constant “shut up”, some hitting.  She had to sit with me.  She kept hitting Frank and had to be removed from the class, she kept saying “shut up mommy.”

*December 1st, 1998: We had lots of hitting yesterday. Her brother fought back! I guess her new annoyance is undoing her pants. She was doing it a lot when we were outside. What’s the best thing to do about all this hitting? It’s driving me crazy, she really will get you hard!

December 1st, 1998: We all agree that something has to be done about the hitting so that is an “undesirable activity.” She should have as little interaction between you and her as possible, it seems to be working here at school for me, but not for Paula. I’m glad that Sam is big enough to fight back but sorry he has to.

December 3^rd, 1998:  L has been very scary today, very defensive and didn’t seem to understand when we talked to her, didn’t eat lunch, she hit a girl in PE and pulled her hair, noticed a lot of nail biting, teeth grinding, and some staring episodes. 

*December 4th, 1998: I’m afraid it is probably all the medicines she’s taking that is making her so crazy. She’s still on her antibiotics for sinus infection so that adds to it. We meet with doctor in early January and I talked to him this week about all the problems. He feels it’s all the drug interactions and wants to give it until our appt, then we will talk seriously about the implant. Keep letting me know about any staring or any strange behaviors. If it gets unbearable, let me know and I’ll call the doctor. It’s been so hard, I know. At home I try not to mess with her, she’s better off if I just let her be (I hate that, but what else can I do?).  

December 16^th, 1998:  Quiet today but very impulsive, unzipping pants, chewing headphones, cut up set of flash cards, and colored on everyone’s pictures.

January 12^th, 1999:  L was really shaky today, I’m not making any demands on her.  There was lots of hitting, starting on the bus.  I’m interested in hearing what the doctor thinks about all of this, let us know.

January 14^th, 1999:  Wow!  It has been a day.  I finally just kept her by me and held her hand.  Bless your heart; I hope you got some rest today.  She was calm when we were working on the computer, but rest of day has been in high gear.

*January 15th, 1999: Elaine, sorry I haven’t written too much lately, as you can imagine it’s been a little hectic! I’ve got Lauren back in pull-ups because for now it’s just one thing we don’t have to mess with. Next week we will be out a couple of days. She’s having another MRI and EEG to check for any changes with this most recent regression.