02-01-2003

Sheila started Lamictal at age 15. While I think that part of the problems she had with it came from starting with too big a dose. Sheila had a horrible experience.

The first dose was given at night, I think it was 1/2 a 25 mg tab. In the am, Sheila was a little grouchy, and more wiggly than usual. It was hard to get her to eat. By the afternoon (after just 25 mg total) Sheila was irritable, everything seemed to make her jump, she was unhappy. BUT there was no seizure activity after about noon that day, which was extremely unusual. In an ordinary day, Sheila was typically having 3-4 long mixed tonic/clonic/focal seizures that lasted 15-20 minutes. By the second day, Sheila was very irritable, and unable or unwilling to eat but a very tiny amount...But still no seizures. By the third day, Sheila was agitated, sitting on the floor with her head flinging from side to side, and both arms and legs flying around. On the 4th day, she couldn't hold still long enough for me to put a spoon in her mouth, she was completely hyper. She was only sleeping from about 2 am til 6 am. Ordinarily she would fuss at me if I didn't have her in bed by 9:30 PM. She had the skills to keep herself from hitting things as she moved around, but on the Lamictal she was flinging her arms and legs so much that she would overbalance. She split her lip, bruised her chin and cheek, and got a big mouse over her eye.

By the 7th day, she was not eating, couldn't sit still, was sleeping less than 3 hours a night, AND had begun this shriek/squeal that would make my ears hurt. On this night she COULD NOT go to sleep, was so hyperkenitic that I couldn't let her stay in her bed, as she kept flinging herself out. I could get only about a 1/2 cup of any sort of food into her in an hours' time. She stayed awake, with constant motion, constant shrieking and I could just tell that she was absolutely frantic and miserable. She did this with NO sleep for 44 hours straight. (Imagine, or try, sitting on the floor, both legs straight out in front of you, alternately lifting and kicking out with your feet. Then add a movement from the shoulders of both arms, moving your hands up from your lap to shoulder height and out completely to the side and back in. Keep doing both of these movements with both arms and legs and turn your head quickly from side to side. Don't leave out the shriek when your head reaches the end of the rotation to each side!) I called the neuro that day and said we are off this stuff, I'm not giving her another dose. They said, no, no, you have to wean her off. She didn't get another dose.

Sheila was on Lamictal for 10 days. She had no seizures for about 6 months, but I'm not sure that was from the Lamictal, or from the fact that she refused to eat for 6 months, with the same result as a ketogenic diet? She lost 18 of her 64 pounds, was constantly sick and dehydrated. I was spending 6-8 hours a day trying to get food into her,(really force feeding her, with her head in a headlock and forcing the spoon into her mouth) and if I got 1.5 cups of anything down her(in a day!), I was doing great! It took me 4 months to convince the doctors that she needed a g-tube. (On a funny note, our pediatrician, who I really like, made us 2 appointments. One with the gastroenterologist for the g-tube, and one with his associate: a psychologist who specialized in children with eating disorders. I could just see the doctor saying: "So Sheila, tell me what it is about food that you find distressing?")

The G-tube was a great thing, I could get all the calories in that she needed, I still offered food several times a day, but didn't have to stress over how much. We decided that we would attempt to feed, without forcing, for 1/2 hour 3 times a day. I really feel like Sheila had forgotten how to eat, but after a month's time, she started taking food again. I would usually have to steady her head for the first bite at each meal, but then she would open her mouth for the remainder of the food. Withing 3 months, we were only using the g-tube for extra liquids,or when she was ill. She eventually gained back all the weight that she had lost, probably over a year's time.

So that's Sheila's Lamictal tale.

Glenda Anderson Mom to Sheila Smith 3/8/80-11/28/02