Gaining Weight

Being the mother of a child with epilepsy puts me in a unique position.  I mean, that should be fairly obvious, right?  I'm talking about beyond the seizures here, though.  My daughter doesn't gain weight.  In the last two years, she's stayed at right around forty-five pounds.  Two year old kids weigh more than that.  We've tried to correct this problem, too.  About a year and a half ago, my daughter's pulmonary specialist was concerned that she had cystic fibrosis because of her breathing issues and the fact that she was underweight.  She was tested, and thankfully, it came back negative.  Then we tested for a gluten allergy, and that came back negative, too.  Finally, we just decided that her medications were affecting her ability to gain and keep weight on.  She went on Megace, which was very effective, but it's not a drug that most pediatricians will prescribe for children.  She was only on it for a few months, and she gained fifteen pounds.  As soon as she went off of it, she began to slowly taper down in weight until finally, she was back at forty-five pounds.  We just kind of lived with it.  I kept her off of her ADHD meds on the weekends, and calorie loaded her on those two days.  During the week, I supplemented her diet with Boost with Protein, so that I knew that she was getting all the daily allowances for the important stuff her body needs. 

When she was in the hospital over Christmas, she lost two more pounds.  I finally decided that I'd had enough of her not being able to gain weight, and I scheduled an appointment with a nutritionist.  She talked to me about calorie loading my daughter all of the time, and what medicines are effective for weight gain.  One of those is Cyproheptadine, which she has been on before.  Since it is an antihistamine, she had wonderfully clear breathing, but it didn't do anything to increase her appetite.  Besides that, I'd like to avoid drug intervention at this point.  She's already on so much medication for the seizures, and I don't want her to be reliant on a pill to make her hungry.  I want to exhaust every avenue before we just add another medication.

So, I'm calorie loading her.  I'm taking Pediasure 1.5 Cal, and add two tablespoons of whole cream and chocolate syrup.  A 350 calorie drink now holds about 600 calories.  I'm giving that to her twice a day, plus I'm adding anything I can think of to her diet.  If she's hungry for it, then I'm giving it to her to eat.  I realize this isn't exactly breeding healthy eating habits, but I'm talking about a kid that would rather eat a Caesar salad than a candy bar.  Those healthy eating habits are already there, and I doubt that calorie loading her is going to undo that. 

Do you see what I mean about epilepsy not just being about the seizures?  It's so much more than that.