Monday, November 10, 2008

Diet

Well Saturday was awesome, then Sunday sucked! Naomi had 75 seizures in about 15 minutes on Sunday morning and some of them really "grabbed" her and her head dropped quick and her stomach tightened up. Her Ketones were low in the morning so at lunch I didn't give her any carbs and by 2 her ketones were high, but that doesn't do us much good when the biggest part of her seizures happen when she first wakes up. At bedtime her ketones were back down to moderate and this morning they were just at 15 which is trace. They should be 80-160, high.
I took her for her weekly weigh in at the Dr's today and she weighed 13.2 KG which is about .3 KG more than last week. Her diaper was wet and I'm about to get out the scale and weigh her wet diaper to see if it weighs near .3 kg! I can't imagine them taking calories away! She was only getting 950 a day then they did add a 100 calorie "snack" at night. ARGGGGGGGH! When you figure 85% of her diet is fat that means in a 1000 calorie diet only 150 calories are from real food! It's frustrating! Trying to keep the ketones up is hard and frustrating when you're doing everything you're supposed to and they still drop! This week I am going to stay away from hot dog and salami meals and basically just stuff her with chicken breast at 2 meals a day and see if that helps. I also am going in to her diet plans and putting in exact types of vegetables, fruits and meats. No more generic 10% fruit or Group B vegetable or lean meat. I want to know exactly what the ratio is for the exact food I'm giving her!
Hopefully we'll get answers, blood work comes Wednesday and I'm anxious to see what her medicine levels are. She used to take Keppra in the liquid form and now I have to crush pills for her. I feel like there's a difference that may be linked to the meds, even though there shouldn't be, it's the same med, just different form.
She's never had such fits of rage where you just can not do anything for her! She gets mad if I go into the kitchen and come out empty handed and will throw her head side to side fall on the floor and sometimes even get on her knees and bite the carpet and pull it up until it snaps back down! We've gotten to the point we just put her down and let her get it out of her system. Then at the end of the fit usually comes a small seizure or two. So it's a loose loose situation. She gets mad or hungry and pitches a fit then she has a seizure! If we try to hold her she either slams her head into us or bites us. Last week one day she bit my wrist so hard I sat her down and went upstairs. I thought "if my dog bit me as often as my child I'd have sent the dog off to the humane society a long time ago!" isn't that awful! I just had to get a break from her! I have 2 bites on my arms and one on my shoulder, it hurts. The wrist hurt so bad I didn't even want to move it.

1 comment:

Fawn said...

Oh, yikes, Jenny - that's really rough. Hang in there! Our little ones are so frustrated. They're at the age where choice is the ultimate power, and we have to take a lot of control away from them by regimenting exactly what they eat. They have no idea how to deal with their anger. Not much fun to live with at all. Big hugs!