Naomi was put on 1300 calories a day last Friday hoping that would help her seizures. It hasn't.
I got the prescription for Zonegran filled Monday evening and hated to do two changes so close together, but I had to try something else.
So now it's Thursday and for two mornings Naomi has woken at 4:30 a.m. Then only napped about an hour during the day. She didn't go to sleep last night until about 9:30. Tonight I'm taking her up before 8:30 and hoping she'll fall asleep soon.
She's having over 40 seizures a day and it feels like all we do is follow her around waiting for a seizure to happen.
Last night and this morning she didn't seem to have the appetite she has had. I was afraid it was the Zonegran causing loss of appetite. Well, she ate the rest of her meals well, so I guess we're safe there.
I called Cleveland Clinic this morning to ask the nurse about sleeplessness and loss of appetite as side effects. Then the more the day went on the more I decided I wanted to meet with the Dr. face to face. So I called to make an appointment and they can actually get us in tomorrow afternoon!
Normally, my day would be wide open. But don't you know I had a 2:15 appointment to update Naomi's IEP and a 4 o'clock hair appointment with a beautician who is booked for 2-4 weeks out! So I had to cancel both. The hair appointment hurt the worst! :) You know how it is! You finally get to do something for yourself and have to make other plans and push that back.
So tomorrow we'll see her neurologist and see what she says. I've sort of had it with the diet. It just seems no matter what we do we're not getting consistent results. Normally if you fast the child and see positive signs such as lessening of seizures, it means they are getting too many calories. When I fasted Naomi for 24 hours she stayed much the same, even having some stronger ones towards the end of the fast. So then she just kept going down hill. The dietitian added calories. Naomi is active and my one thought about the calories was that most children who are about to turn 4 don't need a daily nap after sleeping 10 hours. But she would. So maybe she didn't have enough energy to get her through the day. Now with these 4:30 a.m. wake ups she's got way too much energy!
Oh, well. I'm not going to ask to stop the diet, but if the doctor suggests it I'll go along with it. Although in all honesty. I would really have a hard time figuring out what to normally feed Naomi! I've weighed her meals and went by her little chicken, vegetable or fruit and cream meals for over a year now and that just seems normal.
1 comment:
Just catching up after a week of little blog reading. We've found that Jade's sleep is disrupted for a month or two every time we made a change to her diet (except when we went to 5:1). Every time the ratio went up she'd take 3 or 4 hours to fall asleep at night.
Also, it can take a few days after a fast to really see what the fast does -- not necessarily just the day of the fast.
Ah, Jenny, I wish things were going better for you and Naomi. :(
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