Hi-Ho, Hi-Ho, Back To The Neurologist We Go

For these last few weeks, Raquel has been a bit out of sorts. She was on Spring Break for two weeks and was supposed to go back to school today, but Mike and I decided last night to keep her out until we can at least talk to Dr. Mower, her neurologist, about the changes we are noticing. A lot of these things tend to happen when she is tired or upset, and since she spends a good portion of her time at school upset, we didn't feel it was in her best interest to be there right now.

I guess about 2 or 3 weeks ago, I began noticing big changes in her sleeping patterns. One night she woke up at 1am, bright eyed and bushy tailed, ready to start her day, which was very annoying since I had no plans of starting my day that early! Instead of going to bed at her usual 8 - 8:30pm time slot, she's been staying up until 9:30 - 10:00pm and then sleeping in much, much later. But even though she is sleeping in, she continues to nap at her regular time and sleep just as long as she normally does. Naptimes are still a really good thing!

Then last Friday, we were at the mall and I feel she got over stimulated by some rowdy kids in the play area. Typically when this happens, she will immediately sit down and act scared. This time, she walked over to me and when I picked her up and put her on my lap, she started throwing herself back, doing weird things with her mouth and jaw, and closing her eyes. It lasted very briefly and once we left the play area, she had some snacks and was back to her regular self. But she has continued to do this sporatically since Friday, and I would be lying if I said I wasn't freaked out by it.

This morning, we took her to see her regular pediatrician to rule out a cold. She's had a low grade fever and her throat sounds very raspy, so I wanted to make sure antibiotics weren't needed. Her doctor thinks she may have some kind of virus because of the gurgling sounds but said her throat isn't inflamed, her ears look perfect, and her lungs sound clear. She didn't think a sinus infection was going on because she doesn't have a runny nose, but admitted that she looked like she didn't feel 100% and to give her plenty of fluids and treat the fever with Tylenol.

Last night, I wrote out some questions/concerns for Dr. Mower so I wouldn't forget them when he called. The concerns are:

• Depakote dosage times. I've changed it from giving her morning dose before school at 7:30am to once she gets home around 11:30am because of the medication giving her a headache. But by doing so, this means her nightly double dose is only 8 hours later, and something in the back of my head says that Dr. Mower wanted the morning and evening doses 12 hours apart.
• For the past 1 1/2 months, the pharmacy has been substituting Depakote with a generic brand. When I asked my previous insurance why I had to pay $97 per month for her medication - instead of my $15 copay - they told me that Dr. Mower instructed them not to substitute Depakote for the generic form. I need to confirm this.
• Sleep changes are a concern. She doesn't appear to get into a deep sleep at night anymore.
• Twitching - restlessness. When I hug her, I often feel her shaking on the inside. She has a very hard time sitting still, even when eating. She seems very stressed and aggitated.
• Balance issues. She's very unstable on her feet and clumbsy. She no longer tries to climb into the bathtub or on the couch. It appears that her depth perception is off.
• Obviously, the mouth, jaw, eye thing is a huge concern.
• She seems pale. I don't like her coloring at all.
• I need to verify what pain medications are okay to give her with Depakote.

It's really hard because I don't know what side effects she is experiencing. I know that on the bottle it says it can cause drowsiness and dizziness, but Raquel can't tell me what is happening to her and as a mother, it is an overwhelmingly helpless feeling having to play the guessing game when so much is at stake.

But again, I continue to look at the cup as being half full and know that she was put here in my life to teach me something valuable and important. And I also know that I'm a stronger person because of this.

I'm hoping to hear from Dr. Mower very soon and get some much needed answers so my girl can continue making progress.