Taking It One Day At A Time

Raquel had a great week after her ER visit earlier this month. Once she got past being overly medicated that initial week, the second week was wonderful - no focals at all and she was my happy camper, eating well and getting back to her normal self.

The week after Mother's Day, the girls got the flu. It was impossible to get any meds in Raquel because she'd either throw them up or refuse the food in the first place because she didn't want to eat. Because of this, her medication levels dropped very low again and the focal seizures started to re-occur. I spoke with her neurologist, gave her an extra dose of meds, and that seemed to get her, again, back on track.

But Raquel continues to be a bit stubborn. It is getting harder and harder to get the meds in her. We are constantly having to rotate food items - the capsules can't be put in liquid and they can't be in anything that she has to chew. She is sick of yogurt, ice cream, pudding, applesauce. We've even tried baby food desserts. Sometimes Mike will literally have to hold her down and force it in her if it's been a very trying day for me. But if she gets all of her meds as prescribed, she does great. When she's only getting a half a dose here and half a dose there, we notice obvious changes. And since the medication costs over $100 per month now, we can't go around wasting the stuff.

Sleeping is back to normal, with her going to bed at the regular time and waking up bright-eyed and raring to go. And she's talking more and more, and clearly understands more and more, too.

We have our next follow-up with neurology on June 22nd, and the 24-hour video EEG monitoring has been scheduled for August 16th. I'm pretty nervous about that one - don't know exactly how I'm going to keep her confined to a room for 24-hours, but have a lot of confidence in Children's Hospital and have to trust that they know what they are doing and will help me get this done.

As for Gabby ... she continues to be the best big sister ever and really steps up to the plate and takes care of Raquel when needed. The seizure part really freaks her out, as it does me, but she's learning to deal with it better over time. Yesterday was her end of school party at The Wave Waterpark. She had a blast - and I had a blast seeing her have so much fun with her friends!

Here she is with the biggest snowcone ever! I swear the thing was as big as her head when she first got it...



Playing in the freezing cold water (I didn't go into that pool - she was mad at first)...



And here she is posing for me in the car on the way. I love you, Gabby!! I am so proud of you.

Looking forward to the long holiday weekend. Mike and Gabby are fishing today at Canyon Lake...

She's definitely Daddy's girl! :-)

Impetigo, Strep, Focal Seizures & An Ambulance Ride to ER

What a fun week we've had.

Last weekend, the rash on Raquel's face continued to look worse and worse so Monday I took her to the pediatrician to find out about getting some kind of ointment. Mike was really sick with strep throat so I wanted her checked out to make sure she wasn't developing the same thing. Turns out that she has strep induced impetigo. We were given antibiotics plus a prescription ointment, which really seemed to help almost immediately.

I also picked up the brand name Depakote and began giving Raquel this instead of the much cheaper generic version. Again, we began to notice changes pretty quickly. She stopped looking at what I was trying to feed her and it was much easier giving her the meds. She also started waking up at her usual 7am time slot instead of sleeping in until 9:30am. It seemed like she was getting back to her old self.

Well, not exactly. I continued to notice these weird episodes where her eyes would kind of roll back and she appeared to "check out" for a few minutes. After speaking with the neurologist last week and him telling me that based on all of her test results, he thought it would be very unlikely that she'd be having true seizures, I just kind of dealt with it. But these episodes seemed to be getting a bit more frequent and gave me a very uncomfortable feeling.

Yesterday, I got her out of the bath around lunchtime and was changing her on the couch. An episode started that freaked me a bit, to the point where I called Mike to come help me. By the time he came into the living room, Raquel was sitting there watching television. He told me she was fine, that her body is adjusting to less medication and causing certain reactions.

Then it happened again last night in front of Mike. This time, it lasted longer and Mike thought she stopped breathing and was ready to start CPR but then she kind of snapped out of it. He took her outside but she was still out of sorts and very pale. He told me to hurry up and call 911. The paramedics were here within a couple of minutes and I rode with her in the ambulance down to the Emergency Room at Children's Hospital.

They immediately started an IV, gave her Ativan (I think) to calm her and did some blood tests as well as an EKG because her heart rate was really fluctuating. The EKG showed her heart was perfectly fine, but the blood tests showed that her Depakote levels were extremely low, and because of this, was triggering her to have focal seizures. ER spoke to her neurologist (not Dr. Mower but one in his group who was on call), and he wants us to stop the weaning process immediately. They gave her a double dose of Depakote through the IV last night, which took 30 minutes, then they monitored her for another hour after that to make sure her vitals were still okay. At 1:30am, we were finally discharged.

But she was so exhausted. She hadn't slept the entire night - even after getting the Ativan plus the Depakote through the IV. I thought for sure she'd sleep on the way home but not a chance. I finally got her to sleep close to 3am and expected her sleep long and hard, but she woke up 7am instead. She continues to be extremely medicated and is unable to keep her balance and falls down alot, so we've been confining her to a blanket surrounded by pillows.

Instead of eliminating the Depakote, the neurology department wants me to increase her morning dose to two capsules instead of one, and keep the nighttime dose at two capsules - until I can sit down with Dr. Mower and come up with some kind of game plan. The follow-up paperwork states that I need to see him within one week so I will call him first thing in the morning to schedule the appointment.

I hate seeing her so drugged but I guess that is better than her having the focal seizures. It was a very long night but at least we have a few more answers. We know that her heart is fine, her electrolyte levels are great, and now know why these seizures are happening in the first place. And I'm just really glad she's home and not still at the hospital.