The only problem we've been having with the back to school thing is that her medication makes her very tired and she will often fall asleep during class - or typically - during speech therapy. On one occassion, the speech therapist actually carried her asleep out of class and over to my car! And trust me, carrying her heavy self that far was not an easy task. My back hurts just thinking about it. Here is a picture I took a few weeks ago. I was pulling up to drop her off at school and said, all excited, "Are you ready to go to school, Raquel?!!" and then saw this in my rear view mirror...
I took that as a no.
Even though she's been attending class on a regular basis, a couple concerning things have happened that I probably should have posted about earlier but haven't. I would say this started shortly into the second week of March. I was waiting in the parking lot to pick her up when I got a call from her speech therapist about 15 minutes before class was to end. She said to get to the classroom right away, that they think Raquel had a seizure. I obviously ran to the room and found Raquel slowly walking around, and a little out of sorts. She smiled when she saw me, but I could tell she wasn't her normal self. Apparently she was doing an activity with Miss Sara and all of a sudden, started staring, her lips began to turn blue, and the shaking began. I was told this lasted about 40 seconds. A few nights prior to this, the same thing happened at home. She fell to the ground and her lips started to turn blue and she got really stiff. I did not see any visible shaking, and when I called her name a few times, she came out of it.
I spoke with her neurologist about this and the overall concensus was that since she has gained so much weight being on the Prednisolone, the Keppra doseage is now too low. When we first started her on Keppra, she weighed 36 pounds. She is now 44. So, he had me increase her dose from 2ml twice a day to 3ml twice a day, and that seemed to work - for about a week. Then last Wednesday, Miss Sara called me right after I dropped her off at school to tell me she had another seizure in class. This time, it lasted a lot longer and the shaking was more visible. Dr. Mower increased her medication again - this time to 4ml - and Thursday, Friday and this past Monday were Raquel's best days in class ever. She wasn't sleepy, Miss Sara said she was more engaged and interactive, and everything seemed to be going well. We were all pleased and feeling very optimistic.
This past Tuesday, we checked into Rady Children's Hospital for her follow-up video EEG test. This was a scheduled test to compare to the one she had last August and see if adding the Prednisolone has decreased the abnormal brain discharges. I wasn't looking forward to this test by any means, but wasn't dreading it either since I've done it before and it really wasn't that bad - just more of an inconvenience of being there so long and confining Raquel to a bed for 24 hours.
This is the only picture I took - her in the hospital gown getting ready for the technicians to hook up the electrodes you can see layed out above her head.
Last time, she was a good little patient and although she wasn't happy about the procedure and was obviously annoyed, she didn't put up much of a fuss. This time was a different story: she was MAD. Another technician had to be called in because me and the other nurse couldn't hold her enough, and she pretty much ended up screaming and crying during the entire hook up. Not at all how I wanted to start this test out. Once everything was hooked up, vitals were taken, and all the admission paperwork was signed, everyone left so I could hopefully get her down for a much needed nap and attitude adjustment. About an hour later, she was resting comfortably. I was relieved, ordered her dinner, and started to get us settled in.
Then the nurse came to take her blood pressure. I asked her not to, that she was finally sleeping, but was told that the head nurse needed it for her chart. So, she quietly slipped the cuff on Raquel's arm and started the machine. Once the cuff began to tighten, Raquel was startled awake and became very aggitated by it all. To make matters worse, the nurse was struggling with the machine and kept getting inaccurate readings even after attempting the test 4 times. When she was leaving to find another machine, Raquel's face turned red, her eyes rolled back, her body got stiff, and she started to shake for what seemed like forever. I pushed the call button and screamed for help and and when the nurses showed up and tended to Raquel, I went to the back of the room and just cried. I can honestly say that I was absolutely terrified. The nurses documented the seizure lasted approximately 4 minutes from start to finish. I should've been the one documenting the time, but - was more comfortable in the corner. The head nurse also talked into the sound microphone giving discriptions of what was happening so Dr. Mower could listen to that while he watched the seizure taking place. All sounds and images are recorded during this 24-hour hospital stay.
After the seizure, Raquel was very tired, and slept and slept and slept. This happened at 4:45pm, and at 8pm, I had to put the light on to wake her up so she could have dinner and give her the nightly meds. She fell asleep at 9pm and slept until 7am. And she slept pretty soundly. I'd know because I didn't sleep at all. I sat there and held the "help" button. Really.
When she started to wake up, I sat down with her and was giving her some cereal snacks. After a few minutes, her face again became a bit flushed and she starting staring and not looking right, and then mild tremors on primarily one arm started. Again, I hit the help button and the nurse came in and before she got to the room, it had already subsided. A few minutes later, another one happened. Again - me and the help button called for the nurse. This time she stayed with me after the second seizure stopped. While I was answering the nurses questions, another one started. She apparently was having what is called a "cluster" of small seizures. The nurse asked if this always happens in the morning when she wakes up and I really have no idea. I would like to hope it doesn't, but I'm not in her room when she wakes up like I was yesterday and typically don't wake up my sleeping children unless it's absolutely necessary.
When Mike & Gabby showed up to take us home at 1:30pm yesterday, I was really concerned that Dr. Mower would want to observe her for another night because of all the stuff going but he didn't. He came in and went over all the test results, and was very sweet when he took me aside and told me that I need to calm down when the seizures happen. Again, he had not only video but audio and could feel my panic. He said that he knew I was scared that when this happens she is going to die and that I need to realize what she has is not life threatening and that I need to calmly be there for her and help her through it. Hearing that did help. And when she started having yet another seizure - in front of Dr. Mower - I was much calmer and he was able to explain to Mike what he was seeing on the EEG screen. He then ordered up an IV for a big dose of Keppra to get her meds at a regular level then switched a few things. The EEG showed that Raquel is definitely having true epileptic seizures at times now, which is common for her LKS, and she is going to be weaned off the Pred over the course of 5 weeks. He has also increased the Keppra dose for now and we'll just go from there.
I can't tell you how happy I am to be home. And I can tell my little Rock Star is, too. So - we are all glad to be home and she has had a great day. And no seizures at all.
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