Time Flies When You're at the Doctor's

Is it possible to say that it's obvious we have been busy when it's been over 2 months since my last post. A lot has happened with Grace in that time, and I think it may be easiest to sort of do a play by play.

Part of the reason I am doing this blog is to help me keep track of her progress. The other is to keep anyone who is interested, informed.

Sunday, July 30: I went to Salt Lake to work at the hospital (St. Mark's) since it had been 3 months since my last shift. I felt like Grace was stable enough for me to go. The kids spent the day together mostly with their grandparents. Dave was also in Salt Lake and we both got home late last night. During the early AM, Grace started having seizures about every 20 minutes. They last about 30 seconds. By morning when she was awake, she fell into/onto the door and scratched her face. I heard the thud and ran upstairs and found her face planted in the door having a seizure. The rest of the morning she experienced more seizures without having an aura.

I spoke to the on-call peds/neuro doctor who agreed it may be best to take her to the emergency department at the hospital in Richfield (one hour away). While at the hospital, Grace had a seizure. She commented afterward that she could hear herself "breathing funny" and wondered if that is what she sounded like during a seizure. Grace's lab results came back normal, so she was released (with Zyrtec for allergies) and sent home with a note to call Neuro on Monday to follow-up. Grace continued to have seizures during the day- in the car, at the Lodge, etc. They finally subsided around 11:00 PM.

The trend seems to be that if she has seizures during her sleep (at night/early AM or naptime), she has them during waking hours without knowing they're going to happen.

Tuesday, August 1: I spoke with Grace's doctor today and he said that she wasn't at the maximum dose for her weight. We increased her med to 2 tabs of Trileptal in the evening. Now she takes 1050mg Trileptal per day.

Grace hasn't had anymore seizures since Sunday, but yesterday she kept dropping things with her affected hand and having leg twitches. The doctor said this is normal- kind of like aftershocks.

Thursday, August 3: I am in Santa Barbara until Monday night at my best friend's bridal shower. When I called home this afternoon, Grace had been having seizures since her nap. This isn't surprising since the new dose of Trileptal won't be effective for 1-2 weeks.

Sunday, August 13: It has been 10 days since Grace's last seizure and almost 2 weeks since her new increased dose of Trileptal, and Grace started having seizures again- 2 during her nap, 1 while she was in the chair, 1 while standing in the kitchen, and 2 on the couch.

It's almost like we're in the movie The Awakenings. Everytime we increase her med dose, she is seizure free for almost 2 weeks and then the seizures start up again. She did go to bed later than usual last night after fishing with friends at Fish Lake. Maybe that's too much stimulation for her.

Wednesday, August 16: Stacie is visiting with her kids since last night. Grace started a round of seizures again starting early this morning (5 AM). During the course of the day, she had about 12 seizures- each one progressively longer. She has still been taking a nap everyday, but again if she's awake past 8 PM, its seeems like the seizures start up again.

It is hard to limit her "fun". She wants to be with the kids and play, and she has such a hard time falling asleep when things are going on. The only time she's sleepy is when she's adjusting to a new medication dose.

Sunday, August 20: Here it is Sunday again and the seizures have started again. What is it with Sunday? We went to the Rodeo last night but I brought her home early and she was in bed shortly after 9PM. Even with naps, too much stimulation equates seizures it seems. She loved the Rodeo and didn't want to miss it. This is frustrating.

3 seizures in the early AM (1 made her fall off the bed), 1 during nap, 1 playing in the basement, 1 at the neighbors house (fell into the door), and the worst 1 while she walked past the open basement door and she fell down the entire flight of stairs. She got some major bruises on her head- she cried so hard and who would blame her. The seizures make her agitated as it is, not to mention the pain when she gets injured.

She had 5-6 more seizures after she went to bed and they finally stopped at 11 PM.

Monday, Augusts 21: Grace had no more seizures today. Sundays have definitely been the toughtest days on her. I spoke with the PA today and discussed adding a new medication to her regimen. Grace will meet with Genetics on Wednesday, and then we will start her on the med-Keppra, increasing the dose every 5 days. Keppra takes 3 days to take effect.

Wednesday, August 23: We spent the night at Scott's house and Grace got to ride Scarlett which is very therapeutic for her.

Dave and I met with Genetics today with Grace and learned that they isolated her gene, which is good. Now they know that she has this genetic defect for sure. The good news is that it is one of the only mutated genes that doesn't affect other organs in the body. Grace's problem is specific to the development of her brain in utero. She can have children in the future, but will have to use "family planning" to make sure that the mutated gene is not passed on.

I also had my blood drawn today, so they can look and see if I also have the gene. It is possible that I might, even though I am not symptomatic. They are certain that Tommy doesn't have it, because if he did, he would be severely retarded. Caroline could also have the gene but be asymptomatic.

We learned the X chain is really long with lots of information compared to the Y which is really short. They explained that gentetic mutations tend to be on the X. So in boys, they have the worst problems because they only have one X and can't shut it down. Whereas in girls, since they have 2 Xs, if one has problems, they use the good X instead.

Sunday, August 27: Dave and I returned from Santa Barbara today, from Lisa's wedding. Grace was staying in Las Vegas with my brother Philip and his wife Meiken. Meiken was able to be 1:1 with Grace so we could ensure her safety. We didn't want to be gone for the wedding and send Grace to school in Teasdale and then have a problem with medical help so far away. Grace did well over the weekend, with only one seizure early Sunday morning. We all slept over in Las Vegas Sunday night and then headed home.

Sunday, September 2: Grace went to school this last week. She started Keppra 500mg 2 times a day yesterday which is her final dose at this point. She only had one seizure on Friday, otherwise seizure free all week.

Grace has been pretty emotional this week, crying a lot and complaining of headaches. I don't know if it's related to starting school or the meds. She has been taking short naps everyday and getting to bed on time.

Sunday, September 10: I went to Salt Lake tonight to sleep over because Grace is having an EEG tomorrow. We are going to bed late because she has to be sleep deprived for the EEG. Grace started having seizures on Friday which is one week since her last seizures. It's almost like her body knows it's Friday- school's out, that sort of thing. She has been on the Keppra for 19 days and she seems to be tolerating it pretty well. It definitely has eliminated most of her breakthrough seizures, especially the ones that happen during the day.

She had 4 on Friday- one while walking down the sidewalk to the movie theatre. She had 4 on Saturday but they were early morning while she was sleeping and during her nap. She also had a couple early Sunday morning while she slept.

Monday, September 11: It was tough to get Grace to sleep during her EEG. She had a small one during the test and the technician came barging into the room which woke her up, so it only last a few seconds. Dumb technician. I explained that I would supervise her and she needed to let any seizures she had run their course.

The other dumb thing about the EEG is that I learned that Grace was supposed to have an overnight EEG instead of the one we did today, but they scheduled it wrong. It is so frustrating to be at their mercy. They have no idea how difficult it was to get Grace to this test all prepared. Yet, I understand because Grace is just one of what seems like a billion kids in the neuro office. I don't think there is any way they can really remember us, which of course leads to mistakes in scheduling, etc. I guess it could be worse, and she could have a worse neuro diagnosis.

Tuesday, September 19: Last weekend, we went to Lake Mead with the family for our annual waterski trip. Most people in my family couldn't come and the weather was terrible. But we did get one good 1/2 day on the lake. Grace did pretty well with the stress of the trip and only had a couple seizures here and there during her sleep.

Today I took Grace to Richfield (1 hr away) to meet with all of her doctors that come to the outreach clinic. First we met with the Neuro MD. It was the first time we had seen him since she was in the hospital. It was like meeting him for the first time. The other time we had an appt with him in Richfield, he didn't come. The other 2 times we have met with the Physician's Assistant. Talk about being forgotten. He didn't know that Grace had an EEG or the results of the EEG. He also didn't really know her medication doses. Like I said, we are a drop in the bucket- insignificant. We did talk about her med doses, and we are going to increase her Keppra dose to 750mg in the morning and 500 mg at night.

We met with Genetics, but they didn't have the results back from my labwork. We also met with a behavioral pediatrician who gave us some ideas on how to work with Grace. She believes Grace is not ADHD but is instead has PDD- Pervasive Developmental Disorder NOS which fall in the Autistic Spectrum Disorder. She's not autistic but because of her neuro problem, she exhibits some behaviors that autistic kids have. She said that Grace's world is very black & white and she has a hard time with social skills. She gave us some ideas as to how we can help her intermix with kids, make social decisions, etc. We will be working with the psychologist later this week that will give me more info.

Friday, September 22: Yesterday and today, Grace met with a state psychologist who performed more testing on Grace. Some of it I watched behind a mirrored window. The testing results were very similar to the testing we had done last February. Without labeling Grace and announcing her test scores to the public, let me say that her brain is inconsistent, which makes the test results atypical. He explained that it seems like sometimes her brain will tell her the answer and sometimes it won't- like neurons aren't connecting like they should. For example, sometimes Grace can do a math facts page with no problems and then minutes later she can't add 2 + 0, and stares a me with a blank face.

He gave us some paperwork to read and some reading references. He suggested teaching her rote information using music so she can retrieve information using a pattern or song. All I can say is that I feel overwhelmed, knowing that I have a child with limitations. It is difficult to describe how I feel right now.