Friday, March 16, 2007

The last 2 month's Recap

I will try to be more regular for whomever is reading this.

A Horse is a Horse ...

Last Saturday, our very old mare Virnessa was laid to rest. She is the horse in our Christmas pic from 2005. She was losing lots of weight over the last month. Grace has been faithfully feeding the horses for the last little while. It is her chore which she is very happy to do. We spoke to the vet about having her put down. The plan was to do it this week.

Well, last Saturday came and she was on the ground. She was too weak to get up. Thanks to a wonderful Grandpa Van Dyke, he followed through with the rest and she is now buried not too far of a walk from our cabin. The kids visited the grave with their Grandma on Sunday who told them about her good life and how it came to an end. She was probably close to 27 years old.

March has been good to us

Grace has not had any more seizures since her new dose of Keppra has taken effect. We have a doctor appt at the end of the month with a sleep specialist followed by a sleep study to make sure she is getting the proper type of sleep.

Current Meds
Keppra 1000 mg twice a day (2000 mg)
Trileptal 300 mg twice a day (600 mg)
TOTAL= 2600 mg

Old dose last October
Keppra 750 mg twice a day (1500 mg)
Trileptal 450 mg AM, 600 mg PM (1050 mg)
OLD TOTAL= 2550 mg

I was hoping we would be decreasing the amount of meds she needed, but look it's about the same, just different strengths of each drug. I believe the Keppra is more effective than the Trileptal, so I'm okay with the switch. The meds still cost about $210/month with insurance.

Just think, Neuro originally thought she would be stable with only 600 mg Trileptal per day. Now she is taking 2000 mg more meds than they originally thought. Kind of scary although it seems really stable right now.

Unfortunately, allergy season is starting early and I am now adding Zyrtec and Nasonex to her regimen. Poor kid.

Seizure Disorder Update

It's cute when I talk to friends or family and they try to remember the name of Grace's disorder. Seriously, unless you are a pediatric neurologist, you have never heard of Band Heterotopia. So we just say she has a seizure disorder. It makes more sense.

Grace has done really well since my last update in January. The last two months have been spent adjusting her medication doses. The goal is to get her seizure free. We had to adjust the meds because when she is sleep deprived or has anxiety or stress, it seems to bring on seizures. The docs are hoping that more meds will help here not be so sensitive to outside variables.

Tuesday, January 16, 2007

I decided to lower Grace's Trileptal dose again. If it is successful, I will call the docs. We had discussed doing this in October. She will be decreased 150mg per day.

Her dosing is now Keppra 750 mg twice a day, Trileptal 300 mg AM & 450 mg PM.

Tuesday, February 6th

I spoke with Lynn the PA yesterday. I explained that Grace had been successfully decreased 300mg of Trileptal. The major problem seems to be that outside variables like overstimulation, sleep deprivation, stress, and anxiety seem to trigger seizures. We decided to adjust her dosing again. Today I will increase the Keppra 250mg per day.

Keppra 1000 mg in AM, 750 mg in PM
Trileptal 300mg in AM, 450 mg in PM (unchanged).

Wednesday, February 7th

Today we went to SLC. I lost my temper with the kids in the AM because they were dragging their feet and being difficult which never makes leaving town easy. It is Tommy's birthday. We have a day complete with doctor and dentist visits. We will then finish the evening at Chuck E Cheese where a kid can be a kid.

PROBLEM- Grace had a long seizure in the dental chair, followed by one more in the chair, & 2 in the waiting room lovesac. Possibly the stress from the dental visit plus my yelling this morning contributed. Maybe she missed a pill I didn't see. It is too early for the dosing change yesterday to make a difference. The first seizure lasted about 2 minutes. The last time she had a seizure in the daytime was in November when she dropped (and didn't take) a Keppra pill.

When she keeps having seizures, I just want to say to her, "Stop having seizures. We need to get going," as if she has any control like burping or passing gas. So I had to take a deep breath and wait it out.

The evening was fun for everyone. I was paranoid about Grace's safety and followed her around all night. I always have flashes of her having a seizure in the corner somewhere with no one at her side, so she was very well shadowed at Chuck E Cheese. We had b-day cake at Matt's house with cousins afterward.

Thursday, February 8th

Grace had seizures throughout the night. We are staying at the Residence Inn with plans to go skiing today and tomorrow. I stayed behind today with the younger 2 and sent Dave with Caroline. I don't want to have the stress of wondering if she's going to seize today and fall off the ski lift, crash, etc.

Friday, February 9th

We all went skiing today. Grace only had a couple small seizures overnight so I felt it was safe to go today. All of the kids had fun. We went to Snowbird. Tommy & Grace were independent by the end of the day. It was fun.

Saturday, February 10th

Grace wet the bed last night and had lots of seizures during her sleep. It shows that even though she had fun skiing, it was too much for her little body. There's no way she could survive skiing back to back days at this point.

Today we met up with my sister April who is in town for 10 days. I napped with Grace and she spent all day loving April's in-law's dog. Grace loves animals and they prove very therapeutic for her. She had only a couple seizures Saturday night.

Tuesday, February 13th

Grace has been seizure free since Sunday, so I decreased her Trileptal dose as planned. When I spoke with Neuro last week, the plan was to increase Keppra and then decrease Trileptal.

Trileptal 3oo mg twice a day (new dose)
Keppra 1000 mg AM & 750 mg PM

Tuesday, February 20th

Grace had several lengthy seizures between 5 & 6:30 AM so I kept her home from school. Yesterday was a busy day with no nap & no school. I will nap her today. It has been one week since decreasing Trileptal. (This med takes 1-2 weeks to make a difference).

Wednesday, February 21st

Grace had one small seizure at 5:30 AM, so I sent her to school.

Thursday, February 22nd

Grace woke up holding her hand funny & limping. Caroline informed me that she had a seizure at 5:30 and then 6:30 AM. While I was helping Grace pick out her clothes for the day, she collapsed into a seizure in her bedroom. After being placed on the couch, she had a couple more seizures. When she finally became more alert, she stated she was hungry. I proceeded to feed her oatmeal. No sooner had she taken a bite that she started having another seizure. The stress of wondering if she had swallowed her oatmeal. Aspiration (of the oatmeal into her lungs) during a seizure would be TERRIBLE. I think this almost was the biggest close call of any of her seizures. Kids get severely mentally handicap with aspiration. Maybe I was overreacting, but luckily the seizure started after she swallowed her oatmeal. The rest of meal time was successful, with one more seizure in the bathroom on the toilet. Luckily, she had just walked into the bathroom and the lid was closed. Dave helped me get her to bed and she took a good nap.

Well, it is obvious that she is not getting enough meds at night to last her until morning since I changed her dose. I have to leave town today (plane to Denver for buying show), so I am waiting for a call from Neuro.

While I was driving, Neuro called. The plan is to increase Keppra. Grace has since stopped having seizures since her morning meds have kicked in. Keppra only takes 3 days to take effect, unlike to 1-2 weeks for Trileptal, so Grace should be pretty good by Saturday.

Keppra 1000 mg twice a day (new dose)
Trileptal 300 mg twice a day

Sunday, February 25th

Grace's seizures have stopped again. Last seizure was Friday morning, so she didn't go to school any day last week except Wednesday. I am just getting home from Denver and will be in SLC for a few days for nurse work.

Clarification about me- the mom

One of my friends pointed out that I never mentioned what my genetic testing results were. Sorry! I have known since the beginning of October that my genes do not have the mutation. So they do not have to do any more testing on any of my family members, mom, etc.

They recommend that Caroline be tested by the time she's 18 to rule out the gene. They said it's possible that she might have the mutated gene, since they don't know at what point in conception that it happened to Grace. Maybe something is wrong with my eggs. They know that Tommy doesn't have it for sure, because if he did he would be severely retarded.

Remember that the X chromosome is really long with lots of info. The Y is short. In girls, if they have a mutation, they can almost shut down the "bad" X and use the "good" X, so their symptoms are less. In a boy, with only one X, they have nothing to shutdown, so their symptoms are severe.

This is why it is important for Grace to do family planning when she is preparing to be childbearing. I believe she will have to do IVF to for sure not pass this down. How to teach her this principle is yet to be decided, but during different times in her life, we will have to prayerfully approach the issue and then not be bashful.

Thanks to everyone!

I have received a lot of phone calls and emails from many family members and friends since sending out my family photo card & letter. It has been great to receive so much support. I know we aren't the only family that has struggles, so thank you everyone for making it all good.

Thursday, January 04, 2007

No News is Pretty Good News

Well it has been months since my last blog. I guess that writing in a blog is as difficult as writing in a journal- easy to procrastinate and put at the bottom of my to-do list.

As more time passes with this illness, the more we've adapted and probably at some points become numb to what happens. Grace for sure is more stable. Her med doses still aren't perfect, but her behavior and safety regarding the seizures has been more stable.

The hardest part is instilling new behavior changes which requires our family to change as well. And as most people know, change is difficult. Let me recap the last couple of months.

October: The month of October was busy but pretty stable. It is a very busy time at the Lodge, and the kids were resilient and survived they're parents being unavailable a lot of the time. Grace did quite well during October. Her seizures were infrequent but still present. They still happened usually when school was out for the weekend. Other times, the seizures would increase when she had a really busy week at school with lots of demands at school and at home. I spent time talking with the PA who encouraged us to make more of an effort to stabilize our routine and decrease the stress at home and at school. Easier said than done, but we're trying.

Grace's Keppra dose was increased, so now she takes 750mg morning and night. The month's highlights were Grace's birthday on the 12th- she turned 9 and got to have 2 birthday celebrations. The other was Halloween where Grace was a purple Barbie Fairytopia and wore a purple satin dress that Grandma Van Dyke made for her.

November: Grace was officially enrolled in Special Education at the end of October. We made some plans with the school that will help her in some of her weak areas like test taking, reading comprehension & inference, and social skills. I took Grace & Tommy to Las Vegas to hang out with my sister April over the 2nd weekend (11/9-12). I think Grace needed the break away from the ranch and school.

One thing we assumed but learned for certainty is Grace is helped the most by her Keppra. She dropped a pill on the ground (Nov. 13) and didn't realize it. Dave found the pill the next day. Keppra takes 3 days to make a difference, and by Wednesday (day 3), Grace had a seizure at school. It was her first seizure at school which really caught the teachers off-guard but they handled it pretty well.

On Thanksgiving (11/23), Grace woke up with the stomach flu. She didn't get to have any Lodge dinner and was so sad. She ended up throwing up twice, the first right after she took her pills. This effected her the next week with a few seizures on 12/1, another Friday.

December: In September & October I spoke with the doctor about trying to reduce the dose of Trileptal which is the medication I don't think is as effective with Grace. She didn't really stop having seizures consistently until she was on the Keppra. The difficult thing is timing in trying to reduce her dose during a time that is not stressful since stress also seems to bring on seizures. So I decided to lower her dose of Trileptal, which I did on 11/28. She is now taking 150mg less every day, and appears to be doing really quite well. I am not ready yet to try to drop her dose again.

One thing we've also learned is that Grace does better when her meds are truly 12 hours apart. When she goes to the movie, she does better when she takes her meds prior to the movie (7:30) than when she goes to bed (10:15). The movie in this county only shows at one time, so if we go to the movies, it is definitely a late night for her.

Also this month, on 12/8, her meds were missed and not given until late in the afternoon. We eventually got her back on a schedule, but then she had some seizures 10 days later, morning and night. She also had seizures once we got to California after driving all night and again after driving home to Utah.

So, this is what I'm certain about: 1) Grace needs her meds 12 hours apart, and although she is compliant in swallowing her pills, you have to watch her take them because sometimes she drops the pills without noticing they don't get to her mouth. 2) Grace is also affected by not getting enough sleep, and if she starts having seizures, they can be stopped by increasing her frequency of taking naps and getting to bed before 8 PM. 3) She also seems to have seizures when she gets upset and yells, or when I get upset at her and yell. Sometimes I have her come home early with Tommy on the bus so she can nap better at home. 4) We also started doing backrubs at bedtime. Grace really likes this (as do the other kids). She does have a lot of knots in her back and neck, and when I rub them, she sleeps much better. I'm sure having seizures in addition to being a pretty rough & tough kid gives her lots of kinks.

Thursday, January 4, 2007: Grace didn't have any seizures last night after having seizures in the night since Sunday night. She is getting more sleep and settling back into her school routine. We try to listen for seizures by using the baby monitor, but Caroline is good at keep track. What I found out is that Caroline has been getting up in the night with Grace during her seizures, which is wiping Caroline out. So I've encourage Caroline to stay in bed and even though she might note the time, she doesn't have to sit with Grace during the seizure. They happen so quickly and only last 15-30 seconds usually and Grace is "out of it" while it's all happening.

I do need to weigh Grace and possibly call the doctor about whether her Keppra dose is high enough and report to him regarding how she is doing on the slightly lower dose of Trileptal. But I will wait until our routine is back to normal from the holidays.

I am also going to try and make a better effort to eliminate sugars from her diet and see if that makes a difference. Grace is definitely a boredom eater and will turn to sugary food when she is bored.

Regarding her behavior, Grace still acts out at times. This morning we discovered that she poked pinholes in pictures on Carolione's bulletin board. They share a room because Grace refuses to sleep alone. It might be time to separate their belongings, and although they might sleep in the same room, Caroline could have her belongings locked in a different room. Grace definitely doesn't respect boundaries. What's hers is hers, and what's everyone elses is hers as well.

Thursday, September 28, 2006

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.

Wednesday, July 26, 2006

Grace is improving

I can't believe another month has passed us by. We have been able to do a lot of family things and Grace is definitely stable.

When we visited the Dr.'s office at the end of June, the PA increased her dose again because she was still seizing. She now takes 450 mg twice a day of Trileptal. This is considered a high dose and if it needs to be increased again, she will have to have lab work to make sure everything looks okay.

This new dose seems to be working. We have had a few scary episodes, but for the most part she is stable. We went to Lake Powell July 9-12 where we camped and boated, so Grace didn't get as much rest as usual. She had some early morning seizures, but appeared to be doing well.

However, 2 days after the trip (July 14) she started having frequent seizures during her nap. An hour after her nap, she collapsed in the bathroom at the local pool with a seizure. I hadn't walked through the door yet and luckily Tommy came and got me. She faired well considering the floor was concrete and ended up with an abrasion/ "goose egg" above her left eye. She said she didn't have an "aura". I thought maybe she was so excited to swim that she ignored the dizziness.

Later that evening however, she fell again. This time it was in the kitchen on the wood floor right when I was about to give her medicine. There was no warning and she falls flat as a pancake in the blink of an eye. She didn't get hurt this time. When I called the on-call doctor, he suggested that she was probably dehydrated from being at the lake and swimming so much. So I "pushed fluids" all night with lots of watermelon and chocolate milk, and she didn't have anymore seizures.

The following Monday, July 17th, she started having them again in the morning. She had one when she was asleep at 6AM that was longer than usual. At 6:30 she was sitting at the computer playing games and just fell out of the chair. Then, a little bit later, she fell into my arms while I was combing her hair.

So I have come to this conclusion. The dose she is on is okay, but when she is sleep deprived, has a low blood sugar, is dehydrated, or a combination of the three, she starts having seizures. And that's where we're at right now.

Aside from the neuro, we have an appt with the geneticist August 23. We also have an appt with the new psychologist Sept 21 & 22 for more testing. No one is at the school, so we haven't started the special ed planning yet. School starts August 24.

On a positive note, Grace's behavior is improving in several areas. When Caroline is not home and Grace is the oldest, she has been more helpful and takes on more responsibility. It is really nice. She has been really trying. This week she watered the trees for her sister because Caroline was sewing at her grandma's house. I have been really trying to praise her lots and lots. Of course, there are still meltdowns but this other is good.

Monday, June 26, 2006

Dr. Check-up Cancelled

I can't believe how quickly the time goes by. We drove home from San Diego on Father's Day. Grace behaved pretty well considering how crowded we were in the car. We had a fun-filled week at the beach and with family while in Oceanside. It was warm and sunny which is always a plus for June.

Tuesday, June 20th, Dave and I took her to Richfield (1 hour away) to meet with the Neurologist. There are a group of doctors fly to rural areas within the state as part of an outreach program.

When we got there, we were informed that her doctor didn't come (they forgot to call us and let us know). I was frustrated (in a nice way) because had I know he wasn't coming, I wouldn't have waited a week to talk to tell him Grace is still having seizures. The Physician's Assistant finally called me back and they increased her dose to 375mg Trileptal 2 times a day. I will also take Grace to see the PA on June 29th.

While in Richfield, we spent a couple hours speaking with a Public Health Department Psychologist who thinks Grace isn't diagnosed entirely correct. He thinks that the ADHD is a misdiagnosis and wants to repeat some of the tests. I think retesting is common because most professionals don't want to really on someone else's test results. So we will probably follow-up with more testing with him.

In the meantime, we will contact the school regarding Special Ed and an IAP. The crazy thing about seeing these docs is most appear to be focused on making a diagnosis and can't give me concrete answers as to what the follow-up plan should be. I'm realizing that the follow-up plan is whatever I want it to be and the professionals will try and help us get there.

I went to girls' camp last Wed thru Saturday. Dave said Grace had a couple seizures during the night on a couple occasions. He said when she doesn't nap as well, she tends to have a seizure that evening. One time in San Diego, Grace was able to tell me she was going to have one. She later explained that the room spins and her vision goes blurry. It was reassuring to know that she can sense them if she's awake.

Since I've been home, she hasn't had any that I've noticed. We have a doctor's appointment in Salt Lake on Thursday. Hopefully we can get some answers regarding a future care plan/action plan for Grace. Till then, ttfn.

Monday, June 12, 2006

San Diego Vacation

Grace has been on her therapeutic dose of Trileptal for a little over 2 weeks now. We have a check-up in one week- Tues, June 20th. She has been in Oceanside since June 2nd and my mom said she has had some small seizures, mostly in the first few days she was there. She thought she hadn't had any seizures in the last few days.

I came in town yesterday. It has been 10 days since the kids left with my mom. I slept with Grace last night. She had two short seizures during the night and then she had one at breakfast. She hasn't had one during the day since about mid-May. I was on the couch but Christina noticed she was staring up at the ceiling. (We came to Chrissy's last night). I bolted to the table and caught her right when she started falling out of her chair.

It seems like she has seizures when she's done a lot during the day- lots of activities or stimulation. She took a nap yesterday, but I tried to take a nap with her today and I don't think she ever went to sleep. It also took me 45 minutes to get her to sleep tonight even though she wore herself out swimming this afternoon. I've decided that kids are never as cooperative with parents, especially when they've been "abandoned" for 10 days. I was pretty sure she would have one tonight which she just did. It was pretty short. I will have to continue keeping track so I can give the doctor feedback next week.

While writing this, I just heard a loud bang. Grace must have hit her head on the bunk bed by either having a seizure or something. After I put her back to bed, she had another little seizure. Now she's all smiley like she sometimes gets after seizures. This could be a long night.

Grace's Dilantin Rash Photos

Grace woke up with a rash and very full lips on Friday, May 12. She was having a medication allergy to the Dilantin which we discontinued.

Hospital Photo of Grace

May 4, Thursday, 2006. This was the only picture Grace would let me take of her while we were in the hospital. She is in her favorite wheelchair and she wanted to take those PJs home with her.

Saturday, May 27, 2006

They told us she has band heterotopia.

I am starting this blog to let family and friends know what has been happening in our family with regards to Grace. It has already been 4 weeks since this all began, so I will start from the beginning.

Saturday, April 29th, 4:00 AM: Grace woke us up crying, complaining of a headache. She has been on ADHD medication, Metadate CD for 4 weeks now and we wondered if the headache was a side effect. Grace kept crying despite a dose of Motrin and Tylenol, so I had her take a bath. (She loves baths.) She was so pale but did not have a fever and denied having an upset stomach. After a few minutes in the tub, she stood up and basically passed out in my arms. I carried her to my bed, checked her vitals, and called April. I was really worried- ask Josh and April.

After brainstorming what the problem could be, I later took Grace to the clinic to rule out any secondary problems. The doctor reported that he couldn't find anything wrong with her- no pressure on the brain, no sinus infection. We assumed she passed out because of low blood pressure from getting out of the bathtub and the headaches from her ADHD medication. (She had been complaining of headaches the previous couple of weeks.) We stopped her medication and waited.

Monday, May 1st, 10:00 PM: Grace had a very rough weekend. She was very difficult to control. Her teacher reported that she was withdrawn at school and not herself. I spoke with the pediatrician who thought she might have a virus and didn't believe the Metadate was still in her system when she woke up with a headache. I was nervous when I put her to bed because she didn't seem well. I had Dave and his dad give her a blessing at 9:30 PM.

At 10:00, Caroline came to me and said Grace was shaking and breathing funny. When I went to her room, her breathing was really different and her arms were kind of pulsing at her side. At the time, I wasn't even thinking "seizure". Her breathing made me think that maybe she had a sleeping disorder like sleep apnea. While I watched her breath, she had several periods of apnea. Later that night, I spent a couple of hours brainstorming with my dad as to what might be causing this behavior change.

Tuesday, May 2nd, 6:30 AM: Grace's seizing body woke me up this morning. I didn't know she had gotten in my bed during the night. The seizure was long, 2-3 minutes. Her eyes were closed but her extremities were shaking and she wasn't breathing well. It was definitely tonic-clonic and lasted long enough that I assumed it was a grand mal seizure. It was fairly dramatic, but I think we were able to stay calm, considering. After the seizure, she was cool and clammy and stayed asleep. This post-tictal state lasted about 30 minutes. Then Grace woke up and complained of a huge headache in her forehead. She was so pale. Now it all started to make sense- for some reason Grace had started having seizures.

I called April and my dad to update them, packed and headed to Salt Lake for Primary Children's. I took a water sample, to be anayzed, along the way. We felt we needed to explore every avenue in hopes of finding out the cause of her seizures.

Grace and I arrived at the hospital around 3:30 PM, Tuesday. We waited in the Emergency Department for a couple of hours. They wouldn't let her eat or drink which was a nightmare. After an EKG and CT scan, I was informed that her CT scan was abnormal. They said it wasn't a tumor but more of a birth anomally. She was scheduled for an MRI on Wednesday and a Neuro consult. Luckily, they were admitting us to the Rapid Treatment Unit overnight for observation. I guess normally we would have been sent home if we lived in Salt Lake and followed up with a neurologist several days later. After a late dinner and bath, Grace is asleep, only to wake up in the middle of the night wanting to watch T.V. After trying to reason with her from 2:00 AM to almost 5:00 AM, I finally went to asleep, VERY FRUSTRATED to say the least.

Wednesday, May 3, 6:00 AM: I woke up to the pulse oximeter alarming. Grace was in the middle of having a seizure. The nursing staff came running in at the same time. Seconds after that, the ER team came running in and sort of ran a mini code. They started an IV, drew some labs, and ordered some meds. Grace was given a large dose of Dilantin to prevent further seizures. When she woke up a little later from the seizure, she was like an drunken sailor. She couldn't really walk and slurred her words. We went to MRI and they didn't have to sedate Grace. She was so cooperative which was amazing because the noise of the machine stressed me out. I'm sure the Dilantin in her bloodstream helped.

After the MRI, Grace was allowed to eat again. She was obsessed with Chicken Noodle Soup the entire day. I think she had 4 or 5 bowls plus Cup of Noodles twice by the next morning. Later Wednesday morning, we were admitted to the Neuro Unit and changed rooms. Grace's second obsession during our hospital stay was wheelchairs. She always wanted to be in a wheelchair. Grace hated her IV heplock however and the pulse oximeter probe on her finger. She must of asked 1,000 times when they could be removed. Lastly, she was obsessed with having her nails and toes painted. She had been wanting to do this since Monday night and I had promised her that on Tuesday morning I would paint them before school. Well, now that it was Wednesday, she was needing some serious polish. More on that later. :-)

Later Wednesday, the Neurologist consulted with us and explained that her MRI explained everything. She was given the diagnosis, Band Heterotopia. Apparently, she has had this problem since birth. This "disorder" causes seizures and learning delays. The doctor could not explain why the seizures had just started. He said sometimes the kids are older and sometimes they're younger, but she would have eventually started having seizures.

BAND HETEROTOPIA: At this point, this is my understanding of her diagnosis. In utero, the baby's brain develops and the gray matter travels to a specific spot in the brain. In Grace's case, some of the gray matter didn't migrate properly. In her brain, there is a crossover of some of the gray and white matter which creates the look of a band around her brain (in her brain.) This mixture of gray and white (neurons) causes seizures and learning delays. It is usually genetic, from the X chromosome of the Mother (me). So I could have it and not have any symptoms.

The heterotopia has been there since birth and if by chance she had an MRI when she was born, they could have seen the band. Supposedly, this stays unchanged in the brain. It is not curable. It is treatable. It will not get worse. The ideal treatment is a medication to prevent seizures and psychological follow-through to help with the learning problems. If she is seizure free for 3 months she can have a driver's license. (I'm thinking ahead.) She is also supposed to have genetic follow-up/counseling to see if they can isolate the mutated gene. (Her blood is currently being tested in Chicago.)

Wednesday afternoon was spent having an EEG where they placed little wires all over her head and had her do exercises and try to sleep. The computer screen showed tracings like an EKG. We also were successful with our quest for nail polish thanks to very prepared therapists that let her choose AND keep 2 colors. That evening was spent with visitors and a wild Grace. She continued with her obsessions- Chicken Noodle Soup, wheelchairs, her IV site, and pulse oximeter probe. No more doctors until Thursday. I bathed her and put her to bed.

Thursday, May 4, 7:30 AM: Grace seems more normal today when she woke up, but that didn't last very long. Once all of the doctors started to visit, she got pretty silly again. I now understand that her behavior was probably a combination of of the dilantin plus anxiety with everything going on. We saw a lot of people- several neurologists including residents and med students, a geneticist, a psychiatrist, physical therapy, occupational therapy, a social worker, and the education specialist. I got lots of helpful but sometimes overwhelming information. It seems like the most difficult part of the road ahead will be the psychological because of her learning disorder and ADHD which then causes anxiety and the difficult behavior. We shall see.

We were discharged by 4:30 with a prescription for Dilantin twice a day. The plan was to switch to a new med at the end of the month and follow-up with the neurologist mid-June. I definitely was at my wits end by discharge. Grace spent the day overwhelming me with her actions including trying to wheel herself up and down the hallway in the wheelchair running into walls, getting stuck in doorways, etc. It sounds funny now, but it was SO draining at the time.

We drove straight home in hopes of making it to the school Spring Festival. We were late and Grace missed her part, but she was a good sport and everyone was happy to see her.

Monday, May 8, 3:45 PM: Grace went to school today. We survived the weekend, mostly because she spent most of the time with her grandparents. It was a really busy weekend at the Lodge. She has school testing this week. I'm not sure how well she'll do, but there's not much else we can do. We haven't been able to do very much school work with her because she has a difficult time thinking. It's like she can't remember how to do it anymore. The medicine has changed her personality; she's not as happy and somewhat withdrawn. I hope this changes when we switch meds. It's like someone took the old Grace in the night and replaced her with a different girl. It makes me sad thinking about it.

Wednesday, May 10, 8:00 AM: My mom flew in yesterday and drove down with Dave. She wants to help watch Grace so I can get caught up on EVERTHING. I hope it works! ;-)

Thursday, May 11, 5:00 PM: I picked Grace up at school today and took her to Richfield for a blood draw. The doctors want her Dilantin level checked. On the way, Grace showed me a rash she had on her thighs. It definitely looked like hives but I could only see them on her thighs and wrists. She was wearing a new outfit, so I assumed she was irritated to the fabric. I gave her some Benadryl and headed for the hospital.

It took 3 people to hold Grace down for the blood draw. She let them draw her blood without flinching at Primary Children's until the last day when the nurse told her so far in advance that she was traumatized by the time lab showed up. She actually was reasonable today, considering how scared she was. Luckily, there's a McDonalds in Richfield, so we spent the next hour in the playland.

At bedtime, Grace still had her rash. It was a little lighter than it was earlier, but still making her itch. Hopefully the second dose of Benadryl will do the trick.

Friday, May 12, 7:00 AM: Grace's rash is worse today. It is everywhere and her lips look a little more like Angelina Jolie. She says her throat doesn't bother her, but I'm thinking she's having a drug allergy. I spent most of the morning trying to get in touch with her doctors. I found out that her Dilantin level was 33 and therapeutic in kids should be under 20. I held her Dilantin and took her to the clinic. Dr. Chappell confirmed that she was likely having a drug allergy, not just a side effect from the Dilantin. We waited most of the day for more information from the neurologist as to what he wanted us to do. The on-call doctor wanted us to stop the Dilantin for good and start the new medication when her rash was gone.

Monday, May 15, 5:00 PM: I finally was able to get in touch with Grace's neurologist today. I didn't start her new medication, Trileptal because I wanted to make sure he was on the "same page" as the on-call neurologist as to what was going on. He said that he was concerned that Grace would have a 30% chance of being allergic to Trileptal since she had developed a rash with Dilantin. He wanted us to wait 2 weeks before starting the new med which would decrease her chances of becoming allergic. He explained that she might have seizures but hoped she wouldn't.

Monday, May 15, 10:00 PM: The kids went to bed later than usual tonight. I was in the kitchen and thought I heard someone crying. When I went in Grace's room, she was having a seizure. The seizure lasted several minutes followed by a post tictal phase of crying, moaning, and rolling around the bed. It was stressful watching it happen and not really being able to do anything about it. Dave had his dad come up. We had a family prayer, and then they gave her another blessing. I called the on-call neurologist to discuss the seizure. We didn't have any emergency medicine with us to stop the seizure if she had one that lasted 5 minutes or longer. The local ambulance didn't have the right kind either and if they were called, they would have to start an IV. We prayed she wouldn't have another seizure tonight, and she didn't. She spent the rest of the night in our bed.

Tuesday, May 16, 7:30 AM: Grace woke up happy this morning with no memory of what took place last night. She didn't complain of any headaches, so I sent her to school. I spent most of the day talking with the on-call doctor because our regular doctor wasn't in town. Lucky for us, Denise was in St. George and was able to locate the emergency drug for Grace. Otherwise, we would have had to drive to Salt Lake. The emergency drug is a gel form of Valium that is given rectally if the seizure lasts 5 minutes or longer. Then we were to call 911. I felt more prepared when I went to bed that night.

Wednesday, May 17, 1:30 AM: My mom called down to us because Grace was having a seizure. My mom had been sleeping in the same room as Grace. I timed the seizure and it ended just seconds before 5 minutes, so we didn't have to give her the Diastat. Thank goodness! But, this was again another tough seizure on Grace. This time, it caused her to wet the bed. She then cried and wailed off and on for the next 1 1/2 hours. I could not console her which was upsetting to everyone. It was definitely one of the most stressful nights since this all began.

Wednesday, May 17, Noon: Grace was so tired this morning and then went down for a nap. When I got out of the shower, I heard a noise and found Grace in the middle of another long seizure, about 4 minutes. It caused her to wet the bed again but didn't cause as much agitation and she didn't cry as long. By late afternoon, I was finally able to speak with her neurologist. He explained that he wanted her to start the Trileptal this evening. Unfortunately, the medicine won't be stable in her body for another 2 weeks, so she might still have seizures. We will watch and wait.

Sunday, May 21, 5:40 AM: I woke to Grace having a seizure. It lasted a couple of minutes which was shorter than Wednesday's, but she wet the bed again. She didn't cry afterward which was better than earlier in the week. After cleaning up the bed, I went back to sleep. Grace was never "awake" during any of it. It had been 4 days since her last seizures.

Sunday, May 21, 8:15 AM: I woke up again to Caroline yelling for me. Grace had a seizure just as she was starting to eat breakfast. Caroline was holding her head up and basically keeping her from falling out of the chair. This was the first time Grace had a seizure while she was awake. I carried her to the couch where she slept it off. The seizures have been a little shorter, and we haven't had to use the emergency medicine. I knew the seizures were a possibility, so I didn't call the doctor.

Sunday, May 21, 1:30 PM: Grace had a seizure minutes after she laid down for a nap. It lasted 3-4 minutes, but she didn't wet the bed.

Monday, May 22, 6:00 AM: Grace had a total of 14 seizures last night. They came every 15-20 minutes until the middle of the night. Her first one started at 7:10 PM. It was a long night. She looks so distorted during her seizure that it breaks our hearts. I think lucky for her, she has no memory of any of it.

Friday, May 26, 5:00 PM: Grace has had seizures off and on during the week. She missed most of her classes this week. She made it to the school hike and the last day of school. I called her doctor again today. I tried earlier this week but he was out of town. Wednesday night she had another round of multiple seizures during the night like Sunday night. He said that we should increase her dose to 300 mg twice a day starting tonight, even though she has only been on the medication 9 days (not the ideal 14 days.) He said it would still take 1-2 weeks for the seizures to subside.

Friday, June 2, 7:00 AM: I just put my mom and my 3 kids on a plane to San Diego. Since Grace is more stable with her new dose, my mom wanted to take them, so I can get caught up on some things before I drive down. My sis, Chrissy will watch Tommy since he is the same age as her son Alex. Caroline will stay at her cousin Guy's house since they are the same age. Grace will stay at my parents. Hopefully it will all work out! :-)