Friday, March 16, 2007
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.
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.
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.
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.
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.
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