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.