Petite Mal Seizure

I started getting hot while eating lunch today and had a short petite mal seizure. I quickly activated my VNS, drank some cold soda, and took off my coat. I am feeling better now. I had not taken my lunch meds yet, so I took those too.

Another Intense Gran-Mal Seizure

Scott had another intense gran-mal seizure this morning at approx. 12:45 am. Fortunately he did not fall out of bed or injure himself. This seizure lasted a bit longer than his usual tonic clonic seizures - it lasted a full 5 minutes. During the seizure, Scott let out an excruciating howl as if he were in intense pain. I swiped his VNS magnet several times both during and after the seizure. Nevertheless, Scott did stop breathing after taking several deep, jagged breaths. Swiping the magnet also did not seem to help with the recovery time as it was almost an hour before Scott could speak clearly or answer even the most simple questions. Scott has been resting peacefully since the seizure. I will have to wake him shortly to take his medications and eat breakfast. Please pray that Scott will have a peaceful, seizure-free day.

Results from Thyroid Test

I just heard back from Dr. Sollenberger's office. Scott's blood test showed that his thyroid levels are a little low so they are going to start him on medication today. Scott has a follow-up appointment with Dr. Sollenberger in early December.

Scott had one simple partial seizure at approx. 11:30 this morning. He was sitting at the kitchen table eating a sandwich and drinking some juice. He is in bed and is resting now. I'll continue to keep you posted.

Thanks,
Christa

Twice in One Day

Scott had another gran-mal seizure at approx. 7:55 pm this evening. He was on the phone with his brother at the time. (Sorry Matt!) Just like the seizure from earlier today, this seizure did not last long - only two minutes - and it did not take Scott long to recover. Fortunately, I was able to swipe his VNS magnet so he never stopped breathing. Unfortunately, Scott hit his already sore and bruised elbow during the seizure.

Again, we're not sure what caused the seizure. (Scott ate dinner and took his medicine at 6:00 pm this evening. He also took a nap once we returned home from his doctor appointment this afternoon.)

Scott is in bed resting comfortably now. I pray that this is the last seizure he has to endure for a very long time.

Another Gran Mal Seizure

Scott had another gran-mal seizure this morning at approx. 10:30. He was at his father's house at the time and was playing Civilization on his Nintendo DS. This seizure only lasted a minute or so and did not take Scott long to recover. (Thank goodness!)

I called Dr. Dean and scheduled an appointment to have Scott's blood levels checked this afternoon. I specifically want to see how much Depakote is in his system. (Dr. Dean had previously explained that you have to maintain a level of 80 - 100 for the drug to be compleetly effective.) Perhaps this will help to shed some light on this recent flurry of seizure activity.

Another Seizure

Scott had another gran-mal, tonic clonic seizure this evening at 6:15 pm - just as I was serving dinner. He banged his neck, back and elbows pretty badly during the seizure. He also stopped breathing even though I swiped his VNS magnet twice. In fact, he turned blue and ended up flat on his back once he stopped seizing. As much as I tried, I could not get Scott turned onto his side to clear his airway. So I called his father who lives down the road and asked him to come and help me. (Thanks Bob!)

It took Scott a fairly long time to recover from this seizure. We're not sure if this lastest round of seizures is due from sleep deprivation (Scott was not able to take a nap until 4:00 pm this afternoon) or if he just needs a bit more Depakote Sprinkle to sustain him until he takes his next dose of medicine. (Both of the seizures Scott has had this week have occurred just before he ate and took his medication.)

Scott is going to stay home tomorrow, and perhaps the rest of this week, to get plenty of rest. He is also going to contact Dr. Dean to see if he should increase his intake of Depakote Sprinkle. I'll post again tomorrow to let everyone know what Dr. Dean says.

Please continue to keep Scott in your thoughts and prayers.

Another Gran Mal Seizure

Scott has a gran-mal seizure this morning at approx. 8:30 - just as we were getting ready to leave for work. He had not yet taken his morning medication as we had planned to stop and grab a biscuit before heading in to the office. Not sure if that had anything to do with the cause of the seizure. (He usually takes his morning medication between 8:30 and 9:00.)

Thankfully Scott did not injure himself; however, he does have the usual aches and pains (i.e. headache, neck pain and body aches). He has rested for most of the day and is hoping to return to work tomorrow morning.

Going Home and the Removal of Lyrica

I spoke with Dr. Dean a little while ago. I explained that the nurses here are terrified when Scott has a seizure and that they really aren't helpful to me or Scott. I told Dr. Dean that I thought it would be best to let Scott go home. I even explained that we would bring Scott in each day for blood work if she wanted.

I also told Dr. Dean that as soon as Scott received his Keppra and Lyrica this morning he again got very tired and started having some small seizures right after he laid down to rest. I told Dr. Dean that based on my observations I believe that Scott should be removed from Lyrica.

Dr. Dean agreed on both counts. So we're waiting on her to come up here so Scott can go home. Before releasing him, she wants to work with us to develop a plan. We are both of the opinion that the Depacon is working. At least he seems to be calm and able to rest once he's had it. Of course, it's through an IV so we need to figure out the correct equivalent of Depakote - the oral version.

Hopefully if we remove the Lyrica and get the correct amount of Depakote Scott won't suffer any more seizures.

We are going to re-schedule the brain mapping session for Scott. He's reacted oddly to some situations and we need to figure out if it's due to the frontal area of his brain where he had the growth removed. That will better help us develop a plan for dealing with Scott's epilepsy and the treatment of it. We also want to discuss our options with the nerosurgeon after the mapping session. He previously stated that scar tissue is "very tricky". Maybe we'll have some options once we better understand how it's affecting Scott. I'll continue to post here as I learn more.

Thanks again for your love, encouragement and support!
Christa

One Rough Friday Evening

Scott had a very rough time in the hospital this evening. He had a total of 3 gran-mal seizures and at least 15 simple partial seizures:

7:00 pm - 8:45 pm - 10 Simple Partial Seizures
8:45 pm - Gran-mal Seizure
9:00 pm - 10:00 pm - 5 Simple Partial Seizures
10:10 pm - Gran-mal Seizure
10:20 pm - Gran-mal Seizure

Each seizure only lasted a few minutes but the number of seizures Scott endured over the very short time frame is quite disturbing.

And Another Gran Mal Seizure Just Before Lunch

Scott had a gran mal seizure at 11:55 am this morning. He had been trying to rest ever since breakfast this morning. But it was obvious from watching him that he was not resting well. His eyes, while closed, continuously roamed as though he were watching someone walk back and forth across the room - even though the only person in the room (besides Scott of course!) was me and I was sitting right beside of his bed. Right before the seizure Scott looked at me and told me that he was having very strange dreams about the end of the world. I teasingly asked if he was dreaming about Stars Wars again... at first he said no but then he stated that there was a bit of Star Wars in his dreams.

After the seizure, Hope, Scott's nurse today, gave him a shot of Ativan. Scott is resting at the moment and his eyes are no longer roaming. While Scott did not injure himself during the seizure, I sincerely hope that he did not injure his remaining IV site. After his first seizure yesterday, one of his IVs had to be removed because his arm had begun to swell and was very red. I know hoe much Scott hates being stuck with a needle and sincerely pray that this remianing IV will not need to be replaced.

I'm anxiously awaiting Dr. Dean's visit today. I want to speak to her about Scott's meds and get her thoughts on this recent flurry of seizure activity. Perhaps we made a mistake taking him off the Depakote. Or perhaps it's the Lyrica causing the seizures. I'm not sure how to tell but know that we must do something to help Scott. I'll continue to keep you updated. As always, thank you for your continue support and prayers.

Christa

Another Gran Mal Before Turning In for the Evening

Scott had another gran mal this evening at 9:35 - just before turning in for the night. He was watching Good Will Hunting at the time of the seizure. As with the previous seizure, this one only lasted a few minutes. The nurse gave Scott a shot of Ativan. He is resting now and will, hopefully, have a good night's sleep.

One Step Back?

Scott had a gran mal seizure at 3:25 this afternoon. The seizure only lasted 2 minutes or so. Scott is resting comfortably now.

We're not yet sure of what this will mean for his proposed return home tomorrow. Once we speak with Dr. Dean I will update everyone.

Simple Partial Seizure

Scott complained of having a simple partial seizure at 2:37 pm today. I immediately swiped his VNS magnet and so far everything seems ok.

Back to the Hospital...

Scott and I have just returned from Dr. Dean's office. He was unable to meet with Dr. Robeson for the "mapping" session because he was so tired from the three seizures. However, Dr. Dean decided to have another EEG performed. The procedure ran for a little over two hours and Dr. Dean stated that it looked better than the one taken last week.

While at Dr. Dean's office this afternoon, Scott had several simple partial seizures. Based on the fact that Scott has had 7 seizures since being released from the hospital last Friday, Dr. Dean has decided to re-admit Scott into the hospital. She has also decided to take Scott off of Depakote ER.

So, we'll be heading back to hospital shortly. Please say a prayer that the removal of the Depakote ER will halt his seizures and that Scott can return home, seizure-free, soon.

Three in a Row....

Scott had another three gran mal seizures this morning. One at 4:45 am, another at 7:45 am and a third one at 8:55 am. He fell out of bed during the second seizure and fell onto the marble floor in our bathroom during the third seizure. His neck and back are quite sore.

We head to Dr. Dean's office in a few minutes. Hopefully eliminating one of his AEDs will reduce, if not completely eliminate, his seizures. I'll post another update once we return from Dr. Dean's office.

Still More Seizures

Scott had another seizure at 1:00 am this morning. He also had several simple partial seizures this evening while eating dinner. Scott has continued to rest for most of the day. We are anxiously awaiting the meeting with Dr. Dean and are extremely hopeful that the elimination of one AED will be the answer we are praying for.

Another Day... Another Seizure

Scott had another gran mal (or tonic-clonic) seizure today just before 12:00 pm. Fortunately, he was resting in bed at the time of the seizure and did not get hurt. Perhaps the increase in Depakote ER or the new medication, Lyrica, is the cause of this seizure. Hopefully, we will know something more certain when we meet with Dr. Dean on Monday to discuss Scott's drug regimine. No one, including Dr. Dean, wants Scott to take 3 AEDs so the meeting on Monday will provide Scott and Dr. Dean with an opportunity to discuss and determine which medications Scott will continue to take and which one he will stop taking. Please say a prayer that Scott and Dr. Dean make the right decision for his care.

At home... but not quite seizure-free

We arrived home this evening around 6:30 pm. It was so nice to see the huge smile on Scott's face as he played with Otto and Katze, our dog and cat. Unfortunately, just before turning in for the night, Scott had a petit-mal seizure (also known as an Absence seizure) that lasted for only a few seconds. We're not sure of what brought the seizure on... perhaps the excitement of returning home or not enough rest today. Anyway, I am sooo grateful that Scott is in bed now and seems to be resting comfortably.

Another Seizure

Scott just had another tonic-clonic seizure a few minutes ago. It happened just as the telephone was ringing. The seizure only lasted two minutes and while Scott did take several jagged breaths, he did not stop breathing. Scott's nurse, Tracey, just gave him a shot of Ativan and he is resting now.

Severe Seizure sends Scott to the Hospital

Scott had a severe tonic-clonic seizure at 4:00 this morning. This seizure included many "firsts" which I have noted below:

1) The seizure lasted a full 45 minutes. This is very unusual as Scott's seizures usually last fewer than 5 minutes.

2) During the seizure, Scott let out an excruciating howl as if he were in intense pain. In the many seizures I have witnessed, I have never hear Scott make this sound.

3) Scott's legs were rigid throughout the seizure. I found this to be unusual because Scott's legs are usually bent as his usual tendancy is to collapse just before the clonic phase of the seizure begins.

4) Once the clonic phase of the seizure ended, Scott took several deep, jagged breaths and stopped breathing - which is usual for him. What happened next, however, is unusual. Usually Scott returns to normal breathing. However, this morning he again took several deep, jagged breaths.

5) It took Scott an hour after the seizure ended to recover and answer even the simplest of questions - even though I swiped his VNS magnet 4 different times over the course of 1 hour and 45 minutes. This is quite unusual as Scott normally recovers quickly and can answer very simple questions after only a few minutes.

We are not sure what triggered this seizure. Scott had eaten well the day before and had taken his medication on time. He did not seem stressed, worried or upset about anything. He was a bit tired last night and went to bed at 10:30 pm but he was sleeping peacefully when I turned in at 11:00 pm. Perhaps Scott is still not sleeping well or getting the much needed rest he needs. Or maybe it was caused by the Depakote ER he started taking 3 months ago. Or maybe still the seizure was the result of the Lamictal leaving his system. (Scott had been reducing his Lamictal intake over the past 2-1/2 months and completely stopped taking Lamictal approx. 2 weeks ago.)

I called The Epilepsy Institute at 8:00 am this morning and requested that Scott be seen. We arrived there shortly before 10:00 am so that Scott could have an EEG performed. Nurse Cindy also took several vials of blood to see what they could tell us. While we were in the office, Dr. Dean called from the hospital where she was making her rounds and stated that she wanted Scott admitted to the hospital for observation and further testing. At this time, we believe that Scott will remain in the hospital until the end of the week. I'll continue to post updates on his condition.

As always, thank you for your love and support.
Christa