Current Depakote Level

Nurse Cindy called from Dr. Dean's office a few minutes ago. She stated that Scott's Depakote level is currently 63.7. (You may recall that it needs to be between 80 and 100 to be completely effective.) Cindy also stated that they expect this level to continue to increase - especially since Scott's dosage was just increased (on 10/8/08) and that it takes 60 hours for it to increase in his system. We pray that as the level increases, Scott's seizures will subside.

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.

Restful Wednesday

Scott had a restful, seizure-free day today. He spoke with Dr. Dean this afternoon about his most recent seizure activity and inquired as to whether or not he should increase his Depakote Sprinkle dosage. Dr. Dean advised Scott that he should increase the medication to 375 mg twice a day. (He was taking 250 mg twice a day.) Hopefully this increase dosage is exactly what Scott needs to stay seizure-free for a very long time!

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.

Back Home... FINALLY

Dr. Dean finally arrived at the hospital at 8:00 pm this evening to release Scott. After an hour of processing the necessary paperwork and getting another dose of Depacon via IV, we were on our way home. (YEAH!!)

Dr. Dean prescribed Depakote Sprinkle (125 mg) capsules for Scott. He will be taking 2 capsules in the morning and 2 in the evening. Scott will also continue to take Keppra - although on a slightly different schedule. He will now take 1125 mg in the morning and evening as opposed to 750 mg three times a day.

Please pray that the Depakote Sprinkle and the Keppra are the correct meds, that the dosages prescribed are just the right amount and that Scott's increased seizure activity will finally come to an end.

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

Update

I just spoke with Dr. Dean. In light of Scott's recent seizure activity, she is going to start him back on a low dose of Depacon (125 mg) via IV. I explained Scott's lack of rest this morning and told Dr. Dean about how his eyes continued to move - even though his eyelids were closed. She explained that this was due to seizure activity. Hopefully this low dose of Depacon will be the answer... only time will tell. Needless to say, Scott will not be returning home this evening. Please continue to keep him in your thoughts and prayers.

Thanks everyone!
Christa

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

Homeward Bound...

Scott was able to get a very good night's sleep last night. He has been up since breakfast this morning and seems more like himself today. Dr. Dean just dropped by to check in on him. She told Scott that she was happy with his progress and wanted him to start walking around today to get his strength back. She has also taken him completely off of Depacon. (Today is his first day without it.) Dr. Dean stated that if Scott continues to do well today, she may let him go home tomorrow. (YIPEE!!) Hopefully tomorrow at this time I will be posting to let everyone know that we are on our way home.

An Eventful but Seizure-Free Night

Scott had an eventful but seizure-free night at the hospital last night. The poor thing has been poked and prodded today. He is on oxygen, has two IVs - one for fluids and one for meds, is hooked up to a heart monitor, and was just hooked up for a sleep EEG. Dr. Dean is continuing to reduce his Depakote ER intake. (While here in the hospital, Dr. Dean is giving Scott Depacon instead of Depakote ER.) Hopefully he can get some much needed rest this evening. I'll continue to post updates on his progress.

Thanks again for all of the phone calls, emails, visits and meals. It is wonderful to have such loving and supportive friends and family. We love and thank you all!

Christa

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.

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.

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

New Drugs

I visited Dr. Dean today. She showed Christa and I a detailed analysis of the EEG report. It appears that my brain-wave patters have changed some since the last time I had an EEG. Some noticeable things were that the flashing lights produced some seizure activity in certain HZ ranges (no more Pokemon Videos for me!) I have not had seizure activity during this part of the test before. Another interesting development was that there are some intense sections of Polly-Spike-Waves (bad seizure activity) during certain sleep portions. Doc says that the seizures I am having are related to sleep deprivation caused by my mind not fully entering certain stages of sleep - thereby increasing the Polly-Spike-Wave activity even during awake and sleep.

So... she has recommended that I try adding Depakote ER to my drug regimen and remove Lamictal. I plan to start that this week. It will take several more weeks before I have made the transition. I so hope that this will work!