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.

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.

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.

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.

Meeting with Dr. Sollenberger

While in the hospital many of the tests taken showed that Scott's thyroid was overproductive. Once discharged from the hospital, Dr. Dean scheduled an appointment for Scott to meet with an endocrinologist to review these test results and to see what treatment, if any, is needed. Scott met with Dr. Sollenberger at The Salem Center this afternoon. Dr. Sollenberger told us that Scott's test results were up and down throughout both stays in the hospital. He further explained that he is not entirely sure if this is a result of the number of seizures Scott endured or if Scott truly has hyperthyroidism. But Dr. Sollenberger did point out that hyperthyroidism is not common in men and especially not in those whose family have no history of the disease. (As far as we know, no one in Scott's family has ever been disgnosed with hyperthyroidism.) Based on the previous test results, Dr. Sollenberger decided to order a blood test to get a current reading of Scott's triiodothyronine (T3) and thyroxine (T4) thyroid hormone levels. He stated that if he found an abnormality in these results then we would start Scott on medication. He also explained that this medication would not counteract with Scott's AEDs. We expect to hear the results from the blood test within the next day or two. I'll update everyone once we hear back from Dr. Sollenberger's office.

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.

Back to Work

Scott spoke with Dr. Dean today about returning to work part-time. She has agreed that he could return for 4 hours a day and suggested that he start back tomorrow. Dr. Dean explained that she wanted to ensure that Scott had plenty of time to rest over the weekend - just in case he is really tired after working 4 hours tomorrow. She has also scheduled a follow-up visit with Scott for tomorrow afternoon. Hopefully he won't be too tired after work and the appointment!

Starting into week 2!

I am now a day and a half into week 2 being home from the hospital. Unfortunately, my strength is still not up to full, so I have been taking morning or afternoon naps to compensate. Hopefully it won't take long to get back to the point where I can make it through the day without extra rest.

7 Days

I have now made it seven days since the last seizure. Great news! Hopefully the rest I am getting at home is helping.

Brain Mapping

I went in for an appointment with Dr. Robeson today. We did not get to the brain mapping portion of the appointment due to lack of time, so it has been re-scheduled for October.

Still no seizures. Crossing my fingers.

Another Great Day

Scott had another restful, seizure-free day today. He continues to take a mid-morning and mid-afternoon nap but seems to be more like himself again for which I am very grateful!

The stress management appointment went well today. We discussed stress management in general, identified stress relievers for both Scott and myself, and reviewed a breathing technique to help reduce stress. Scott and I are going to try to put some things in place to help reduce the stress that the recent events have caused.

Scott has an appointment Wednesday morning with Dr. Robeson for the brain mapping session. I'll keep you updated and let you know how that appointment goes as well.

Thanks again everyone!
Christa

Stress Management

Dr. Dean just called. She wanted to let us know that Scott and I have an appointment to meet with Jacqueline Walker at the Epilepsy Institute to discuss stress management and review some breathing techniques. Dr. Dean feels that this is an essential part of Scott's treatment - especially after the stress endured from the past two weeks.

Seizure-Free for the Second Day

Scott has remained seizure-free again today. We are very grateful to have had two straight days without seizures. Scott continues to rest as he remains a bit tired. That is to be expected after being in the hospital for nearly two weeks and from suffering from numerous seizures throughout the 2-week period.

Thanks to everyone for your many emails, phone calls and words of encouragement!
Christa

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

A Good Morning Thus Far

Scott has had a very good morning thus far. He has eaten breakfast, has taken TWO walks around the 9th floor here at the hospital and is anxious to speak with Dr. Dean about going home today. Keep your fingers crossed that Scott will get his wish!

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.