CURE for Epilepsy

OK, I haven't been here for a while, but really needed to point out the following. If you've been over to Federal Review to read my rants and Emeriol's reasoned discourse, then you know I'm a strong conservative and consistent supporter of Republicans. But I took extra joy in Sarah Palin's potential focus on "special needs" children as Vice President - because, after all, children with epilepsy not only have special needs in education and other matters, they have needs that vary so widely, some serious education or awareness-raisin' is needed. In any case, among my other disappointments on November 4, I was sad that Mrs. Palin would not have the opportunity to bring this issue to the debate in Washington.

But guess what. A reason for hope that the Obama Administration may even have some reason for focus directly on epilepsy itself. My lovely wife pointed out this video to me because she noticed the banner behind Mr. Obama and he roasted his new Chief of Staff Rahm Emmanuel.

For several years now, I have had this logo and link at the bottom of my page on Federal Review.



Guess who founded and runs this organization? Susan Axelrod, the wife of Barack Obama's campaign manager, David Axelrod. There's some good news. And while my 8-year old has had only one seizure since June 2007, the EEG is still not settled and others, such as Federal Review's own Emeriol, continue to fight seizures. I'm pleased that someone concerned about epilepsy research will have the new President's ear. And that's some wealth redistribution I can get behind.

This graphic from the CURE site shows how the Epilepsy Lobby (if there is one) has been very ineffective. You know you have a PR problem when a much larger number of afflicted are seeing much less comparative research investment. Perhaps that's about to change.

Crossposted on FederalReview.

Brain mapping...

Yesterday I did some brain mapping at the Institute. It went well, but I was pretty tired by the end. Next week I have another appointment scheduled with Dr. Dean. Hopefullly she will write me back to work part time. I am getting a bit stir-crazy. :)

No seizures today! :)

I had another good day with no seizures. :)

Doing Well

Nine days no seizures! :)

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