Monday, November 10, 2008

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.

Thursday, October 30, 2008

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. :)

Tuesday, October 28, 2008

No seizures today! :)

I had another good day with no seizures. :)

Saturday, October 25, 2008

Saturday, October 11, 2008

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.

Friday, October 10, 2008

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.


Thursday, October 09, 2008

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.

Wednesday, October 08, 2008

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!

Tuesday, October 07, 2008

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.

Monday, October 06, 2008

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.

Thursday, October 02, 2008

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!

Tuesday, September 30, 2008

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.

Friday, September 26, 2008

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.

Wednesday, September 24, 2008

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.

Monday, September 22, 2008

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!

Sunday, September 21, 2008

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!

Saturday, September 20, 2008

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!

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!

Friday, September 19, 2008

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.


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!

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.


Thursday, September 18, 2008

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.

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.

Wednesday, September 17, 2008

Another Eventful Night But Still Seizure-Free

Scott had another eventful night last night but remains seizure-free. He has been quite tired today and has slept for most of the day. He is eating well though and drinking plenty of fluids... and dreaming of the day he can say goodbye to the hospital staff and return home to play with Otto and Katze.

Tuesday, September 16, 2008

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!


Monday, September 15, 2008

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.

Sunday, September 14, 2008

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.

Saturday, September 13, 2008

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.

Friday, September 12, 2008

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.

Getting out of Dodge

My Dr. just stopped by the room and is releasing me from the hospital today. I am pretty excited to be going home. :)

Ready... and Waiting....

Scott had another restful night here at the hospital - despite the sleep study monitor. He has eaten breakfast and lunch, has completely dressed and is now sitting and waiting, as patiently as he can, to be released. Hopefully it won't be too much longer now. We'll continue to keep you posted.

As always, thank you for your love and support!

Thursday, September 11, 2008


Still here in the hospital. Dr. Dean is going to start me on a new drug, Lyrica, tonight. Hopefully that works and they will let me out tommorow. :)

As for the PET scan, Dr. Dean reveiewed it and believes that the seizure activitiy is still eminating from the scar tissue left over from my brain surgery 15 years ago. She is going to review these results with the neurosurgeon that implanted my VNS to see what, if anything, can be done.

Dr. Dean is also performing a sleep study on me tonight to see how well I am sleeping. Hopefully I will know more tomorrow.

So far so good....

Scott had a restful, seizure-free night. He ate a full breakfast of french toast and sausage earlier this morning and is resting again now. We are still awaiting the results of the PET scan. I'll continue to keep everyone posted as I hear more.

Please also accept our sincerest thanks for all of your calls, emails, visits and especially the prayers that have been lifted up for Scott's speedy recovery. We are truly blessed to have such loving friends and family.


Wednesday, September 10, 2008

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.

First Night in Hospital

Scott was able to rest pretty well last night even with the usual headaches of being hospitalized. Dr. Dean came by around midnight to check on him. Luckily, he was resting peacefully at that time. However, I quickly explained Scott's frustration at being woken up every few minutes and reiterated that one purpose of his hospitalization is to ensure that Scott is able to rest. Dr. Dean agreed and immediately instructed the staff to NOT disturb Scott for the rest of the evening. While the nurses did continue to check on him each hour, they never woke him.

While here last evening/this morning, Dr. Dean explained that Scott's EEG was normal. She also stated that she wanted him to have a PET scan today. I inquired as to whether or not Scott should have a sleep study - something we have discussed in the past - however, Dr. Dean stated that she first wanted to see what, if anything, the PET scan showed. When asked, Dr. Dean was not able to indicate how long Scott may be staying in the hospital. Keep your fingers crossed that Scott's stay will be short. I know that he longs to return home soon.

The staff arrived to take Scott down for his PET scan at 7:00 am this morning. He was a real trooper - thanking each and every one of them for their help. It is my sincere hope and prayer that the PET scan will reveal something - anything - that may enlighten us on the recent flury of seizure activity and allow us to start on a new course of action to help reduce it. I'll continue to update you as I hear more.


Tuesday, September 09, 2008

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.

Tuesday, August 26, 2008

Seizure at night

I had a seizure right when going to bed. I had taken my meds, so only explination might be that I was simply very tired.

Monday, August 11, 2008

Back to back seizures

One seizure at 12:30 AM. One seizure at 10:00 AM

Thursday, June 19, 2008

J.B. Symes, DVM. v. Epilepsy, et. al. (part 3)

Part 3.

So I finish school ok, and then get a job about midway between Charlotte and Ashville. Several months after starting work there, I began having some small-generalized seizures that merely stopped my concentration for split seconds. A MRI and EEG showed nothing that would indicate that the growth I had removed had returned. So my Dr. changed my medication from Tegretol to Lamictal. This cleared things up.

Application of Symes' theory: Continued food intolerance + new allergens = compromised immune system & seizures. An analogy used in one of his papers is that the body can handle a tremendous amount of stress from viruses, toxins, allergens, etc. But it is limited. So if your immune system is a glass of water, the food intolerances count for about 3/4 of a glass. If you start slowly adding ice cubes (representing other allergens such as pollen or dander), the water will spill over.

The Lamictal was taking care of the seizures ok - I eventually took a new job in Winston-Salem. I moved there and did not have any additional seizures... until I moved again. This time we got a dog and then a few months later moved into a house further out in the county and we got a cat to keep our dog company. I was still OK but then began having the generalized seizures that stopped my concentration for mere fractions of a second. I could still function pretty well, but my short-term memory was declining. I tried another medication - Trileptal, but this did not help. I added Keppra to my Lamictal, and this stopped the generalized seizures.

Application of Symes' theory: Food intolerances + new allergens (dog, cat, new house, different vegitation) = reduced imune system & seizures.

So I'm doing well on the Lamictal and Keppra combo for a while, and then both Christa and I start having allergy problems. Soon after that, I have a full blown tonic-clonic seizure. I then changed the dosage levels of the medication and things improved briefly. From then on, I began having seizures about every 2 - 6 months. In addition, due to the allergies, we bought a new vacuum - if I use it at least once a week, I don't suffer from classic allergy symptoms anymore.

Application of Symes' theory: Although the tonic-clonic seizures are mildly controlled, the food intolerance and allergens are still going to build up and seizures will break through.

Unable to truly control the seizures, I decide to get a VNS. Although I was able to go more than 8 months without a seizure, late this spring they came back. So I am back to trying different meds in hopes that they can stop the seizures.

Application of Symes' theory: Allergens built up during the spring, and finlly overwhelmed the system again. Changing meds may help, but won't stop the seizures from breaking through again without a change to the environment or diet.

Part 4 Tomorrow...

Wednesday, June 18, 2008

J.B. Symes, DVM. v. Epilepsy, et. al. (part 2)

This is the beginning of an attempt to match up my seizure symptoms to the theories of J.B. Symes, DVM with regards to epilepsy. I am using the simplified theory, plus various supporting material from his various texts or links.

My first seizures occurred when I was very young - they were diagnosed as being febrile seizures - ones caused by high fever.

The next time I had a seizure I was twelve. It was a tonic-clonic seizure that happened in the middle of the day on a hot afternoon on the back porch of a friend's house. Doctors were unable to determine a cause... but my father has suggested that it could be due to a bicycle accident where I crashed and banged my head earlier that year. Head trauma is definitely a known cause of epilepsy.

If one were to apply Symes' theory to the onset of seizures, the diagnosis might go like this: Since birth I had slowly built up a level of toxins and allergens from wheat gluten and milk. After moving to south Georgia, additional airborne allergens may have accumulated in my system to the point where my immune system could no longer tolerate the allergens and caused a seizure. Perhaps the specific allergen was dog dander - my friend had two dogs.

I had several more seizures after the first one and was then put on a AED - pehnobarbitol - which reduced my seizures tremendously, but the mind-numbing side effects were quite bad. After several years in Georgia, my family moved to North Carolina. Soon after moving, I began having more seizures. My Dr. had me switch medications which reduced my seizures long enough so that I was able to get a driver's licence and successfully complete high-school.

Application of Symes' theory: Moving to a new location introduced multiple new allergens (dog, cat, construction dust, different trees and plants) to the body, which, when added to the food intolerance, overwhelmed the immune system and allow seizures to break through.

After high-school I moved to Boone, to attend university at Appalachian State (yes, the small school that beat Michigan). Not long after attending, I began to have seizures again. Possible causes - social stresses, lack of sleep, ???. In any case, with the help of friends, family, and gracious professors, I managed to make it through freshman year.

Application of Symes' theory: New allergens + food intolerance = breakthrough seizures.

Back home for the summer - I tried every available AED on the market at that time - nothing worked. So I had an MRI done. It showed that I had a tumor-like growth in my head. My neurologist said that this was most likely the cause of the seizures and that it should be removed. I had my skull sawed open and the majority of the growth was extracted - some was unable to be removed as it was deeper/entwined in the brain. After having the operation, my medication (Tegretol) was able to control my seizures again.

Here is where it gets a bit more difficult to apply the theories. If the cause of the seizures was the growth, would that preclude the theory of the food intolerance plus allergens? Perhaps not. Symes' cites research showing that reduced immune systems can have an impact on malignant growths and cell embedded viruses. Or more likely, the healthy immune system was able to handle the extra stress from the growth in my early years, but as my immune system continued to be compromised by the food and allergens, it simply couldn't handle the stress any longer.

Tomorrow I will continue the analysis.

Tuesday, June 17, 2008

J.B. Symes, DVM. v. Epilepsy, et. al. (part 1)

J.B. Symes, DVM (aka DogTorJ), sent me a link to his website where he provides the details to his research into food intolerance and how they affect animals and humans. His examination and research on the topic is immense. I encourage anyone interested to check it out on his website.

For the purpose of the next few posts, I am going to simplify Symes' massive thesis into one brief sentence: Food intolerance and allergens damage cells and reduce the effectiveness of immune systems to deal with tissue bound viruses and cell mutations.

So how does that apply to epilepsy? Epilepsy is not a disease, but a condition where a person experiences re-occurring seizures. Seizures themselves are not a disease, but a response by the body to some stress. The re-occurring stress to the body/brain is what "causes" epilepsy.

The most common way that doctors combat seizures is simply to use drugs which inhibit the bodily response to the stress - hence the mind-numbing side effect of many of the drugs. In cases where the stressor is a tumor or brain damage, one way to stop the repeated stress on the brain is to surgically remove the offending tumor or brain area. In cases where the doctors cannot determine from where the seizure-causing stress is emanating, they call it Idiopathic Epilepsy.

Now, consider that doctors are frequently faced with having to treat Idiopathic Epilepsy with some selection of the available anti-epileptic-drugs (AEDs). If you read the white-papers on nearly all of these medications, one thing stands out: they all say that the doctors/manufactures are not clear on the details of how the medication helps stop seizures. Wow... talk about a tough job; trying to treat some unknown cause with unknown solutions!

Here is where Symes research comes in. He painstakingly pieces together historical and medical research to come up with a comprehensive theory on what the stressor is that causes a number of conditions, including idiopathic epilepsy. (It is like M. Night. Shyamalan's "Sixth Sense" when at the end of the movie is all becomes clear and you realize that the protagonist is a ghost.)

What I am going to do over the next few posts is apply theories laid out by Symes to my own medical history and see if his theories match my symptoms/seizures. To be clear, I am applying his theories - this is not a diagnosis by Symes.

Monday, June 16, 2008

No seizures in 13 days...

Great news, I have made it a whole 13 days now without any seizures! The addition of the Depakote may be the trick. Hard to say as I also had my VNS settings adjusted. We shall see how it goes...

(I added one of Blogger's new features - a poll to see what percentage of the readers have epilepsy. Please participate. I have also moved the subscribe buttons to the top. Feel free to get this in your reader or email.)

Tuesday, June 03, 2008

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!

Getting Old Quick

Another seizure this morning. Not so fun. At least I did not bang any body parts too hard. I'll be going back to see Dr. Dean later today. Maybe she will have some other ideas on treatments. Will keep you all updated.

Wednesday, May 28, 2008

Yet another @#$% Seizure

I stayed out of work today because I was tired from my seizure yesterday. Good thing too. I was at my parents house and had a tonic-clonic seizure while laying on their couch. Didn't get hurt though, so that was good. Christa called the Dr. and I will be going to get an E.E.G. tomorrow morning.

Tuesday, May 27, 2008

Yet Another Seizure

Scott had a tonic-clonic seizure at approx. 5:30 this evening while we were driving home from work. He did stop breathing for a moment. Unfortunately, I could not get to the magnet in time to swipe his VNS. The seat belt burned his shoulder a bit but he does not appear to have any other injuries. (Tomorrow may be a bit more telling as I imagine he will be quite sore from the seat belt.) Scott is a bit tired and complained of being hot and having a headache afterwards. He is resting comfortably now.

We're not sure if the headache or the heat attributed to Scott's seizure. But we'll keep a check on these conditions just in case. I'll continue to keep everyone updated.

Thanks again for your thoughts and prayers,

Tuesday, May 20, 2008


I had a seizure tonight while at my Doctor's office. It had been 8 months since my last one. I was fortunate that Christa was able to catch me before I fell onto the concrete floor - so all I suffered was a slightly banged up elbow and a headache. Christa said that I did not stop breathing this time, so that is a great improvement on seizures past. I credit it to the VNS. While I was there I had them up my current on my VNS... perhaps that will help me go another 8 months with no seizures. :)

My current VNS Settings:
Current: 1.5 mAmps
Frequency: 20 hz
Pulse Width: 130
On Time: 21
Off time: 0.8

Thursday, May 15, 2008

9 Months

It has been nearly nine months since my last seizure. SO HAPPY AM I!!!

I don't have any clear-cut answer as to why I haven't had any... good weather, low stress, VNS... who knows. Probably a combination of factors...

Thursday, March 27, 2008

Kids Speak Up! on Epilepsy

From the Epilepsy Foundation:

50 Scholarships Awarded for Kids Speak Up! 2008
Kids Speak Up! is a national conference for youth leaders with epilepsy. It provides 7-16 year olds with a unique opportunity to educate elected officials and staff about the disease. It’s also the first chance for many participants to speak out and meet other youth with epilepsy.

Chris Ames, a 10-year-old participant, was typical of many at last year’s event. He strode confidently to the stage on the first night of the conference and said, “I’m not ashamed to have epilepsy. I don’t care what people say; I just keep going. I’m a one-man army!”

Fifty families will receive scholarships to attend Kids Speak Up! 2008. Scholarships provide funding for one parent and one child’s travel, lodging and other expenses. They are sponsored through an educational grant from Abbott Laboratories.

Kids Speak Up! will be held March 30 - April 1, 2008 in Washington, DC.

Please contact Joseph LaMountain at if you have any questions regarding the event.

Tuesday, March 04, 2008

Three Cups of Tea

Very cool article. Super brief summary. Guy's sister dies from epilepsy. He decides to honor her by taking her necklace to the top of K2. Nearly dies. Saved by some locals. Inspired to build schools for children. The article is great. I'm planning on reading his book: Three Cups of Tea

Monday, March 03, 2008

Over Six Months

It has been over six months now since my last seizure. A very nice feeling indeed... Now, if I can just make it... say... 50 more years. Wish me luck!

Thursday, February 28, 2008

UCB & Epilepsy Advocate Scholarship

UCB and EpilepsyAdvocate have a scholarship program as well. Fortunately, this one has a deadline of May 1. If you are interested, check out their scholarship page.

The Epilepsy Advocate website has a lot of other great information on epilepsy as well.

Kudos to UCB for their research in epilepsy medications and their support for people living with epilepsy.

Monday, February 25, 2008

Epilepsy Scholarship

I just got this notice from Pfizer regarding their Epilepsy Scholarship. The applications have to be in by March 1st. So if you are interested, click fast!

Kudos to Pfizer for providing these scholarships to deserving students and for creating some great meds to help people with epilepsy.

Sunday, January 13, 2008

Long time no post...

It was quite an eventful Christmas for my family and I. We traveled to Finland to visit our friends over the Christmas and New Years holiday. It was a spendid trip and we were able to tour around the beautiful country for nearly 2 weeks.

One of our worries going into the trip was that the stress from jet-lag might trigger seizures. So before leaving, we asked Dr. Dean (Epilepsy Foundation of NC) her recomendation on the best way to deal with the change in schedule. She told me to keep the same medication schedule regardless of the local time. Being that Finland is 7 hours ahead of the US East Coast, it was a bit difficult, but not impossible. Thankfully it worked and I did not have a single seizure on the trip!