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Tribune Staff Writer.
During that first spring/summer, we spent some strange and confusing days as we tried to learn all we could about Eric's condition. And along with learning, we would rush every now and then into the ER. Eric would seize, vomit and fall asleep; wake, seize, vomit and fall asleep! Constant doctor visits and phone calls; routine blood draws and EEG's became part of our life as we would raise the mg amount of each medication up and down, add various new medications, all in a desperate attempt to stop the seizures.
But something happened late the summer of 1993, Eric began to seize every day, and some days he had several seizures. Many more visits to the ER were made in September and the end of September he was admitted to repeat all the test again: MRI, CT, EEG. No new data was found and we were advised to go to a medical center for a PET scan. The hope was to find an area that was not functioning correctly and test to see if this area was causing the seizures and if so, to have it surgically removed. A very startling thought for a parent: brain surgery for your young child! Well, while we thought and debated hard on this decision, Eric's seizures were becoming worse. Things were getting very difficult at home. Eric was having a hard time keeping any food down. It seemed that almost anything in his mouth caused him to gag, including the many pills.
Getting the medication into Eric was becoming difficult at times. I learned how to lay him on the couch with his head flat and slowly drop the pills, one by one down his throat. We would pause in between and I would ask if he was ok. By now both Bob and I were convinced that surgery was what was needed. Eric kept having more and more seizures daily and he was beginning to loose far too much weight.
Our first appointment in the hospital's brand new Pet Center was set for Jan. 1994. How ironic, here we were, one year later and very desperate. I never realized what would happen in that very long year to my child.
The PET results were very precise and found what everything else could not see. Eric was scheduled for surgery in early April 1994. They would remove the right parietal lobe only. Even though the neurologist believed that both the parietal and the temporal lobes were a concern, the team as a whole was not completely convinced that the temporal lobe should be removed. Subdural electrodes or EEG grids were placed on the surface of Eric's brain in the first surgery and one week later the neurosurgeon used these grids to resection the right parietal lobe. After the surgeon removed Eric's parietal lobe, he experienced complications; excess fluid was building up and putting pressure on the brain causing a temporary paralysis. First he was "tapped bedside", then came a surgery to repair any tears in the membrane and finally came a surgery to implant a shunt. Eric was so weak from all the surgeries and the paralysis that he could barely walk, and would not use the left side at all. Now physical and occupational therapies were started.
Repeat tests indicated that the right temporal lobe was quite active and surgery was scheduled for the end of July 1994. This surgery went very well and Eric was exhausted but happy to be on his way home. The seizures never stopped completely but were decreased by about 60% from the resectionings.
Side effects from the surgeries: Eric has superior quadsantanopsia or loss of vision in the upper quarter of space (peripheral vision) and a weakness on the left side of his body. This weakness on supporting himself has caused his foot arches to fall and legs to turn out, now Eric requires orthotics to try to correct his stance. And a new condition came up...sometimes, not always, after seizures Eric will experience a temporary paralysis on one side of his body for a brief period: Todds Paralysis is what it's called. Todd's Paralysis can last for 1 hour to 48 hours.
In September 1994, Eric had begun on a new drug that we would get from London. And when that did not seem to help much, Eric went on the Ketogenic diet for 4 months. Very little improvement in the seizures was seen on the diet.
About this time it was felt that Eric would be a good candidate for a multiple-subpial transection. So again we went for testing. And the answer.....Eric's seizure activity had "mirrored" itself, meaning that the left side of the brain had taken over the seizure activity and the right occipital lobe was "completely damaged". I became very concerned that we were dealing with a degenerative condition. Yet all of Eric's doctors said no. I even took him to see doctors at other places. They all said the same thing. Something to the extent that very difficult intractable epilepsy's are hard to control and that the brain forms new connections when the brain is constantly seizing.
July 1995 while reading the Epilepsy USA magazine I read of a company that was looking for patients with intractable epilepsy for a new device to be done in clinical trials throughout the US. I made a request to have Eric in the clinical trials for the new vagus nerve stimulator. The brochure that came made this device sound like the answer. I asked Eric's Pediatric Neurologist to help me fill out the form. At the time I felt we had done much more invasive procedures and were constantly experiencing negative side effects from all the medications, the Vagus Nerve Stimulator seemed a simple decision. And then came the letter in August; Eric was rejected due to his past surgeries.
Several months after that, Eric's school aid gave me an article from a London newspaper about a young girl seeing great results from the use of the Vagus Nerve Stimulator. And then I meet a boy who had the Vagus Nerve Stimulator implanted during the trials. In talking with both Mom and boy, I was so excited. This boy's life prior to the device sounded just like my Eric's. And to hear of his success after 2 years with the device was incredible. Mom said he no longer needed a one on one aid at school, was actually learning and had made the honor role just last semester. And best of all. He had had no seizures in one year! It just sounded too good to be true.
The government approved of the Vagus Nerve Stimulator in August of 1997 and Cyberonics promptly sent me a brand new packet complete with a video. This time I asked the neurologist for the name of the neurosurgeon who did the clinical trials and told her I was ready for this device for Eric. She reminded me that medications are not withdrawn while using the device; but that with good results some medications may be tapered. The Neurosurgeon explained that this was a simple procedure for him yet carried some risks for Eric. We talked them over and scheduled his surgery date of Dec 5, 1997.
Eric is 11-1/2 years old and when I showed him the video, explained how the device worked; sort of like putting your seizures to sleep. Eric though hard about it and replied that he did not want them asleep but "out" of his brain. I reminded him that we had tried to remove them and it did not fully work. So he agreed to see if this device could make his seizures go to sleep and leave him alone.
The device is implanted into the fat pocket in the left upper chest (much like a pacemaker) and has leads that extend up to the left side of the neck where they are attached to the vagus nerve. Attaching the leads in the neck is the most detailed part of the procedure because of the location of the carotid artery and the jugular vein. The surgery was approx. 1-1/2 hours for Eric. He rested in recovery for one hour and then went into a room. When he first saw me he had such a look for hurt. I asked Eric if it hurt, he blinked tears in response. And I replied that it was ok to cry if it hurt, "I bet you didn't realize that it would hurt so much did you?"
For Eric it was the neck that hurt but nothing that some Tylenol and Disney's "Bambi" video could not heal. He rested in the room all afternoon watching videos and playing with me till dinner. He was very hungry and by the time Dad got there after work, Eric was a content and happy kid. The next morning was Saturday and Dad and I took Eric home. Eric returned to school on Monday with his aid watching closely for exhaustion. Eric was happy to be back at school and although he had an uneventful school day, he napped at home.
Two weeks after the implant surgery, we went to see the neurologist to have the device turned on. What this means is that the device will cycle on and off much like a refrigerator. Sending a pulsing signal up the vagus nerve to the neurons in the brain with the hopes that the constant stimulation will calm the excitability of the neurons and keep a seizure at bay. The device in Eric is set to pulse on for 30 seconds of stimulation with 5 minutes off. You are even given a small magnet that can be held over the device for a brief period should the patient feel a seizure coming on or the caretaker see a seizure coming on. This action has helped some people to have a less intense seizure or halt the seizure. It all sounds so "new world" like.
The first time the device was turned on, Eric let out a deep dry cough and the doctor commented "Good, it's on now." The stimulation was set at .75mA for Eric at this visit (12/23/97) and we stayed for one hour to be sure that he tolerated the stimulation well.
Very strange to say but within 24 hours his older sister asked if I noticed the improvement in Eric. Well, I though he was more alert but then again, I thought it might be wishful thinking on my part. But after Christmas break the school also noticed a much more aware Eric. And we have had the pleasure of stopping some seizures with the magnet. Dad stopped one, I stopped one, Eric's sister stopped one and the school stopped one all within the first two weeks of stimulation! There were some we were not able to stop but having that kind of control in your hand is impressive. The stimulation was turned up to 1.25mA on Jan. 8, 1998 and in March up to 1.75mA.
The best part: the lifting of some of that cloudiness. As a parent who is forced to give their child multiple medications to try to relieve an unfortunate condition, you never know if the clouded thought process is drug related or seizure related or both. I truly have enjoyed having Eric become less clouded in his thinking. One of my favorite comments from his school aid she wrote on 2/11/98: "Regardless of the seizures, Eric's retention and wanting to learn seems to have increased since the vagus nerve stimulation implant."
January saw only 7 seizure days for the month (down from 16 seizure days/month). And Eric has just gone 15 days with no convulsive seizures! A first for him. Eric has so seldom ever felt an aura before and now he has experienced some aura's that have not turned into tonic clonics. February and March both saw only 8 seizure days for the month, and some of those were only simple partial seizures. This is a great improvement for a child whose seizures normally generalize and he falls within seconds of their onset.
Eric received two magnets after the surgery. The one larger horseshoe magnet we keep at home in the kitchen which is centrally located in our home. The smaller magnet I put into a marble bag and attached a leather whip to the end of a key ring. The key ring is looped onto the belt loops of Eric's'jeans and the marble bag with the magnet securely inside is slipped into his left pant pocket. This keeps his magnet close enough so that the magnet can be used by school staff or family. We do not take it out of the marble bag, just pull the bag out of his pocket should it be needed.
I do believe that Eric's magnet has ruined a few computer discs at school and we will need to continue to experiment with the best location for these discs and or the magnet.
Eric has never noticed the cycling on of his stimulator, nor has it bothered him ever enough to complain of it. As the Mom, I do notice the change in his voice. I believe it is only because I am listening for it as other people never hear the change themselves.
Eric is still taking medications, the same medications that he was taking prior to the Vagus Nerve Stimulator implant and will I am sure for a while.
His next visit with the Neurologist in regards to the device is in May.
Eric's device on 11/23/98 was just set to .8 minutes off (approx. 45seconds) and 21 seconds on. The amperage is at 2.75mA. We no longerneed the magnet. This rapid setting was first attempted in late Augustat 1.8 minutes off and 30 seconds on. How we went to rapid stimulationwas I met a woman whose son Eric's age had been set at rapid stimulationand after 3 months of rapid stimulation, went 63 days without aseizure! That just sounds so sweet. Eric's amperage of 2.75mA was doneat gradual increments. He started at .75mA, three weeks later it wasset to 1.25mA. Nine weeks after that 1.75mA. Eight weeks after that2.25mA. Nine weeks later, he was set to his current 2.75mA.
I do believe that the device has assisted Eric well in his life. Hecontinues to function much better than he did last year. Much clearerthinking. I know that during this past year we have had some bad luckwith a medication that we felt would work well. Eric had just startedon Gabitril two months before the device was turned on and at highlevels of the Gabitril, Eric's seizures intensified. Then we had todeal with the slow removal of this medication from his system.
I still am confident that I made the right decision for Eric to implantthe VNS. I believe firmly that the continuous stimulation will in timelessen more seizure activity than it has thus far. I believe that Ericis better. Less seizures, greater awareness, better able to communicatewith others. Would I recommend the VNS for others? Yes, and I have.
In retrospect, October seizures were very bad but I thought a cold was the cause and November seizures were clustering on the days he had them even using Ativan and Diastat. Just never thought about the device as It had been examined 8/27/01. And we just kept upping his current medications.
So I got a first had experience that although for Eric, the device does not stop all his seizures, I can say with confidence that it does some good. We had not seen cluster seizure days in the 4 years except just recently.
The surgery for the new generator was done Dec. 3 and the neurologist set his generator to the previous parameters after surgery. Eric does have quite a bit of ataxia and the surgery, although done as an outpatient and very brief did wear him down and he had a fever for the two days after surgery.
The surgery site is healing well. I can tell that the device is turned on and I'm looking forward to greater seizure control for Eric in the coming months.
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