He had an ultrasound in the first 2 weeks of his life, on his head to measure the ventricle, and get an idea the size of it. He had his first MRI when he was 3 weeks old. We bundled him up in receiving blankets, and he sat still through the whole thing. His second MRI came around 3 months old, and that was under General Anesthesia, to keep him from moving during the scan. It showed that the ventricle had grown slightly, under 5%, but the neurosurgeon wasn't worried, as it had grown proportionately to his head growth. His 3rd MRI came Dec. 23, 2010, again, under general anesthesia. He did much better waking up from the anesthesia this time ( he wasn't such a fan of it the first time). This scan gave them the same results, which was good news. The neurosurgeon explained to us, that No shunt is the best shunt! As long as Josiah stays the same, he can remain unshunted forever. He will be monitored every 6 months to watch for change in the size. He had another MRI a few weeks ago, June 23.
In August of 2010, Josiah was admitted to the children’s hospital, as he suffered his first big seizure. He had a focal seizure, which started with a twitching of his right foot. At that point, we were still getting up in the mornings with Daddy when he left for work, so at 6:00am, on August 4, Josiah was in his excersaucer, and I noticed his foot extending every few seconds repetitively. I pulled him out, lay him down, and watched it for a few seconds. I tried to see if I could massage it out quickly, thinking he may have pulled something, however it made no difference. After 10 minutes, and a few phone calls to Caleb (daddy), we decided he needed to go to the emergency. We brought him up immediately (my sister was staying with me....Thank God, because she watched him in the car on the drive there). By the time we reached the hospital, his right side had gone limp, and in the Triage unit, his right leg still twitching, his right side began to contract as well. The seizure lasted 1 hour and 20 minutes before they stopped it with Valium. We were then sent by ambulance to the Children’s Hospital in the city. We stayed in the hospital 4 days, being released on Saturday afternoon. Josiah was started on Phenobarbitol, which until December of 2010 kept him seizure free. At that time, he had another focal seizure; however, this one resolved itself after about 4 minutes, which was a blessing, because, although we have Ativan in the event a seizure doesn't stop after 4-5 minutes, I really don't want to have to use it!!! His Phenobarbital was increased then. In January 2011, we started noticing significant "staring spells", as well as unusual eye rolls, and eyelid fluttering. While we had noticed them in the past, they were never this pronounced. We recorded them, and mentioned them at his next neurology appointment, however, nothing showed up on either of the 3 EEG's he had had to confirm our suspicions. Shortly before Josiah's 1st birthday in March, he began to display unusual eye and head movement after he woke up. His eyes roll to the right, and his head would fall. This would happen multiple times (initially, we noticed maybe a dozen, however, as it progressed, we have counted as many as 50+ at a time). It's like he goes unconscious for a split second, and loses control of everything. We caught it on tape, and sent it to our neurologist. We new before speaking with them that these were Drop Seizures, or Atonic Seizures, as we have read a lot about epilepsy, and they types of seizures that exist. Once the Doctor saw the video, he started Josiah on Valproic Acid to attempt to control these new seizures. After many increases on the Valproic Acid, trying to find a level that would be adequate to control these seizures, the Neurologist decided it wasn’t going to work, as we saw no improvement at all. So he started Josiah on Topomax, and began to decrease the Valproic Acid. This was where things got tough. Josiah did alright on the first few weeks of Topomax, as he was starting at a low dose. The day after his 3rd increase to the dose, Josiah began to grab at his head. This was unusual for him. He was whining a little bit, and seemed out of sorts. We comforted him, and tried to settle him down for a nap. He fell asleep whining, and after being asleep for about 3-4 mintues, he shot up screaming and crying, and grabbing at the back of his head. Caleb and I gave him some Tylenol, and he cried himself back to sleep. This happened about 3 times over the next ½ hour. And for the following 3 days, he remained on Tylenol every 4-6 hours to control the pain. As the pain started the morning after another increase to the dose of Topomax, we began reading on the internet about the possible side effects of Topomax, and learned that, while Topomax is a drug used for the treatment of epilepsy, it is also used as a preventative treatment for people who suffer from migraines. And, some of the people who were using it as a migraine treatment were reporting that the headaches they suffered from while on the Topomax were more severe than the migraines it was supposed to be treating were. So, based on that, we thought it a good possibility that this was the cause of the headaches he was suffering, and decided we would mention it to the neurologist.
We had an appointment with the neurosurgeon the 4th day of his headaches, to review the MRI we had on June 23rd. He was showing me how the ventricles in his brain had changed in size (both had, which was different than before, as his condition is unilateral, not bilateral, and so we had never really seen an increase in the right ventricle up until now). He said that by looking at it, it seemed to have increased again proportionately to the increase in his head size, and since he wasn’t showing any other signs of pressure on the brain, he wasn’t concerned about the increase in the ventricle size. We decided that since Josiah’s neurologist was off on holidays, I would mention the headaches to the Neurosurgeon, and ask his opinion about the possibility of the Topomax being the cause. As soon as he heard that Josiah was having headaches, he became concerned. He understood that there was a chance it was the medication, but his concern was the off chance that it was because of pressure. He said that he would not be concerned about the results of the MRI at all, based on his physical examination of Josiah, he presents himself as a content child, not one under duress. His head circumference was increasing at a good curve for a child his age, and he was exhibiting no other obvious signs of pressure. Except for having headaches. They can be an early indicator of pressure beginning on the brain. He felt it would be helpful to do an “intracranial pressure monitoring” surgery. This is where they drill a tiny hole in the skull, less than 2 mm in size, and a devise is inserted into the head for 24 hours to monitor the pressure of the brain. Then it is removed, and the results are read. From there, they can determine definitively the level of pressure, if any. We discussed this procedure briefly; however, because Josiah is on Valproic Acid, his chance of suffering a bleed during the operation is significantly increased. An alternative non invasive way to determine if there is pressure is done by enlarging the pupils, and looking back at the state of the optic nerve. We decided to schedule an ophthalmologist appointment for early the next week, where he would join us, and see how the optic nerve looks. If the optic nerve looks healthy, it gives the doctors about a 90% confirmation that there is no pressure. So, when we saw the Ophthalmologist and Neurosurgeon the following week, they looked at the nerve, and decided that they would like to look at it in one week, as the ophthalmologist was fairly certain that there was no pressure, but wanted to ensure it wasn’t in the early stages of pressure developing. The following week, his Optic nerve looked good. This was great news, as it meant that there would be no need for the monitoring surgery at this time.
Another change that occurred in those weeks, was that Josiah began to have frequent “staring spells” again, and also was having quite a few clusters of eye rolling, and eye lid fluttering again. He had one of the eye rolling events during our appointment with the Neurosurgeon, and he confirmed my suspicions that they were a type of seizure.
We met the neurologist the following week when he returned from holidays, and he confirmed for us, that the headaches were most likely caused by the increase to the Topamax, and they subsided as a normal side effect does once the body becomes accustomed to the medication, or in Josiah’s case, the increase. Another increase to the Topamax was decided. Also, we determined at that point that the Valproic Acid had actually been controlling the previously undiagnosed absence seizures (the staring spells), and the Atypical seizures (the eye rolling, eye lid fluttering). And, so we increased the Valproic Acid, and decided to try to decrease the Phenobarbital. At this stage, Josiah has not had a Phenobarbital increase since January of 2011, and has gained a lot of weight since then, so it is most likely having very little effect on him anyhow. The two other medications should be capable of controlling the focal seizures. He has had a few focal seizures in the night in the last few weeks though. Thankfully, they have all resolved themselves. The first one was about 3 weeks ago, and it was quite similar to his first one; a constant twitching of the foot that lasted about 2 ½ minutes. The second one occurred last week, and it was the right side of his body contracting, again lasting only a few minutes. After the most recent increase to the Topamax, Josiah has not been sleeping well at night. It seems odd though, as he has been so tired from the medication, but stirring every half hour, all night long. Over the last week, his drop seizures have intensified significantly. After his noon naps, he is having upwards of 50 drop seizures, in a matter of 5-8 minutes. We met the Neurologist again on Thursday. Both Caleb and I, and the Neurologist are convinced this medication isn’t working either. In fact, they seem worse. So, back to the drawing board. I mentioned before how diligent Caleb is to read about Josiah’s conditions, and the best way that we can help him, most effective medications and treatments, etc. In his reading, he has heard a lot about Keppra, and its effectiveness for a lot of epilepsy sufferers. So, when this was one of the medications that the doctor offered, Caleb was eager to try it. The Neurologist let us know that based on his experience so far, it is looking like Josiah may suffer from seizures that don’t respond to medication. That being said, we may need to look at alternative treatment options for the drop seizures. They are the Ketogenic diet, and if that is unsuccessful, then a brain surgery called a Corpus Callosotomy is the next step. So, we are now reading about those two options, but LORD WILLING, this go of Keppra will be effective.
That’s all for now. He started the Keppra this morning, so I will keep you posted how this goes. God Bless
Caleb and Natasha
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