Brendan was diagnosed with myoclonic epilepsy based on an EEG about nine months ago. We had noticed an increasing number of times in which he'd suddenly lose his balance or thrust out his arms. It looked like an infant's startle reflex, but Brendan had just turned two. Both Brendan and his brother had similar jerks in the past while they were ill and had high fevers (which they got very easily) but this was the only time that the jerks continued after the illness was resolved. We were at a friend's beach house when Brendan suddenly fell flat on his face, with no attempt to protect himself with his arms. That was when we knew that this was something more serious and his pediatrician ordered the EEG, after which we were immediately seen by a pediatric neurologist.
The neurologist diagnosed myoclonic epilepsy and prescribed a low dose of Keppra, an anti-convulsant. I didn't know at the time that as far as seizure meds go, Keppra is pretty mild. All I could see were the possible side-effects, most disturbing in terms of increases in aggression, depression, and even suicidal thoughts. Of course these side effects were listed only for those over age five, but I'm pretty sure that's just because a two-year-old has a rather hard time articulating their mental state (or perhaps it hasn't been tested on children that young). In any case, I was convinced that we could find a more natural and holistic approach. We pulled Brendan from day care, stuck to a strict routine (with an emphasis on naptime) and tracked seizures and what he was eating very closely. With this we were able to drop the frequency of his seizures from nearly 20 a day to about 10. This sounds like a lot of seizures, and it is, but keep in mind that they only last a split second and he hardly seemed aware of them. About the only thing that upset him with the seizures was when he dropped a favorite toy or treat during one (but this was usually remedied by employing the "5 second rule"!)
Still, we were worried about any damage to his brain that might be caused by repeated seizures (although subsequent research seems to suggest that seizures of this duration shouldn't cause lasting damage) so we agreed to begin with a very small dose of Keppra and increase slowly. We worked our way up to 2 ml in the morning and 2 ml at night and got his seizure frequency down to only one or two a day. I did notice some side effects each time we increased the dosage. Brendan would become more easily frustrated and break into tears with very little provocation. This would last for about two or three days and then level off. Keep in mind that he had just turned two and has always been a kid with pretty extreme emotions (at least compared to my first born). He has the most radiant smiles, but can also be pretty demanding and dramatic at times. That's what makes monitoring their moods so difficult. Pretty much everything could be explained by doctors as the "terrible twos," so I had to trust my own instincts. Nevertheless, he was still happy overall and coping well, and we felt relieved that his seizures were more under control.
Starting in December of 2010, the frequency of Brendan's seizures began to creep up again, but was still between 5-10 seizures a day. We had a big move (out of state) and lots of changes in January and we were very worried about the stresses on him. He did begin to act out more, but his number of seizures stayed about the same until March. Early in March, for no apparent reason, he started to get seizures much more frequently. My mother has gluten and dairy allergies, and I'm always up for an alternative approach that doesn't involve more drugs, so we embarked on nearly two months going gluten-free and dairy-free with a toddler...not an easy task. This was especially challenging because we were in a new place with limited finances and little access to help or resources. But, we managed and it certainly got easier and easier as we went along. We started out with a lot of gluten-free replacements for favorite snacks,etc. which were handy but expensive, but gradually were able to move to a more balanced diet that simply focused on different foods. Brendan has never liked milk, and LOVES rice, so that helped. Unfortunately, this diet didn't seem to help much with his seizures, but did get us watching what we ate closely again and encouraged us to make more of our own foods and cut down on the processed goods, so I'm thankful for that.
The out-of-state move meant that we had to switch doctors, and getting in to see a new pediatric neurologist was a nightmare. When Brendan's seizures were increasing to nearly 20 a day, I started calling around frantically. This was in March, and when I finally found someone taking new patients they set an appointment (first available!) for July!!! Luckily his new pediatrician referred us to someone who was able to see us at the beginning of this month. At the same time we got results to an allergy test that we had done (watching your two-year old bravely endure needles to have blood-drawn is something no parent wants!) which showed no gluten or dairy allergies (or anything else on the panel of common allergens). I guess that they could still be triggers without being a "true" allergy, but remember that his seizures weren't decreasing either.
Which about gets us caught up... When we met with the new pediatric neurologist this month he ordered another EEG which showed about the same as the first I guess, abnormal spikes in electrical impulses in Brendan's brain. The new doctor was pretty straightforward that it looked unlikely that this was something that Brendan would just outgrow(a hope held out by the first doctor)...although it was still possible. He suggested that we try upping the Keppra again (we were already at 3ml 2X day) but felt that pretty much it would come down to two options: trying a much more dangerous drug called Depakote, or giving the ketogenic diet a try. Remember that I'd always rather go the natural way? Well, the idea of the ketogenic diet kept popping up along the way as I researched Brendan's condition, BUT the problem is that this diet is taken to such extremes in order to produce major results that it has its own dangers. It's basically a more extreme form of the Atkins diet (although I'm sure those more informed about the diet could probably point to many differences) that requires a very careful count of calories and liquids to restrict carbs and have a huge portion of the diet from fats. My first thought was that my skinny little boy could use a few extra pounds of fat on him, but the reality of it is that proportions of the diet are so skewed that it can actually lead to stunted growth which could be quite dangerous to a little guy who has hovered around the 3% (of normal) in weight since about six months.
Depakote meanwhile has a rare but extremely dangerous side-effect of liver failure or damage, as well as slew of more common physical and mental health effects. The neurologist said he didn't like the drug, but that it really was the best bet for complete control of Brendan's seizures. His main point was that we really shouldn't settle for anything less than 100% control. We were supposed to make our decision between these two options in the next two weeks. Well, I did some internet research and pretty much ruled Depakote out from the get-go. We have an appointment to meet with a nutritionist about the ketogenic diet, but I have a lot of concerns about that as well.
At this point, my main realization is that Brendan's quality of life continues to be really high overall. It kills me to see him have seizures, but he's fine a moment later and continues with life as normal. Now he's aware of what's happening and yells to me afterwards, "Mama, I had one....I had a seizure!" (He knows that I'm tracking them) but this is usually said completely nonchalantly, or even with a smile. Occasionally he wants an extra cuddle, but I'm happy to provide that. I know that this will change as he gets older if the seizures continue. By the time he's starting school, he'll be more concerned about what the other kids think, and we wont be able to monitor his safety as carefully. But I feel like at that point I will have a better baseline for his emotional and intellectual development. He'll be able to tell me how a medicine makes him feel. We'll reevaluate then whether Depakote is the right solution, right now the risks definitely outweigh the gains.
Until then, I have a whole list of things to try: Vit. B6, Melatonin, other vitamin and mineral deficiencies, herbs, acupuncture, changes to diet and exercise. We have learned a lot about triggers (which I'll definitely share in a different post) and will try to continue to track carefully and learn more. This blog comes out of my frustration at not finding alternatives to drugs, not feeling connected with other parents of young children with epilepsy, and as a needed outlet to my own frustrations, guilts and musings. I hope that it will be found by others who are going through similar things, but if not, then at least I will have a record and a release of my own thoughts.
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