I've been meaning to keep updating, but so much has been going on lately in terms of Brendan's development and his epilepsy. I wont get to touch on it all in this brief post, but a few highlights:
1. In mid-July we visited a Integrative (read: open to natural/alternative approaches) Pediatric Neurologist in NYC that my mom had found. The three hour drive (and three hours home) were long and the price was steep, but it was definitely refreshing to talk to someone who was actually interested in finding the root of the problem, who was considering Brendan's overall health as a whole person, and to whom I didn't feel the need to defend my naturopathic tendencies to every five minutes. She ordered a series of blood tests, a stool sample, and a urine sample, and was most interested in Brendan's "gut" and metabolism based on a some elevated levels in his previous blood tests. She suggested that we went ahead and took the final step towards the modified Atkins to see what happens.
2. Only one week later we finally got in to see the "traditional" Pediatric Neurologist at the local children's hospital. We had seen another local ped. neurologist a few months before and liked him okay, but his office was horrible. I never spoke to a live person everytime I called and it literally took them three weeks to finally call in a prescription that we desperately needed (despite me calling and leaving messages at least 3X a week). I found that inexcusable, so I was excited to have the option of the children's hospital which is also where Brendan's dietician is based, and which has a very good reputation in family-friendly care. We liked the new doctor, although she's a commanding presence. She too seemed to be immediately interested in getting to the root of the problem, although she took a different approach from the dr. in NYC. She ordered an MRI and blood tests of her own. She said to go ahead with the MAD and gave us the prescriptions that we had been waiting for (ketostix and powdered multivitamin) but was worried about Brendan's elevated cholesterol levels. She was the most hands-on of all the drs. we have seen yet and performed a number of neurological tests on Brendan herself as well as using her hands to check his liver size and consistency. I was also excited that she was anxious to wean Brendan off Keppra as soon as his diet is stable (although she's not writing off other drugs).
3. We have since moved ahead with the MAD, really we have been inching that way all along. The last thing to kick was the juice, which had become very watered down at this point. Luckily I figured out how to sweeten a lemon herbal tea with stevia in a way that Brendan is usually happy with. (I've been experimenting with a lot of recipes, but more about that at another time). So, I still don't think that we're at the 10 daily carbs recommended on the MAD, (more like 15-25) but I guess it doesn't matter because Brendan is in ketosis! He loves peeing on the ketostix by the way, thinks it's great fun. AND.....it seems to be working!!! Yay!!! He's had a number of seizure free days in the past week, and those that haven't been seizure-free, he's had just one and that was just before falling asleep (one of his most susceptible times).
The past few days he's been sleepy and grumpy, and I wasn't sure if it was from just starting at daycare, the diet, or if he was starting to get sick. I read on a lot of the forums that the first week is the roughest in terms of feeling lethargic and grumpy because your brain hasn't quite figured out how to get sufficient energy from the fats and not sugars. But, today he seemed much better. Full of energy and spunk.
I'm afraid of jinxing anything, but I think we're really on the path to recovery here. I can't wait to kick the keppra. Of course, we'll still have to see what all the tests say, I'm particularly apprehensive about his cholesterol level because I'd really fight to keep him on this diet if it's working, but I know that the docs might have major problems if the cholesterol continues to rise.
The next 2 weeks will be critical. We've got to survive his birthday and a week of vacation and stick to the diet, then get the MRI and bloodwork done and wait for results from all the tests! It seems like so much at once after a year of trying to get someone to do something besides up his dosage on the same med!!! But I am so so so thankful and so positive. It's amazing how quickly it's already become "normal" for him to be seizure-free, and that is how it should be!!!
Wednesday, August 3, 2011
Saturday, June 11, 2011
Diet Update
At the beginning of last month I really started tracking what Brendan was eating and when he had seizures very closely. This corresponded pretty well with when we increased his dose on the Keppra to 4ml 2X day. At first it was hard to keep track of everything, although I don't try to be perfect, but it got easier as I got used to it. The frustrating part was the lack of pattern. Although I'd still say he averaged about 10 seizures a day, one day he had four (a day that I know he didn't get enough rest and was out of routine) and the next 18 seizures (when I made sure he was back on schedule, etc.). Obviously, this could be due to a delay in reaction, but it's so hard to track or see a pattern.
On 5/20 I began to consciously start cutting carbs from his diet. We've been pretty relaxed about this and have quietly reduced his grains to pretty much nil. We do let him have a few tortilla chips (his favorite) now and then, and occasionally he'll eat a small amount of rice with us (another favorite), but breads, etc. are pretty much out. That wasn't too hard overall. Cutting down on the hidden carbs, mostly in sweeteners, etc. is much harder. He's never gotten that many pure sweets, and we've pretty much eliminated candy and cookies with no problem. But, he's pretty much addicted to these yogurt tubes (that you squeeze into your mouth) which is great for the calcium and fat, but they also contain a fair amount of sugar (no High Fructose Corn Syrup or artificial colors/flavors). If we're being serious about the diet, then there are certain veggies and fruits that are lowest in carbs. At this point, I will continue to give Brendan any veggies or fruits I think I can get him to eat. Luckily, berries are the fruits lowest in carbs and blueberries are probably his favorite fruit, and he LOVES broccoli, and will eat raw sweet pepper which are both pretty low. Basically on this diet, the more protein and fat he can get, the better. A main example of the switch was making him sausages or eggs every morning for breakfast instead of cereal.
In the first two weeks of the diet, I'd say that his average number of seizures dropped to about 8 a day, but again it was inconsistent. By the third week we had some really good days, more like 3 or 4 seizures. Unfortunately, this was also a time in our lives when we needed to focus on some other things, so I stopped tracking everything for a week ( I also needed this mental break from the up and down), and I'm afraid that we relaxed on the diet a bit. This week I started work and my husband is home with the boys in the morning, and we didn't communicate well enough about what exactly he should be eating. On Tuesday (I think) I sat down on the computer and developed a log that I could print out that would simplify keeping track of what he was eating and his seizures, and that has helped a lot. So, that's where we are at this point. According to the past couple days we're back to averaging about 9-10 seizures.
A lot of them are happening either when he's falling asleep, or in his carseat. Which makes me feel better because I'm not worried about his safety in either case. We've noticed that his seizures happen when he enters into a relaxed half-awake or drowsy stage, and if we can keep him out of this daze by keeping him engaged then he doesn't have the seizures. If someone sits next to him in the car and keeps talking to him and keeps him entertained then he doesn't have nearly as many. Sometimes it's very hard to avoid this stage, for instance when he's falling asleep. Other examples of when he's likely to have seizures is when he's being read to, or watching TV. We'll keep trying to reduce TV time (if he was an only child I'd just keep the TV off, but that's much harder with a 6 year old around...and I don't want his brother to feel "punished" by Brendan's restrictions). The reading is harder, because we don't want to restrict it and it's really one of this favorite things to do. Again, if we keep trying to engage him and keep him talking while reading than it helps.
A few random notes: we cut out apple juice for a while, because that has been the one constant in Brendan's diet, but didn't see a huge difference so we've gotten lax again...still, it might be worth revisiting. Also, I had been giving him 100mg of B6 each night for the first two weeks, but missed a few nights and didn't notice a difference so I stopped. Then, last week he started sleeping poorly, just tossing and turning a lot and calling out in his sleep. Remember, this coincides to having a lot less time with me during the day (which overall he seems to be adjusting to with very little problem) so it's not conclusive, but I started the B6 again (which is supposed to help with sleep) and he's slept a bit better the past two nights. I'll keep it up and try to report back about whether that is helping. Once we start holding some other variables steady, I'd like to add melatonin into the mix to see if that helps his sleep and maybe even his seizures.
Last complaint: Although we liked the neurologist that we saw most recently, we cannot get his office to call us back or even call in a prescription. I've been told that his regular secretary is on maternity leave, but whatever measures they've taken to cover for her are really failing, and I'm sick of it. Back in February we'd set an appointment at the nearby children's hospital with a neurologist that couldn't see us until July, and I never cancelled that appointment even when we got in with the other guy. Now, I think we'll keep that appointment and see what we think of this other person, just in the hopes that we can keep better lines of communication open. My mom has also gotten some information about more wholistic pediatricians and neurologists, so I'm excited to follow up with them.
On 5/20 I began to consciously start cutting carbs from his diet. We've been pretty relaxed about this and have quietly reduced his grains to pretty much nil. We do let him have a few tortilla chips (his favorite) now and then, and occasionally he'll eat a small amount of rice with us (another favorite), but breads, etc. are pretty much out. That wasn't too hard overall. Cutting down on the hidden carbs, mostly in sweeteners, etc. is much harder. He's never gotten that many pure sweets, and we've pretty much eliminated candy and cookies with no problem. But, he's pretty much addicted to these yogurt tubes (that you squeeze into your mouth) which is great for the calcium and fat, but they also contain a fair amount of sugar (no High Fructose Corn Syrup or artificial colors/flavors). If we're being serious about the diet, then there are certain veggies and fruits that are lowest in carbs. At this point, I will continue to give Brendan any veggies or fruits I think I can get him to eat. Luckily, berries are the fruits lowest in carbs and blueberries are probably his favorite fruit, and he LOVES broccoli, and will eat raw sweet pepper which are both pretty low. Basically on this diet, the more protein and fat he can get, the better. A main example of the switch was making him sausages or eggs every morning for breakfast instead of cereal.
In the first two weeks of the diet, I'd say that his average number of seizures dropped to about 8 a day, but again it was inconsistent. By the third week we had some really good days, more like 3 or 4 seizures. Unfortunately, this was also a time in our lives when we needed to focus on some other things, so I stopped tracking everything for a week ( I also needed this mental break from the up and down), and I'm afraid that we relaxed on the diet a bit. This week I started work and my husband is home with the boys in the morning, and we didn't communicate well enough about what exactly he should be eating. On Tuesday (I think) I sat down on the computer and developed a log that I could print out that would simplify keeping track of what he was eating and his seizures, and that has helped a lot. So, that's where we are at this point. According to the past couple days we're back to averaging about 9-10 seizures.
A lot of them are happening either when he's falling asleep, or in his carseat. Which makes me feel better because I'm not worried about his safety in either case. We've noticed that his seizures happen when he enters into a relaxed half-awake or drowsy stage, and if we can keep him out of this daze by keeping him engaged then he doesn't have the seizures. If someone sits next to him in the car and keeps talking to him and keeps him entertained then he doesn't have nearly as many. Sometimes it's very hard to avoid this stage, for instance when he's falling asleep. Other examples of when he's likely to have seizures is when he's being read to, or watching TV. We'll keep trying to reduce TV time (if he was an only child I'd just keep the TV off, but that's much harder with a 6 year old around...and I don't want his brother to feel "punished" by Brendan's restrictions). The reading is harder, because we don't want to restrict it and it's really one of this favorite things to do. Again, if we keep trying to engage him and keep him talking while reading than it helps.
A few random notes: we cut out apple juice for a while, because that has been the one constant in Brendan's diet, but didn't see a huge difference so we've gotten lax again...still, it might be worth revisiting. Also, I had been giving him 100mg of B6 each night for the first two weeks, but missed a few nights and didn't notice a difference so I stopped. Then, last week he started sleeping poorly, just tossing and turning a lot and calling out in his sleep. Remember, this coincides to having a lot less time with me during the day (which overall he seems to be adjusting to with very little problem) so it's not conclusive, but I started the B6 again (which is supposed to help with sleep) and he's slept a bit better the past two nights. I'll keep it up and try to report back about whether that is helping. Once we start holding some other variables steady, I'd like to add melatonin into the mix to see if that helps his sleep and maybe even his seizures.
Last complaint: Although we liked the neurologist that we saw most recently, we cannot get his office to call us back or even call in a prescription. I've been told that his regular secretary is on maternity leave, but whatever measures they've taken to cover for her are really failing, and I'm sick of it. Back in February we'd set an appointment at the nearby children's hospital with a neurologist that couldn't see us until July, and I never cancelled that appointment even when we got in with the other guy. Now, I think we'll keep that appointment and see what we think of this other person, just in the hopes that we can keep better lines of communication open. My mom has also gotten some information about more wholistic pediatricians and neurologists, so I'm excited to follow up with them.
Monday, May 23, 2011
Weighing Heavy on the Mind
I wanted to be more organized about my posts and lay out different things I'm thinking about or trying, both to help me organize my thoughts, but also so that it might be of help to others who stumble on this blog. However, I feel a need tonight to just unburden and perhaps even complain a bit. It's ironic really because Brendan is actually doing quite well these days. He's still having an average of about 8 (micro) seizures a day, but almost half of those are while falling asleep (which hardly seem to bother him) and a good portion of the others are in the car seat while in the car (where at least he's safe and secure). That's actually what got me started tonight, searching on the internet for anyone else who has noticed this correlation between seizures while riding in the car seat, or any possible explanation of why that may be. Well, it's nearly two hours later and I've been jumping from forum to forum, googling new ideas or things that have worked for some people. So, that's what I'm complaining about tonight: the pure time that this disorder has taken from my life. It's amazing. I probably average between one and two hours on the internet researching each day. Then there is the additional time making notes about when the seizures occurred, what Brendan has eaten, how much he slept, etc. while searching for clues as to his triggers and tracking his progress. And every time I start complaining I realize how blessed we are in our current situation that Brendan is still developmentally on track and happy and healthy in every other way. All I have to do is spend a few minutes on the forums and have my heart break reading stories of children that will never be the same and never be able to experience the joys and freedoms that my son has. I do appreciate that...fully...every day.
It is funny that it's on the good days, or weeks, that I start to pick up my head and look around and realize exactly how focused on him and worried I have been for weeks on end. The world suddenly seems brighter and easier and just lovely. I've started to grow cautious at these peaks though, because I never fail to start imagining how Brendan will continue to improve and improve until the seizures are a thing of the past.....and then it hits me hard when it doesn't happen quite that way. I've got to work on being optimistic without setting myself up for disappointment. I do feel that I've reached a better place in the past few weeks though, I've made a few major decisions about how to proceed with his medications, etc. and I'm ready to try new things in a methodical way that just overwhelmed me before. Our new step that seems to be working so far is adding 100mg of B6 each day, and starting to cut back on carbs. I'm not ready to jump into any strict diet, although I'm starting to eye the Modified Atkins Diet (MAD), for now it's enough to de-emphasize the carbs and make sure that we have plenty of other options to offer Brendan when he's hungry. Next up we tackle his milk and cold cereal breakfast habit and try to convince him on eggs and breakfast sausages. I actually think that it wont take too much convincing, it's more a matter of dragging myself out of bed early enough to cook so that it's ready when he wakes up and he doesn't have to wait for it.
Baby steps....but we're getting there....and it feels good.
It is funny that it's on the good days, or weeks, that I start to pick up my head and look around and realize exactly how focused on him and worried I have been for weeks on end. The world suddenly seems brighter and easier and just lovely. I've started to grow cautious at these peaks though, because I never fail to start imagining how Brendan will continue to improve and improve until the seizures are a thing of the past.....and then it hits me hard when it doesn't happen quite that way. I've got to work on being optimistic without setting myself up for disappointment. I do feel that I've reached a better place in the past few weeks though, I've made a few major decisions about how to proceed with his medications, etc. and I'm ready to try new things in a methodical way that just overwhelmed me before. Our new step that seems to be working so far is adding 100mg of B6 each day, and starting to cut back on carbs. I'm not ready to jump into any strict diet, although I'm starting to eye the Modified Atkins Diet (MAD), for now it's enough to de-emphasize the carbs and make sure that we have plenty of other options to offer Brendan when he's hungry. Next up we tackle his milk and cold cereal breakfast habit and try to convince him on eggs and breakfast sausages. I actually think that it wont take too much convincing, it's more a matter of dragging myself out of bed early enough to cook so that it's ready when he wakes up and he doesn't have to wait for it.
Baby steps....but we're getting there....and it feels good.
Tuesday, May 17, 2011
Our Epilepsy Journey So Far
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.
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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