It's been 2 weeks since we started the diet and, after some rough going, things have leveled out.
The hardest adjustment for me has been fluid intake. Soren still drinks from a bottle. But he doesn't hold the bottle. So I have to hold him and hold the bottle for him. And while this can be a very sweet time for us, the boy is now 7 years old and keeps on growing! However, I stopped growing many years ago so he's beginning to swamp me. Because of this situation, I would give Soren a bottle of milk in the morning and in the evening. Thus, I knew that Soren was getting 16 oz. of fluids into him a day.
This is not a lot of fluid. I know this. I would try now and again to get a bottle into him after school, but this was hit and miss depending on what therapies he had on any given day. But, in starting the diet, Soren's nutritionist feared (rightly so) that Soren was rather dehydrated. So she wanted me to DOUBLE his fluids.
That meant 2 more bottles. That meant 2 more times I would have to find in the day to sit down and hold him while he drank. Now, Soren can do this in 10 minutes or he can be a pill and take 45 minutes. So the thought of doing this made me incredibly anxious. It would be like having a newborn again.
Plus, one of these bottles HAD to be at lunch time. Now, this is all well and good on the weekends when Soren is with me. But on the weekdays when he's at school? How was that going to work? Soren is REALLY picky about who he allows to give him his bottle. I feared I would have to drive up to school every day for lunch for this, which would really cut into my already packed days.
Fortunately for me, Soren goes to a great school where they love him to pieces. I told his teacher our predicament and she said that his aid would gladly give him a bottle at lunch. I breathed a sigh of relief. Could this possibly work?
Well, the first week of the diet was definitely the roughest. After our 2 1/2 days in the hospital, Soren and were both beat. That night, I was trying to get his last bottle into him, and Soren would not drink. I broke down in tears, wanting to give up then and there. But then Aaron held Soren for an hour while Soren slept on him, out cold. When Soren woke up, he was refreshed and ready to drink and did so lickety split.
The next day, when he went back to school, I showed up to see how Soren was doing with the bottle. He was NOT drinking. So I sat down with him and fed him 80% of the bottle. I then handed him back to his aid and Soren drank the rest down for her. Now that we did that "transition," he's doing a great job for her.
So now Soren is a great job at eating the food and, for the most part, drinking his drinks. He's much more alert, which could be from the diet or the added hydration--or both. He is still having daily seizures, but they are fewer. Only 1-3 a day versus 10-20 a day.
We are going to give the diet a full 3 months and assess the situation then, deciding if the benefits are worth the work. We aren't going to mess with his meds in any way so that we will know, as well as we can, if and good or bad stuff is connected to the diet.
But I will continue to keep you posted on the progress or set-backs we encounter.
Amy
Monday, September 27, 2010
Wednesday, September 15, 2010
Other Advantages from the Diet
Since the beginning of Soren having seizures at 6 months old, the goal has obviously been to get seizure control. With that control, Soren's development and cognition could hopefully proceed. Not that he would necessarily become a typical kid. But without seizure storms attacking his brain, things would have to at least get better. This is all we've ever wanted. Yet, despite all our efforts, it's been impossible for us to achieve.
From what I have gathered of the kids on the Keto Diet, 1/3 get seizure control, 1/3 get a decrease in seizures, and 1/3 have no improvements and stop the diet.
But my Fellow-Roommate Mom in the hospital had a friend who visited whose daughter has been on the diet for a year now. And while her daughter hasn't gotten any seizure control and has actually had to increase meds, she has had great cognitive gains. This little girl went from not being able to read prior to the diet to being able to read since starting.
This is something I had never heard. Progress with seizures? Wow! Now, don't get me wrong. I want these flippin' seizures to stop! Soren turns 7 next week. A decrease or stopping of seizures would be a pretty sweet birthday present. But if he can start making gains despite the seizures, I will be quite thrilled.
Amy
From what I have gathered of the kids on the Keto Diet, 1/3 get seizure control, 1/3 get a decrease in seizures, and 1/3 have no improvements and stop the diet.
But my Fellow-Roommate Mom in the hospital had a friend who visited whose daughter has been on the diet for a year now. And while her daughter hasn't gotten any seizure control and has actually had to increase meds, she has had great cognitive gains. This little girl went from not being able to read prior to the diet to being able to read since starting.
This is something I had never heard. Progress with seizures? Wow! Now, don't get me wrong. I want these flippin' seizures to stop! Soren turns 7 next week. A decrease or stopping of seizures would be a pretty sweet birthday present. But if he can start making gains despite the seizures, I will be quite thrilled.
Amy
Tuesday, September 14, 2010
Keto Diet: Hospital Day 2
I have been told that Day 2 of the Keto Diet is supposed to very hard. The fat starts hitting the system, which can make the child nauseated. Also, because of the lack of carbs, the blood sugar drops and the child can become lethargic.
Well, Soren's blood sugar is actually higher than they expected but he's been sleeping all day. Now this could be because he was a party-boy last night, chatting until the wee hours. It could also be that he's annoyed with this whole situation and has decided to shut down (a common response for Soren).
Either way, while Day 2 hasn't been horribly hard (thank goodness), it hasn't been easy because Soren is so sleepy he's not eating and has been dribbling out a lot of his fluids. The upshot is a frustrated Mommy.
Soren has had some seizures today, which is to be expected. But they are fewer and less intense than usual.
Now if he would just wake up to eat and drink!
Amy
Well, Soren's blood sugar is actually higher than they expected but he's been sleeping all day. Now this could be because he was a party-boy last night, chatting until the wee hours. It could also be that he's annoyed with this whole situation and has decided to shut down (a common response for Soren).
Either way, while Day 2 hasn't been horribly hard (thank goodness), it hasn't been easy because Soren is so sleepy he's not eating and has been dribbling out a lot of his fluids. The upshot is a frustrated Mommy.
Soren has had some seizures today, which is to be expected. But they are fewer and less intense than usual.
Now if he would just wake up to eat and drink!
Amy
Monday, September 13, 2010
Keto Diet: Hospital Day 1
Our first day started super rough. At home, Soren had to start the fast and start drinking a special Keto Shake made up of KetoCal (this vanilla-flavored powder stuff), Applejuice, and Water. Despite telling Soren about it and that he would be drinking a different drink from his usual whole milk, he was clearly not pleased.
Soren is still bottle fed. I popped some of his morning meds in his mouth as usual (he's really good about swallowing these down) and put the bottle nipple in his mouth. Some of the fluid flowed in his mouth and he then chomped his front teeth down on the nipple. This is NEVER a good sign. He always gets a mildly annoyed, devilish look in his eye as if to say, "What the hell is this crap?!"
And then he held it in the back of his mouth. Just waiting. Letting the pills dissolve. Giving me a look like, "I can hold out longer than you, Mom!" Then he began dribbling it out the sides. Remember, I'm supposed to get every drop in the boy. And especially today, because this is all the hydration he's getting!
So I took the nipple out and we continued out stand off. And then Soren did something he's NEVER done to me before. He peed on me getting my lap and his side soaked. Now, granted, this had to do with the angle of his body and that his diaper was gapping. But it seemed like such defiance!
Then he sneezed. Fortunately, it wasn't a spray sneeze. And at the end of his sneeze, he swallowed all that was left in his mouth. That was the BEST thing that could have happened. Suddenly he realized that I wasn't feeding him poison. In fact, the look he gave me told me that he kind of liked it. He then proceeded to drink the rest of the bottle down without incident and I got all his meds in. Whew!
Granted, I then had to bathe him and hose myself off a bit. But we survived.
Since then, all has been running smoothly. Soren has sucked down his past 2 shakes with no problem. We have snuggled and all is forgiven. And we only 3 more shakes to go today!
We are now in Huntington, checked into a very large room we're sharing with another family starting the Keto Diet. This is actually rather nice, since the other boy's Mom knows WAY more than me (she's done the diet before). As usual, I'm learning off other people's experience!
Soren is about to get hooked up to the EEG/Telemetry to monitor his seizures and we will really be on our way!
Amy
Soren is still bottle fed. I popped some of his morning meds in his mouth as usual (he's really good about swallowing these down) and put the bottle nipple in his mouth. Some of the fluid flowed in his mouth and he then chomped his front teeth down on the nipple. This is NEVER a good sign. He always gets a mildly annoyed, devilish look in his eye as if to say, "What the hell is this crap?!"
And then he held it in the back of his mouth. Just waiting. Letting the pills dissolve. Giving me a look like, "I can hold out longer than you, Mom!" Then he began dribbling it out the sides. Remember, I'm supposed to get every drop in the boy. And especially today, because this is all the hydration he's getting!
So I took the nipple out and we continued out stand off. And then Soren did something he's NEVER done to me before. He peed on me getting my lap and his side soaked. Now, granted, this had to do with the angle of his body and that his diaper was gapping. But it seemed like such defiance!
Then he sneezed. Fortunately, it wasn't a spray sneeze. And at the end of his sneeze, he swallowed all that was left in his mouth. That was the BEST thing that could have happened. Suddenly he realized that I wasn't feeding him poison. In fact, the look he gave me told me that he kind of liked it. He then proceeded to drink the rest of the bottle down without incident and I got all his meds in. Whew!
Granted, I then had to bathe him and hose myself off a bit. But we survived.
Since then, all has been running smoothly. Soren has sucked down his past 2 shakes with no problem. We have snuggled and all is forgiven. And we only 3 more shakes to go today!
We are now in Huntington, checked into a very large room we're sharing with another family starting the Keto Diet. This is actually rather nice, since the other boy's Mom knows WAY more than me (she's done the diet before). As usual, I'm learning off other people's experience!
Soren is about to get hooked up to the EEG/Telemetry to monitor his seizures and we will really be on our way!
Amy
Wednesday, September 08, 2010
Keto Diet Step 3: Calculating and Measuring
The next step was for me to get trained in the Keto Diet. And the first part of this was buying a scale that measures by the gram. Every morning when I turn this on, I have to calibrate the scale to make sure that it weighting properly.
Next, I needed to make up Ketogenic Diet menus for Soren. Thankfully, I am working with a lovely dietitian at the Epilepsy and Brain Mapping Program in Pasadena who led me to the Ketocalculator site where she had done a number of these for me already and taught me how to do it myself.
And it's kinda fun. You choose a category--protein, fat, carbs--and punch in the what goes in recipe--egg, butter, avocado, lime juice, salsa. Then you put in how many grams of each you think you might need to get the correct ratio.
Soren is going on a 4:1 ratio. Now if I'm understanding this right, the 4 in this is the amount of fat to the 1 which is the amount of protein and the carbs added together. And I would try to describe the next part of the calculations, but frankly it baffles me. Basically I sit there clicking numbers up and down until everything adds up correctly.
Here's a sample menu for Tilapia Avocado
5 grams of lime juice
21 grams of tilapia
18 grams of butter
24 grams of avocado
60 grams of heavy cream (to drink, not to mix in the food)
So the next step is for me to measure this out on the scale. And I must do this EXACTLY. Don't go up to 21.1 grams of tilapia! But this part is kind of fun too (at least right now) which is a surprise since I am the LEAST scientific person I know!
Last, I mash up all that deliciousness and get Soren to eat EVERY BIT!!! As in scrape the bottom of the bowl and get every morsel in you can. And this has to be done at THAT DESIGNATED meal time. If he doesn't eat the whole thing, I can't feed it to him later. The "good" thing is that the meals are so small, Soren will probably wolf it down in seconds. The bad thing is I'm afraid he'll be hungry (though being in ketosis is supposed to curb your appetite).
Next up...Soren goes into the hospital for his controlled fasting into the land of Ketosis.
Next, I needed to make up Ketogenic Diet menus for Soren. Thankfully, I am working with a lovely dietitian at the Epilepsy and Brain Mapping Program in Pasadena who led me to the Ketocalculator site where she had done a number of these for me already and taught me how to do it myself.
And it's kinda fun. You choose a category--protein, fat, carbs--and punch in the what goes in recipe--egg, butter, avocado, lime juice, salsa. Then you put in how many grams of each you think you might need to get the correct ratio.
Soren is going on a 4:1 ratio. Now if I'm understanding this right, the 4 in this is the amount of fat to the 1 which is the amount of protein and the carbs added together. And I would try to describe the next part of the calculations, but frankly it baffles me. Basically I sit there clicking numbers up and down until everything adds up correctly.
Here's a sample menu for Tilapia Avocado
5 grams of lime juice
21 grams of tilapia
18 grams of butter
24 grams of avocado
60 grams of heavy cream (to drink, not to mix in the food)
So the next step is for me to measure this out on the scale. And I must do this EXACTLY. Don't go up to 21.1 grams of tilapia! But this part is kind of fun too (at least right now) which is a surprise since I am the LEAST scientific person I know!
Last, I mash up all that deliciousness and get Soren to eat EVERY BIT!!! As in scrape the bottom of the bowl and get every morsel in you can. And this has to be done at THAT DESIGNATED meal time. If he doesn't eat the whole thing, I can't feed it to him later. The "good" thing is that the meals are so small, Soren will probably wolf it down in seconds. The bad thing is I'm afraid he'll be hungry (though being in ketosis is supposed to curb your appetite).
Next up...Soren goes into the hospital for his controlled fasting into the land of Ketosis.
Keto Diet Step 2: Learning About the Diet
So with Soren having passed the blood test, I bought the Ketogenic Diet book and started reading up.
The main question on my mind was, "Why does the diet work?"
Simple answer: They don't know.
The longer answer is that fasting has been used since biblical times. I guess Jesus didn't actually heal the boy with epilepsy, he just didn't feed him. "No loaves and fishes for you!"
But seriously folks, fasting has been used for a LONG time. Many years later, the doctors at Johns Hopkins worked on doing it in a controlled fashion. One of the key parts of that is going into ketosis. Now, when you're in ketosis (which is what happens on the Atkins diet), your body THINKS you're fasting and starts feeding on your fat. But on the Atkins diet you're eating WAY less fat, thus you burn your stored fat and lose weight. On the Keto Diet, you're eating a VERY HIGH amount of fat. And for some reason, in some people, this can help control seizures.
Early on, there was only one version of the Ketogenic Diet. But now there are variations. There's a modified Atkins Keto Diet and a Low-glycemic-index Keto Diet. These versions are WAY less restrictive than the real Keto Diet. However, the problem is that if you don't get seizure control using either of these versions, it doesn't mean that you wouldn't get control on the real Keto Diet. However, if you don't succeed on the real Keto Diet, than no other versions of it will work.
So we could have inched into the whole Keto Diet experience, doing either the Atkins or Low-glycemic-index versions. But that seemed silly. So instead, we're jumping right into the deep end and doing the full-on Keto Diet.
Next up, more on actually performing the diet.
Amy
The main question on my mind was, "Why does the diet work?"
Simple answer: They don't know.
The longer answer is that fasting has been used since biblical times. I guess Jesus didn't actually heal the boy with epilepsy, he just didn't feed him. "No loaves and fishes for you!"
But seriously folks, fasting has been used for a LONG time. Many years later, the doctors at Johns Hopkins worked on doing it in a controlled fashion. One of the key parts of that is going into ketosis. Now, when you're in ketosis (which is what happens on the Atkins diet), your body THINKS you're fasting and starts feeding on your fat. But on the Atkins diet you're eating WAY less fat, thus you burn your stored fat and lose weight. On the Keto Diet, you're eating a VERY HIGH amount of fat. And for some reason, in some people, this can help control seizures.
Early on, there was only one version of the Ketogenic Diet. But now there are variations. There's a modified Atkins Keto Diet and a Low-glycemic-index Keto Diet. These versions are WAY less restrictive than the real Keto Diet. However, the problem is that if you don't get seizure control using either of these versions, it doesn't mean that you wouldn't get control on the real Keto Diet. However, if you don't succeed on the real Keto Diet, than no other versions of it will work.
So we could have inched into the whole Keto Diet experience, doing either the Atkins or Low-glycemic-index versions. But that seemed silly. So instead, we're jumping right into the deep end and doing the full-on Keto Diet.
Next up, more on actually performing the diet.
Amy
Friday, September 03, 2010
Keto Diet Step 1: Blood Work
People have been asking how Soren is doing on the Keto Diet and I realized I should do an update. He actually hasn't started the diet yet because there are some steps you have to go through beforehand and the first of these is blood work.
They basically have to check and make sure what Soren's levels are on various things so they have a baseline. Plus, they check if he has any metabolic disorders which would prevent him from being a candidate for the diet.
Now getting blood work sounds easy enough, right? Wrong. The amount of blood for all these tests was just crazy. The lab said they would have to do them in-house so they wouldn't have to draw as much from his little body.
Because we were getting blood work done for both the Keto Diet and to check his med levels, Soren had to be fasting and not had his morning meds. So back in July, Aaron took Soren in to get this done. It went smoothly, Soren was a trooper, blood was drawn.
But that was just the beginning. They also needed a fasting/med-free urine sample. Now, Soren doesn't just pee in a cup like you and me. Instead, we have to put this goofy urine collection condom thing over his penis and wait for him to be inspired. The lab didn't have these things at this location. So the next week, I had to drive to their other lab in Azusa to get this. Oy!
Long story short, they gave me 2 baggies, I tried two mornings, Soren was not in the mood to pee. So then I had to get another from his pediatrician's office (just a short drive to Pasadena). I delivered the pee and figured all was good.
But then I got a call from the lab saying that they didn't draw enough blood for all the tests. We we needed to go, yet again, with Soren food and med free. We arrive only to be told by the lab tech that they don't have the kit for one of the blood draws. What the...?
Well, now that's all been resolved and Soren is signed up to start the Keto Diet on September 13th.
But in August, I started my Keto Diet training, which I will fill you in on in my next entry.
Amy
They basically have to check and make sure what Soren's levels are on various things so they have a baseline. Plus, they check if he has any metabolic disorders which would prevent him from being a candidate for the diet.
Now getting blood work sounds easy enough, right? Wrong. The amount of blood for all these tests was just crazy. The lab said they would have to do them in-house so they wouldn't have to draw as much from his little body.
Because we were getting blood work done for both the Keto Diet and to check his med levels, Soren had to be fasting and not had his morning meds. So back in July, Aaron took Soren in to get this done. It went smoothly, Soren was a trooper, blood was drawn.
But that was just the beginning. They also needed a fasting/med-free urine sample. Now, Soren doesn't just pee in a cup like you and me. Instead, we have to put this goofy urine collection condom thing over his penis and wait for him to be inspired. The lab didn't have these things at this location. So the next week, I had to drive to their other lab in Azusa to get this. Oy!
Long story short, they gave me 2 baggies, I tried two mornings, Soren was not in the mood to pee. So then I had to get another from his pediatrician's office (just a short drive to Pasadena). I delivered the pee and figured all was good.
But then I got a call from the lab saying that they didn't draw enough blood for all the tests. We we needed to go, yet again, with Soren food and med free. We arrive only to be told by the lab tech that they don't have the kit for one of the blood draws. What the...?
Well, now that's all been resolved and Soren is signed up to start the Keto Diet on September 13th.
But in August, I started my Keto Diet training, which I will fill you in on in my next entry.
Amy
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