It has been a busy summer and, thus, I have not gotten around to posting.
The great news is that Soren is still doing really well on the diet. But, of course, there have been some bumps in the road.
June--Due to an ear infection, Soren had to be on 3 rounds of antibiotics. During this time I, somewhat foolishly, tried to continue to wean him off Depakote. It was down to 1 morning and 1 evening dose. I cut the morning dose during this whole antibiotic thing. Soren had a few strong seizures, so I assumed this was related to the Depakote and put the morning dose back.
However, at this same exact time, I started him on his 3rd antibiotic. The doctor who prescribed it was from an Urgent Care in Carpinteria. Super nice doctor, but I don't think he fully understood the Keto Diet (why would he?) and the antibiotic prescribed had too many Carbs in it! So, I took him off this as well.
Once I put the Depakote back and stopped the antibiotic, the seizures stopped. The question was, which of these was really affecting Soren?
July--We went to the neurologist and discovered the possible answer. Being on antibiotics can lower one's seizure threshold! So being on 3 rounds of antibiotics can REALLY lower one's seizure threshold. (not to mention that the ear infection itself lowers the seizure threshold)
Now that Soren was clear of his infection, she encouraged me to continue Soren's Depakote wean. So I eliminated the morning dose, and we didn't have any side effects. In fact, Soren didn't have any seizures in July!
August--I was now ready to drop out Soren's last evening dose of Depakote. His doctor advised me to give him half for a couple weeks before cutting it out completely. She warned me that Soren may have withdrawal seizures at this point. And, sure enough, I started the wean on Sunday and he had 2 big seizures this week. Poor guy!
The other thing I had to do this month was get Soren's blood drawn so they could check how things are going on since he's been on the Keto Diet.
One benefit of the Keto Diet has been that Soren's had a lot more energy and "tells" us when he likes or doesn't like something.
The problem is, when he doesn't like something, he puts up quite a fuss! This makes drawing blood REALLY difficult. I mentioned this to his neurologist and she gave me the okay to give Soren some "relaxing medicine" to mellow him out. So I did that this morning and the blood draw went off without a hitch.
School starts on Monday and I think Soren's really going to be happy to be back. We're just not as fun and exciting as all his friends.
Amy
Friday, August 26, 2011
Friday, June 03, 2011
Keto through Colds
Hey all,
Today I was going to very happily post how well Soren is doing. And then he had a big, awful seizure during breakfast. Poor kid. What a way to start the day!
Still, the boy is doing great. Especially considering he's been sick for about a month! He caught a cold Mother's Day weekend. Despite that, he didn't have any seizures. Until the NEXT weekend! That seizure marked the end of a 6 week stint with no seizures! Not to shabby!
Especially since just a few days later, I found out that Soren's cold had led to a raging ear infection in his left ear. So the fact that he only had 1 seizure through that was very impressive. So Soren went on antibiotics to clear the ear infection. (And probiotics to help his tummy)
But then on the day of his last dose, last Friday, he caught ANOTHER cold! We went in for an ear recheck this past Tuesday and while the infection in his left ear was better, he now has one in his RIGHT EAR!!! So another round of antibiotics was started. Soren is clearly feeling better. Still, this has taken quite a toll on him, so it's no wonder he had another seizure.
We're hoping with this round of antibiotics we'll get him all cleared up and healthy going into the summer. (Of course, I just caught my 3rd cold of this year. Ugh!)
A note on getting through colds on the Keto Diet. We can't use regular, children's meds because they have sugar in them! So, no Dimatap or Motrin. Instead he got Tylenol suppositories, nasal decongestants, and Vicks Vapo Rub. And for his antibiotic, we can't do the liquid stuff. Instead, I crushed up non-coated pills and put them in his food. Yuck!
And then there was the challenge of getting fluids in him. Turns out, Soren loves warm chicken broth, which is allowed on the diet and really seemed to sooth him.
All in all, though, Soren is doing great and has been quite a trooper through a tough time.
Amy
Today I was going to very happily post how well Soren is doing. And then he had a big, awful seizure during breakfast. Poor kid. What a way to start the day!
Still, the boy is doing great. Especially considering he's been sick for about a month! He caught a cold Mother's Day weekend. Despite that, he didn't have any seizures. Until the NEXT weekend! That seizure marked the end of a 6 week stint with no seizures! Not to shabby!
Especially since just a few days later, I found out that Soren's cold had led to a raging ear infection in his left ear. So the fact that he only had 1 seizure through that was very impressive. So Soren went on antibiotics to clear the ear infection. (And probiotics to help his tummy)
But then on the day of his last dose, last Friday, he caught ANOTHER cold! We went in for an ear recheck this past Tuesday and while the infection in his left ear was better, he now has one in his RIGHT EAR!!! So another round of antibiotics was started. Soren is clearly feeling better. Still, this has taken quite a toll on him, so it's no wonder he had another seizure.
We're hoping with this round of antibiotics we'll get him all cleared up and healthy going into the summer. (Of course, I just caught my 3rd cold of this year. Ugh!)
A note on getting through colds on the Keto Diet. We can't use regular, children's meds because they have sugar in them! So, no Dimatap or Motrin. Instead he got Tylenol suppositories, nasal decongestants, and Vicks Vapo Rub. And for his antibiotic, we can't do the liquid stuff. Instead, I crushed up non-coated pills and put them in his food. Yuck!
And then there was the challenge of getting fluids in him. Turns out, Soren loves warm chicken broth, which is allowed on the diet and really seemed to sooth him.
All in all, though, Soren is doing great and has been quite a trooper through a tough time.
Amy
Sunday, April 10, 2011
Keto Update: 7 Months
Soren is going in for his 7 Month Keto Check-up tomorrow, so I figured it was about time I did another update!
The great news is that Soren is continuing to do fantastic on the diet. When we decreased his calories to 1000/day, we got his seizures down to 2-3 a week. These seizures usually happened on Sunday and Monday, which indicated to me that they were triggered when Soren wasn't burning as many calories as he did at school (and then he was still ramping up on Monday). I even tried to increase his activity on the weekend, but I just couldn't get him as active as he is at school.
His Keto dietitian gave me the okay to drop Soren down another 100 calories bringing him to 900 a day. This meant adjusting all his menus, but it was totally worth it. Soren had 2 weeks without any seizures and then had one last Saturday. But now he has gone another week without any. So clearly this drop in calories has made him more ketotic. And with deeper ketosis, we have better control!
Because of the decrease in seizures, Soren is continuing to get more expressive. He is now making amazing noises that he never did as a baby. He's experimenting with his voice and really working on communicating. If only we understood Soren Speak!
Another bonus is we are getting smiles and laughs back again. He seems to give much more at school than at home. But even we've gotten a few good rounds of giggles recently.
My next goal is to get Soren off Depakote. He was on 3 pills twice a day and I've gotten him down to 2 twice a day. We'll see what his neurologist says tomorrow, but I'm hoping over the next 4 months I can get rid of it completely! Amy
The great news is that Soren is continuing to do fantastic on the diet. When we decreased his calories to 1000/day, we got his seizures down to 2-3 a week. These seizures usually happened on Sunday and Monday, which indicated to me that they were triggered when Soren wasn't burning as many calories as he did at school (and then he was still ramping up on Monday). I even tried to increase his activity on the weekend, but I just couldn't get him as active as he is at school.
His Keto dietitian gave me the okay to drop Soren down another 100 calories bringing him to 900 a day. This meant adjusting all his menus, but it was totally worth it. Soren had 2 weeks without any seizures and then had one last Saturday. But now he has gone another week without any. So clearly this drop in calories has made him more ketotic. And with deeper ketosis, we have better control!
Because of the decrease in seizures, Soren is continuing to get more expressive. He is now making amazing noises that he never did as a baby. He's experimenting with his voice and really working on communicating. If only we understood Soren Speak!
Another bonus is we are getting smiles and laughs back again. He seems to give much more at school than at home. But even we've gotten a few good rounds of giggles recently.
My next goal is to get Soren off Depakote. He was on 3 pills twice a day and I've gotten him down to 2 twice a day. We'll see what his neurologist says tomorrow, but I'm hoping over the next 4 months I can get rid of it completely! Amy
Sunday, January 23, 2011
Keto Update: 4 months +
I have a calendar where we mark how many seizures has each day. And there was a definite increase in December compared to the prior months on the diet. Still, it was less than before we even started.
Now, this could have been caused by a few things. 1.) We started weaning him off one of his meds. Granted, we were taking this VERY slow (only dropping out 1 of the 6 pills he had during the day), but coming off anti-seizure meds can be rough, even if you take it slow. 2.) The diet wasn't quite tweaked as well as we wanted, which is also possible because it's new! or 3.) An unexplained crappy month of seizures.
So, before his next neurologist appointment, Soren had his massive amount of blood work done. (which no matter how well I plan, always finds a new way to be horrible)
At Soren's last neurologist/dietician appointment, we discovered that Soren was not as ketotic in December as he was in October. He definitely was in ketosis (I knew that from the urine ketostix), but the blood work is, of course, more exact and provides real numbers.
Now, less ketosis means less seizure control. So finding out the cause is REALLY important!
But WHY was he less ketotic? I was feeding him the same exact foods. And Soren doesn't go around grabbing a cookie or a handful of chips. Well, the other thing we noted that was Soren, like many people during the holidays, had put on some weight. About 3 lbs. Again, this is the opposite of how the diet is supposed to work. If anything you lose weight!
The most likely answer is calories. Soren is on 1200 calories a day. Now, personally, I've thought this was kind of high from the beginning. (Actually, he started on 1300 and we dropped it after the 1st month.)
I mean, Soren's not running around like most kids. He's just not burning calories like a typical 7 year old. Plus, in December he was out of school for a chunk of the month (and specifically when I got his blood work done). So, he was probably burning even fewer calories because getting wheeled around in his chair while Mom Christmas shops is less than aerobic.
The solution? Drop his calories another 100.
And while I wanted to continue weaning him from Depakote, we decided to pause until we could determine if this calorie drop helped decrease his seizures.
I am happy to say that it appears to be working. I haven't seen any seizures for 4 days, which is our longest stretch in a while.
So let's cross our fingers that this calorie decrease makes Soren more ketotic and he gets better seizure control!
Amy
Now, this could have been caused by a few things. 1.) We started weaning him off one of his meds. Granted, we were taking this VERY slow (only dropping out 1 of the 6 pills he had during the day), but coming off anti-seizure meds can be rough, even if you take it slow. 2.) The diet wasn't quite tweaked as well as we wanted, which is also possible because it's new! or 3.) An unexplained crappy month of seizures.
So, before his next neurologist appointment, Soren had his massive amount of blood work done. (which no matter how well I plan, always finds a new way to be horrible)
At Soren's last neurologist/dietician appointment, we discovered that Soren was not as ketotic in December as he was in October. He definitely was in ketosis (I knew that from the urine ketostix), but the blood work is, of course, more exact and provides real numbers.
Now, less ketosis means less seizure control. So finding out the cause is REALLY important!
But WHY was he less ketotic? I was feeding him the same exact foods. And Soren doesn't go around grabbing a cookie or a handful of chips. Well, the other thing we noted that was Soren, like many people during the holidays, had put on some weight. About 3 lbs. Again, this is the opposite of how the diet is supposed to work. If anything you lose weight!
The most likely answer is calories. Soren is on 1200 calories a day. Now, personally, I've thought this was kind of high from the beginning. (Actually, he started on 1300 and we dropped it after the 1st month.)
I mean, Soren's not running around like most kids. He's just not burning calories like a typical 7 year old. Plus, in December he was out of school for a chunk of the month (and specifically when I got his blood work done). So, he was probably burning even fewer calories because getting wheeled around in his chair while Mom Christmas shops is less than aerobic.
The solution? Drop his calories another 100.
And while I wanted to continue weaning him from Depakote, we decided to pause until we could determine if this calorie drop helped decrease his seizures.
I am happy to say that it appears to be working. I haven't seen any seizures for 4 days, which is our longest stretch in a while.
So let's cross our fingers that this calorie decrease makes Soren more ketotic and he gets better seizure control!
Amy
Monday, December 27, 2010
Keto Update: 3 1/2 Months
Sorry for the terrible delay in this update. I think I kept waiting for things to settle down with the diet and Soren's seizures, but since they don't seem to be, I better do an update on the current state of things!
Soren is doing fine on the diet, but his seizures have increased compared to that wonderful 2 weeks without any activity. He's having 1-2 a day, ranging from very mild to big whompers. Still, it's less than he was having prior to the diet, so that is good. And he seems to recover quicker than before, which is also good.
And while we don't have the seizure control we'd been hoping for, Soren continues to be much more happy and alert. He's making lots of interesting noises, really making use of his voice. We get more little smiles and he is taking fewer cat naps. So we still feel that the benefits of the diet are outweighing the inconvenience.
I think the trickiest factor in full seizure control is making sure Soren eats and drinks every bit of the diet. There are days where he'll eat just fine, but then he won't drink the cream at the end of his meal. Without drinking this, he isn't getting a fully balanced Ketogenic meal. And without this, seizures are more likely to occur (which is what we are witnessing).
However, there are two ways to get a fully balanced keto meal into him. Through the KetoCal shakes and through a special Egg Nog recipe (heavy cream, egg beaters, and vanilla). Whether he drinks one drop or the whole bottle, eat sip is Ketogenically balanced. So, since Soren is on Winter Break from school, I've decided to try an experiment. I'm going to put Soren on an all-liquid, fully balanced Keto Diet to see if we get better seizure control.
The only hitch I can see with this is that Soren will get bored with these two meals of Keto shakes and Egg Nog. The good thing about the shakes is that I mix them with Powerade Zero, which has many flavors for variety. So we'll see if Soren is hip to this and if it decreases his seizures.
I will report the findings of this latest experiment as soon as I have them!
Amy
Soren is doing fine on the diet, but his seizures have increased compared to that wonderful 2 weeks without any activity. He's having 1-2 a day, ranging from very mild to big whompers. Still, it's less than he was having prior to the diet, so that is good. And he seems to recover quicker than before, which is also good.
And while we don't have the seizure control we'd been hoping for, Soren continues to be much more happy and alert. He's making lots of interesting noises, really making use of his voice. We get more little smiles and he is taking fewer cat naps. So we still feel that the benefits of the diet are outweighing the inconvenience.
I think the trickiest factor in full seizure control is making sure Soren eats and drinks every bit of the diet. There are days where he'll eat just fine, but then he won't drink the cream at the end of his meal. Without drinking this, he isn't getting a fully balanced Ketogenic meal. And without this, seizures are more likely to occur (which is what we are witnessing).
However, there are two ways to get a fully balanced keto meal into him. Through the KetoCal shakes and through a special Egg Nog recipe (heavy cream, egg beaters, and vanilla). Whether he drinks one drop or the whole bottle, eat sip is Ketogenically balanced. So, since Soren is on Winter Break from school, I've decided to try an experiment. I'm going to put Soren on an all-liquid, fully balanced Keto Diet to see if we get better seizure control.
The only hitch I can see with this is that Soren will get bored with these two meals of Keto shakes and Egg Nog. The good thing about the shakes is that I mix them with Powerade Zero, which has many flavors for variety. So we'll see if Soren is hip to this and if it decreases his seizures.
I will report the findings of this latest experiment as soon as I have them!
Amy
Friday, November 12, 2010
Keto Update: 2 Months
Two months in, I have to say, Soren is still doing remarkably well on this diet. Our total number of seizures from October 11-November 11 was 16! Considering Soren could previously have 16 seizures in a day, that's flippin' awesome!
This low number is because we have a GREAT 2 weeks of seizure freedom. It was amazing to see how much more alert and vocal Soren was during this weeks. We started seeing more hits of smiles and laughs. He was interactive and happy.
And it wasn't only Soren who felt this way. All of us were so much happier. Suddenly we all realized that we didn't tense up every time Soren made a suspicious sound. We didn't have to run over to Soren when we heard him seizing. We didn't have to make hash-marks on the seizure calendar. It like we could all breathe a little easier.
Then he caught a cold and with the cold came the seizures. Still, even though his defenses were down and the seizures returned, there were significantly fewer than prior to the diet.
The bummer was that after the cold, the seizures didn't immediately go away, which is what I was hoping. They did, however, taper down. But the hard thing was that we had that sadness back. He'd have a seizure and our hearts would sink. And we had something wonderful to compare this feeling to because of those 2 weeks.
BUT, we have now had 2 days without seizures. So we're crossing our fingers that this streak will continue and that we can all find that happy place again.
Amy
This low number is because we have a GREAT 2 weeks of seizure freedom. It was amazing to see how much more alert and vocal Soren was during this weeks. We started seeing more hits of smiles and laughs. He was interactive and happy.
And it wasn't only Soren who felt this way. All of us were so much happier. Suddenly we all realized that we didn't tense up every time Soren made a suspicious sound. We didn't have to run over to Soren when we heard him seizing. We didn't have to make hash-marks on the seizure calendar. It like we could all breathe a little easier.
Then he caught a cold and with the cold came the seizures. Still, even though his defenses were down and the seizures returned, there were significantly fewer than prior to the diet.
The bummer was that after the cold, the seizures didn't immediately go away, which is what I was hoping. They did, however, taper down. But the hard thing was that we had that sadness back. He'd have a seizure and our hearts would sink. And we had something wonderful to compare this feeling to because of those 2 weeks.
BUT, we have now had 2 days without seizures. So we're crossing our fingers that this streak will continue and that we can all find that happy place again.
Amy
Monday, October 11, 2010
Keto Update: 1 Month
We are at the 1 month mark on the Keto Diet and I am happy to say that things are going well! It took a bit of adjustment for everyone. Soren was not accustomed to the new flavors of his Keto Cal vanilla formula beverages. I was not used to having to give him fluids after school (and frankly, he was a little thrown by it as well). Getting temperatures right on the drinks was tricky--not too hot or too cold. Realizing that when I prepare meals in advance and stick them in the fridge, the butter in the meal hardens up so I have to give it some "softening time" before feeding Soren.
But we're adjusting well and the results are really positive. Week 1, Soren had 38 seizures (ugh). Week 2, 19 seizures (hmmmm). Week 3, 17 seizures (is this worth it?). Week 4, 9 seizures! In fact, I didn't see any seizures for 4 days! He had two very quick ones this morning and bounced back from them really fast.
Also, Soren's energy level has increased and he's "chatting" more. Because the meals are so small, he begins insisting on them when it's meal time and wolfs them down. He wakes up bright eyed.
The only hitch we've run into is that he's gaining weight! Despite the heavy fat content, this is NOT supposed to happen because he's in ketosis, which burns the fat. And gaining weight (as long as it's not growth related) can impeded seizure control.
But the dude has a belly now! And, his PT has noticed that he's not standing as well as he was prior to the diet. It's as if his muscles can't handle this new weight gain.
So we met with the dietitian today and I'm going to try and cut 100 calories from his snack. I honestly don't know if this will fly. Soren comes home from school HUNGRY. I mix the Keto Cal with very warm water and Powerade Zero. So now, it will just be warm water and Powerade! Ugh.
But, if it works, good things will most likely come from it. First, the weight loss. Second, he could go even deeper into ketosis. And because of those two, he could get even better seizure control!
Wish us luck on this next "adjustment!"
Amy
But we're adjusting well and the results are really positive. Week 1, Soren had 38 seizures (ugh). Week 2, 19 seizures (hmmmm). Week 3, 17 seizures (is this worth it?). Week 4, 9 seizures! In fact, I didn't see any seizures for 4 days! He had two very quick ones this morning and bounced back from them really fast.
Also, Soren's energy level has increased and he's "chatting" more. Because the meals are so small, he begins insisting on them when it's meal time and wolfs them down. He wakes up bright eyed.
The only hitch we've run into is that he's gaining weight! Despite the heavy fat content, this is NOT supposed to happen because he's in ketosis, which burns the fat. And gaining weight (as long as it's not growth related) can impeded seizure control.
But the dude has a belly now! And, his PT has noticed that he's not standing as well as he was prior to the diet. It's as if his muscles can't handle this new weight gain.
So we met with the dietitian today and I'm going to try and cut 100 calories from his snack. I honestly don't know if this will fly. Soren comes home from school HUNGRY. I mix the Keto Cal with very warm water and Powerade Zero. So now, it will just be warm water and Powerade! Ugh.
But, if it works, good things will most likely come from it. First, the weight loss. Second, he could go even deeper into ketosis. And because of those two, he could get even better seizure control!
Wish us luck on this next "adjustment!"
Amy
Monday, September 27, 2010
Keto Update: Two Weeks
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
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
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
Wednesday, July 14, 2010
Keto-Time!
For the past year (maybe longer) Soren has been having a really hard time with seizures. Currently he has anywhere from 2 tonic seizures to a cluster of 26 seizures a day. Sometimes even a combo of both.
We've been playing with meds. We never wanted Soren on more than 3 meds. Currently he's on 4. I'm weaning him off one so he'll be back at three. Ideally, he'd only be on 2. Well, ideally he'd be on none.
Which leads me to the Ketogenic Diet. The Keto Diet--where you put the body into a state of ketosis as in the Atkins diet--works really well for certain kids with seizures. We almost did it about back in 2005, but then we started Lamictal and Soren had a really good, almost seizure-free year. It was amazing!
So we put off the diet. For 5 years. And we've avoided it because all we've heard from parents is what a HUGE challenge it is. You have to weigh EVERYTHING. You have to get every bit of food into your child. I just wasn't up for it.
But after this year, with the encouragement of our new doctor, we've decided to give it a try. I mean, weighing food may be a pain, but watching Soren seize like this daily is far worse. Plus, since Soren only eats what we give him, the only "hard" part will be the food prep.
So now I'm trying out high-fat, low-carb foods on him. Giving him heaving whipping cream to drink. Adding sour cream to his avocado. Mixing ground bacon into his eggs cooked in butter.
After we figure out foods he likes, I'll learn to weigh them properly. And after I master that, Soren gets checked into the hospital for a 3-day detox off carbs.
If this works, his seizures will decrease! If it really works, he'll be seizure-free. If it works for a while, we will hopefully be able to decrease his meds. Some kids are just on the diet, seizure-free, and completely med-free. That would be amazing! Soren has been on AEDs since he was 6 months old!
But for now, I'm playing with the foods and asking, "Would you like some extra fat with that fat?" and answering, "Why, yes, I would!"
Amy
We've been playing with meds. We never wanted Soren on more than 3 meds. Currently he's on 4. I'm weaning him off one so he'll be back at three. Ideally, he'd only be on 2. Well, ideally he'd be on none.
Which leads me to the Ketogenic Diet. The Keto Diet--where you put the body into a state of ketosis as in the Atkins diet--works really well for certain kids with seizures. We almost did it about back in 2005, but then we started Lamictal and Soren had a really good, almost seizure-free year. It was amazing!
So we put off the diet. For 5 years. And we've avoided it because all we've heard from parents is what a HUGE challenge it is. You have to weigh EVERYTHING. You have to get every bit of food into your child. I just wasn't up for it.
But after this year, with the encouragement of our new doctor, we've decided to give it a try. I mean, weighing food may be a pain, but watching Soren seize like this daily is far worse. Plus, since Soren only eats what we give him, the only "hard" part will be the food prep.
So now I'm trying out high-fat, low-carb foods on him. Giving him heaving whipping cream to drink. Adding sour cream to his avocado. Mixing ground bacon into his eggs cooked in butter.
After we figure out foods he likes, I'll learn to weigh them properly. And after I master that, Soren gets checked into the hospital for a 3-day detox off carbs.
If this works, his seizures will decrease! If it really works, he'll be seizure-free. If it works for a while, we will hopefully be able to decrease his meds. Some kids are just on the diet, seizure-free, and completely med-free. That would be amazing! Soren has been on AEDs since he was 6 months old!
But for now, I'm playing with the foods and asking, "Would you like some extra fat with that fat?" and answering, "Why, yes, I would!"
Amy
Thursday, June 03, 2010
Update on Senate Bill 1051
Thanks to the outpouring of support from all of you, the Diastat bill (SB 1051) has passed through the Senate Education and Health Committees.
Unfortunately, this past week, Senate Leadership put the bill in the "suspense" file, placing it on hold due to STRONG UNION OPPOSITION. Both the California Teachers Association and the California Nurses Association oppose this bill. And while I LOVE TEACHERS and NURSES, their unions opposing this bill only hurts our kids with epilepsy.
But, there is still hope because Senate Leadership has the power to free this bill from the Appropriations Committee. And YOU can make the difference!
Please help kids like Soren by taking less than two minutes to call Senate Leadership urging them to free the bill and protect the 63,000 California school children with epilepsy.
Contact Information:
Senator Steinberg (Senate Pro Tem President): (916) 651-4006
Senator Christine Kehoe (Senate Appropriations Committee Chair): (916) 651-4039
Message:
I am calling to support SB 1051.
If they ask for more specifics, say ask them to please release this bill from Appropriations and protect children with epilepsy.
THANK YOU ALL SO MUCH!!!
Amy
Unfortunately, this past week, Senate Leadership put the bill in the "suspense" file, placing it on hold due to STRONG UNION OPPOSITION. Both the California Teachers Association and the California Nurses Association oppose this bill. And while I LOVE TEACHERS and NURSES, their unions opposing this bill only hurts our kids with epilepsy.
But, there is still hope because Senate Leadership has the power to free this bill from the Appropriations Committee. And YOU can make the difference!
Please help kids like Soren by taking less than two minutes to call Senate Leadership urging them to free the bill and protect the 63,000 California school children with epilepsy.
Contact Information:
Senator Steinberg (Senate Pro Tem President): (916) 651-4006
Senator Christine Kehoe (Senate Appropriations Committee Chair): (916) 651-4039
Message:
I am calling to support SB 1051.
If they ask for more specifics, say ask them to please release this bill from Appropriations and protect children with epilepsy.
THANK YOU ALL SO MUCH!!!
Amy
Wednesday, May 26, 2010
Support Senate Bill 1051
Hello everyone,
Today I have something very important to tell you about.
Senate Bill 1051.
This bill would allow for VOLUNTARY training for non-medical school staff to administer Diastat, a life saving drug, for seizure emergencies.
What is Diastat? Diastat is a safe and easy to use medication, FDA approved for use by non-medical caregivers such as parents, teachers, babysitters and the like.
Why is this bill important? Well, if a child with Epilepsy is in school and begins having non-stop seizures (also known as Status Epilepticus or just Status) Diastat can be administered via rectal syringe to stop the seizures.
However, under the current rules, only a medical professional is allowed to administer this. Now Soren is lucky in that his school has a full time nurse.
But as we know, many school do not have school nurses on site full time. So in the event of a seizure, they have to call 911. For our kids, by the time the ambulance has shown up, the seizures will have gone on WAY too long and done WAY too much damage. Thus, children with severe seizure disorders, like Soren's friend Camille, cannot go to public school because of this "only nurses" rule.
With the passing of this bill, non-medical staff can volunteer to be trained to give this medicine in school.
Now the nurses union wants folks to believe that only nurses have the skills to administer this. But this is totally bogus! I--who have no medical background--have been "trained." Meaning I read the directions, gloved up, got some lube, and put the syringe up Soren's rectum!
And there is no way to give the incorrect amount because the syringe is set to the appropriate dosage for the child. Frankly, it couldn't be easier!
But to pass this bill, I need your help!
The bill is up for a vote in Appropriations tomorrow (5/27), following difficult, but successful votes in Education & Health. Hundreds of letters from supporters helped lend courage to our elected officials in the face of formidable union opposition.
But now YOU can help by taking less than two minutes to call the Senate President (Darrell Steinberg) and the Appropriations committee chair (Senator Kehoe) to log your support. They will ask for your name, your city and your position on the bill.
I just did it and it was super easy. I called to say I wanted to state my support of Senate Bill 1051. They asked for my name, my city, and my position on the bill.
If YOU are in support, PLEASE call TODAY:
- Senator Darrell Steinberg (916-651-4006)
- Senator Christine Kehoe 916-651-4039
This bill does not impose a fiscal burden on the state and without the passage of SB 1051, thousands of children will be placed at risk of brain damage and death.
There is overwhelming support from the medical community (CA Medical Assoc, Assoc of CA Neurologists, UCLA, USC, Stanford, etc), as well as parents and teachers and nurses who work directly with children in the schools.
If we are successful tomorrow, the bill will go to the Senate Floor for a full vote and then hopefully to the State Assembly.
If you want to learn more, Steve Lopez wrote an article (in LA Times today) which discusses the issue and mentions Soren's two good friends Clayton and Camille.
LA Times Article
Please help children like Soren get this life-saving medicine available in the schools!
Thanks!
Amy
Today I have something very important to tell you about.
Senate Bill 1051.
This bill would allow for VOLUNTARY training for non-medical school staff to administer Diastat, a life saving drug, for seizure emergencies.
What is Diastat? Diastat is a safe and easy to use medication, FDA approved for use by non-medical caregivers such as parents, teachers, babysitters and the like.
Why is this bill important? Well, if a child with Epilepsy is in school and begins having non-stop seizures (also known as Status Epilepticus or just Status) Diastat can be administered via rectal syringe to stop the seizures.
However, under the current rules, only a medical professional is allowed to administer this. Now Soren is lucky in that his school has a full time nurse.
But as we know, many school do not have school nurses on site full time. So in the event of a seizure, they have to call 911. For our kids, by the time the ambulance has shown up, the seizures will have gone on WAY too long and done WAY too much damage. Thus, children with severe seizure disorders, like Soren's friend Camille, cannot go to public school because of this "only nurses" rule.
With the passing of this bill, non-medical staff can volunteer to be trained to give this medicine in school.
Now the nurses union wants folks to believe that only nurses have the skills to administer this. But this is totally bogus! I--who have no medical background--have been "trained." Meaning I read the directions, gloved up, got some lube, and put the syringe up Soren's rectum!
And there is no way to give the incorrect amount because the syringe is set to the appropriate dosage for the child. Frankly, it couldn't be easier!
But to pass this bill, I need your help!
The bill is up for a vote in Appropriations tomorrow (5/27), following difficult, but successful votes in Education & Health. Hundreds of letters from supporters helped lend courage to our elected officials in the face of formidable union opposition.
But now YOU can help by taking less than two minutes to call the Senate President (Darrell Steinberg) and the Appropriations committee chair (Senator Kehoe) to log your support. They will ask for your name, your city and your position on the bill.
I just did it and it was super easy. I called to say I wanted to state my support of Senate Bill 1051. They asked for my name, my city, and my position on the bill.
If YOU are in support, PLEASE call TODAY:
- Senator Darrell Steinberg (916-651-4006)
- Senator Christine Kehoe 916-651-4039
This bill does not impose a fiscal burden on the state and without the passage of SB 1051, thousands of children will be placed at risk of brain damage and death.
There is overwhelming support from the medical community (CA Medical Assoc, Assoc of CA Neurologists, UCLA, USC, Stanford, etc), as well as parents and teachers and nurses who work directly with children in the schools.
If we are successful tomorrow, the bill will go to the Senate Floor for a full vote and then hopefully to the State Assembly.
If you want to learn more, Steve Lopez wrote an article (in LA Times today) which discusses the issue and mentions Soren's two good friends Clayton and Camille.
Please help children like Soren get this life-saving medicine available in the schools!
Thanks!
Amy
Thursday, April 22, 2010
Still Struggling
Despite our best efforts, Soren has been having a rough time this past month with his seizures. We thought we were seeing some progress. We brought back Lamictal and started hearing him laugh again.
But they laughs are gone again. At least for us. I hear that he laughs at school. Hmmmm.
And his seizures, though brief Tonics, are WHOMPERS! I wouldn't be laughing if these things hit me either! They actually elicit a vocal "HUH!" out of him they hit so hard. It's like he got socked in the gut. Which I actually think it might feel like because his stomach muscles contract and his arms and legs stick straight out.
He also seems to know they are coming sometimes. Sometimes he's fussy. Sometimes he "talks" more. There's clearly more awareness. I just wish I knew what he was experiencing.
There are dogs that can sense seizures coming on in people. I wish I had that sense! Or that Aaron and Mo weren't allergic to dogs. Or that I didn't have enough on my hands without adding a dog to the mix. Or that they gave those dogs to people as disabled as Soren. Unfortunately, none of those wishes are going to come true. So we just have to be there for Soren when the seizures hit.
Clearly we need to work on the meds some more. Hopefully we can decrease these seizures. Hopefully we can get that laugh back.
Amy
But they laughs are gone again. At least for us. I hear that he laughs at school. Hmmmm.
And his seizures, though brief Tonics, are WHOMPERS! I wouldn't be laughing if these things hit me either! They actually elicit a vocal "HUH!" out of him they hit so hard. It's like he got socked in the gut. Which I actually think it might feel like because his stomach muscles contract and his arms and legs stick straight out.
He also seems to know they are coming sometimes. Sometimes he's fussy. Sometimes he "talks" more. There's clearly more awareness. I just wish I knew what he was experiencing.
There are dogs that can sense seizures coming on in people. I wish I had that sense! Or that Aaron and Mo weren't allergic to dogs. Or that I didn't have enough on my hands without adding a dog to the mix. Or that they gave those dogs to people as disabled as Soren. Unfortunately, none of those wishes are going to come true. So we just have to be there for Soren when the seizures hit.
Clearly we need to work on the meds some more. Hopefully we can decrease these seizures. Hopefully we can get that laugh back.
Amy
Saturday, February 27, 2010
New Neurologist, New Results
Soren has been with the same neurologist since he was 9 months old and started having Infantile Spasms. His doctor is one of the top in this field, dealing with many chi;dren who have hard to control seizures. During our time with this doctor, Soren has had many changes in his seizure type and we have juggled medicines trying to get control.
But this wonderful doctor is retiring so Soren got passed to a younger neurologist. I didn't feel she had the experience to deal with Soren's seizures. As much as she tried, she didn't seem to be able to think outside the box. And Soren is WAY outside the regular seizure box.
So we made a change. At Soren's pediatrician's recommendation, we went to a new neurologist. And I have a really good feeling about her. She sat down with me and Soren and went over my 22 page history of him point by point. She marked-up this history, noting med changes. I could see her brain trying to figure out the puzzle that is Soren. She told me drug side-effects that I didn't know about that have been contributing to his recent struggles.
She then laid out a plan for his meds. Decreasing things here, adding things there. And then she wanted to see us back in one month--also noting that I could call her nurse any time if we had troubles.
The great thing is that these changes are having a wonderful effect on Soren. While he's still have a seizure now and then, I haven't seen them everyday like before. He's also much happier. We hadn't seen smiles or heard laughs from Soren for a year. This past month we've gotten both and it's like getting our sunshine back. He's much more alert, eating better, talking more. It's amazing.
It's good to know that even when you have a kid with seizures as tough to control as Soren's, hope is still out there!
Amy
But this wonderful doctor is retiring so Soren got passed to a younger neurologist. I didn't feel she had the experience to deal with Soren's seizures. As much as she tried, she didn't seem to be able to think outside the box. And Soren is WAY outside the regular seizure box.
So we made a change. At Soren's pediatrician's recommendation, we went to a new neurologist. And I have a really good feeling about her. She sat down with me and Soren and went over my 22 page history of him point by point. She marked-up this history, noting med changes. I could see her brain trying to figure out the puzzle that is Soren. She told me drug side-effects that I didn't know about that have been contributing to his recent struggles.
She then laid out a plan for his meds. Decreasing things here, adding things there. And then she wanted to see us back in one month--also noting that I could call her nurse any time if we had troubles.
The great thing is that these changes are having a wonderful effect on Soren. While he's still have a seizure now and then, I haven't seen them everyday like before. He's also much happier. We hadn't seen smiles or heard laughs from Soren for a year. This past month we've gotten both and it's like getting our sunshine back. He's much more alert, eating better, talking more. It's amazing.
It's good to know that even when you have a kid with seizures as tough to control as Soren's, hope is still out there!
Amy
Sunday, February 07, 2010
One More Word on One of My Least Favorite Words
The word "Retarded" and "Retard" continue to be in the news thanks to that charm-boy, right-wing icon Rush Limbaugh.
And what's sad is that Sarah Palin--a supposed "comrade-in-arms" for children with special needs, the woman who asked for the FIRING of Rahm Emanuel for the use of this same word, says that Limbaugh's use of the word "retard" while "demeaning and crude" was also "SATIRE."
First of all, here's what Limbaugh said...
"Our political correct society is acting like some giant insult’s taken place by calling a bunch of people who are retards, retards. I mean these people, these liberal activists are kooks. They are loony tunes. (Amy note: I guess if you redefine "retarded" as "crazy" it's not a slam against people with learning disabilities. Just people with mental illness. THAT's okay, right?) Limbaugh continues, "And I’m not going to apologize for it, I’m just quoting Emanuel. It’s in the news. I think their big news is he’s out there calling Obama’s number one supporters f’ing retards."
"So now there’s going to be a meeting. There’s going to be a retard summit at the White House. Much like the beer summit between Obama and Gates and that cop in Cambridge."
When asked about this quote, Palin defended Limbaugh saying he was using "Satire" because he was quoting Emanuel's use of the word.
But I think this is a load of crap. Yes, Limbaugh was using the word because Emanuel used it. But Limbaugh's comments were not satirical. They weren't even the asinine, off-the-cuff comments of Emanuel.
Limbaugh's use of the word "Retard" was exactly what Palin is SUPPOSEDLY against.
Limbaugh used it NOT as a poorly chosen adjective to replace "stupid" as Emanuel did. Limbaugh used it to be MEAN. He used it, in my personal interpretation, specifically and purposely calling these liberals retards. His goal was to insult these people by comparing them to people with with developmental disabilities. It was supposedly meant as a, "Ha, ha! Those guys really ARE retarded." Well, you know what, they're not! And just because you supposedly mean it as a joke doesn't make it any more acceptable.
He then called Emanuel's meeting with a group of advocates for the disabled a "retard summit." Okay, what is satirical about that? That was PURPOSEFULLY cruel against advocates of people with special needs. He used it EXACTLY the way Palin ACCUSED Emanuel of using it (which he didn't). He used it like the "N-word."
It was NOT satirical. It was purposeful. Purposefully mean. He tried to couch it, changing the definition to be "kooky" and "loony tunes." But that is NOT what was intended in the use of that word. And Sarah Palin KNOWS it.
Unfortunately, I think that her speaking out against Emanuel originally about this word was really just a convenient political move. Now that she has to speak against a hugely popular conservative, she can't be as FIRED up about the use of that previously heinous word.
And now, more reports of conservatives using this word are coming out. David Carney, a campaign adviser to Rick Perry, was recently quoted using the word. And Sarah was quoted with a similar soft-pedaling admonishment once again merely calling the use of the word "crude and demeaning." Guess she can't stand behind her convictions for her child quite as strongly when it interferes with her political agenda and her own party uses the word. Sad.
But the point is, LOTS of people use this word. Liberals hot-heads like Rahm, conservative hot-heads like Rush, women in the hair salon, children on the playground, and even at one time, me.
But we shouldn't.
And maybe I, as a parent with NO political agenda, can ask that whenever you have the instinct to say that word, stop and think of Soren.
When you want to say, "that's so retarded" or "what a retard" realize that to ME, you are saying that my son, who has been BRANDED by this word, is stupid. That he is dumb. That he is worthless. And, thus, worth less.
Think of this boy. This boy who, sadly, doesn't have the words to defend himself. But he has me. I will speak for him. I will always speak for him. Even when-and especially when--those who SHOULD won't!
Amy
And what's sad is that Sarah Palin--a supposed "comrade-in-arms" for children with special needs, the woman who asked for the FIRING of Rahm Emanuel for the use of this same word, says that Limbaugh's use of the word "retard" while "demeaning and crude" was also "SATIRE."
First of all, here's what Limbaugh said...
"Our political correct society is acting like some giant insult’s taken place by calling a bunch of people who are retards, retards. I mean these people, these liberal activists are kooks. They are loony tunes. (Amy note: I guess if you redefine "retarded" as "crazy" it's not a slam against people with learning disabilities. Just people with mental illness. THAT's okay, right?) Limbaugh continues, "And I’m not going to apologize for it, I’m just quoting Emanuel. It’s in the news. I think their big news is he’s out there calling Obama’s number one supporters f’ing retards."
"So now there’s going to be a meeting. There’s going to be a retard summit at the White House. Much like the beer summit between Obama and Gates and that cop in Cambridge."
When asked about this quote, Palin defended Limbaugh saying he was using "Satire" because he was quoting Emanuel's use of the word.
But I think this is a load of crap. Yes, Limbaugh was using the word because Emanuel used it. But Limbaugh's comments were not satirical. They weren't even the asinine, off-the-cuff comments of Emanuel.
Limbaugh's use of the word "Retard" was exactly what Palin is SUPPOSEDLY against.
Limbaugh used it NOT as a poorly chosen adjective to replace "stupid" as Emanuel did. Limbaugh used it to be MEAN. He used it, in my personal interpretation, specifically and purposely calling these liberals retards. His goal was to insult these people by comparing them to people with with developmental disabilities. It was supposedly meant as a, "Ha, ha! Those guys really ARE retarded." Well, you know what, they're not! And just because you supposedly mean it as a joke doesn't make it any more acceptable.
He then called Emanuel's meeting with a group of advocates for the disabled a "retard summit." Okay, what is satirical about that? That was PURPOSEFULLY cruel against advocates of people with special needs. He used it EXACTLY the way Palin ACCUSED Emanuel of using it (which he didn't). He used it like the "N-word."
It was NOT satirical. It was purposeful. Purposefully mean. He tried to couch it, changing the definition to be "kooky" and "loony tunes." But that is NOT what was intended in the use of that word. And Sarah Palin KNOWS it.
Unfortunately, I think that her speaking out against Emanuel originally about this word was really just a convenient political move. Now that she has to speak against a hugely popular conservative, she can't be as FIRED up about the use of that previously heinous word.
And now, more reports of conservatives using this word are coming out. David Carney, a campaign adviser to Rick Perry, was recently quoted using the word. And Sarah was quoted with a similar soft-pedaling admonishment once again merely calling the use of the word "crude and demeaning." Guess she can't stand behind her convictions for her child quite as strongly when it interferes with her political agenda and her own party uses the word. Sad.
But the point is, LOTS of people use this word. Liberals hot-heads like Rahm, conservative hot-heads like Rush, women in the hair salon, children on the playground, and even at one time, me.
But we shouldn't.
And maybe I, as a parent with NO political agenda, can ask that whenever you have the instinct to say that word, stop and think of Soren.
When you want to say, "that's so retarded" or "what a retard" realize that to ME, you are saying that my son, who has been BRANDED by this word, is stupid. That he is dumb. That he is worthless. And, thus, worth less.
Think of this boy. This boy who, sadly, doesn't have the words to defend himself. But he has me. I will speak for him. I will always speak for him. Even when-and especially when--those who SHOULD won't!
Amy
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