Tomorrow is the day! We are nervous/excited. It seems like we have been trying to prepare for this forever. You just never know how it is going to play out until you get there. Tomorrow is also Brian's last day of class-kind of weird. It has been a long 3 years. I am so proud of him! The ending of one chapter and the beginning of another.
We hear that there is a lot of down time in between getting blood draws every four hours around the clock, so if you are in the area, Cole can have visitors! He's armed with his pal Woody and a new Buzz Lightyear. Mr Potato Head has officially joined the crew too! Hopefully, it will keep him entertained along with some DVDs and the toys at the hospital.
We will probably be there for the rest of the week. It all depends on how he reacts to the change.
Monday, May 31, 2010
Friday, May 28, 2010
Miracle Noodles
Cole is a fan.
You can be too, I know I am! They are cleared for the diet. No carbs, no gluten, no calories. You can order here. Have them with tomato sauce, stir-fry, whatever! The perfect diet food. They taste just like regular pasta, and he loves them.
Now if they can only make donuts, pizza and Cafe Rio burritos with no carbs, no fat, no gluten and no calories!!!
You can be too, I know I am! They are cleared for the diet. No carbs, no gluten, no calories. You can order here. Have them with tomato sauce, stir-fry, whatever! The perfect diet food. They taste just like regular pasta, and he loves them.
Now if they can only make donuts, pizza and Cafe Rio burritos with no carbs, no fat, no gluten and no calories!!!
Tuesday, May 25, 2010
Plan B-version 47
I feel that we have gone through the entire alphabet multiple times with all of the "plans" that we have had this year. Here is the most recent (but it could change) version of what we are going to do!
Johns Hopkins has denied taking us on as a patient unless A. our insurance pays for it or B. we move to the Trans-Atlantic Area. Our current insurance has denied our neuro's request to send us to Baltimore. We could appeal, but it will take months and we don't really think they will give in as they have already previously approved Primary. We asked Hopkins if they would take us once we moved-if we started the diet here. They usually have a strict, "you can't start somewhere and then come here and start again" (kind of like, we don't clean up other hospitals messes) policy. However, they said that once we move, as long as we give them at least a month's notice, they will take us on. This was great news. We still feel that Cole needs to be there eventually and recieve services from their Epilepsy Center.
Cole's pediatrician and neurologist have convinced us with their concern that we just can't wait any longer. We have to take action because Cole is having way too many seizures. If he continues to develop new types at the speed he has been these last few months, who knows where he'll be at neuro-wise by the time we can get a job, finish school, move, etc. By the way-he had a 15 min partial yesterday. Day 12. At least that is a day and a half more than he has gone in the last three months, the longest he has gone without a partial is 10 days.
SO-one week from today we will be checking in to Primary to officially start the diet. I am confused, frustrated and more than a little scared. I know that when Brian and I felt that we shouldn't start in April, it was for a reason. Things change on a daily basis for us and so...this is the right thing to do, right now. We'll still go to Hopkins as soon as we can. Until then, I guess we just have to mentally prepare ourselves again for the big change that is coming.
Johns Hopkins has denied taking us on as a patient unless A. our insurance pays for it or B. we move to the Trans-Atlantic Area. Our current insurance has denied our neuro's request to send us to Baltimore. We could appeal, but it will take months and we don't really think they will give in as they have already previously approved Primary. We asked Hopkins if they would take us once we moved-if we started the diet here. They usually have a strict, "you can't start somewhere and then come here and start again" (kind of like, we don't clean up other hospitals messes) policy. However, they said that once we move, as long as we give them at least a month's notice, they will take us on. This was great news. We still feel that Cole needs to be there eventually and recieve services from their Epilepsy Center.
Cole's pediatrician and neurologist have convinced us with their concern that we just can't wait any longer. We have to take action because Cole is having way too many seizures. If he continues to develop new types at the speed he has been these last few months, who knows where he'll be at neuro-wise by the time we can get a job, finish school, move, etc. By the way-he had a 15 min partial yesterday. Day 12. At least that is a day and a half more than he has gone in the last three months, the longest he has gone without a partial is 10 days.
SO-one week from today we will be checking in to Primary to officially start the diet. I am confused, frustrated and more than a little scared. I know that when Brian and I felt that we shouldn't start in April, it was for a reason. Things change on a daily basis for us and so...this is the right thing to do, right now. We'll still go to Hopkins as soon as we can. Until then, I guess we just have to mentally prepare ourselves again for the big change that is coming.
Sunday, May 23, 2010
Cool Dude
The glasses are in, and we think they are working!
Cole has been outside 4 days in a row with NO partial seizures! If he makes it through the entire day today, it will be a record for partials in the last 3 months. We think that the new dose of Keppra is working, even if his drop seizures are still high.
Cole has been outside 4 days in a row with NO partial seizures! If he makes it through the entire day today, it will be a record for partials in the last 3 months. We think that the new dose of Keppra is working, even if his drop seizures are still high.
Thursday, May 13, 2010
Progress
It is inevitable that the night following a major seizure is filled with restlessness.
My dreams are always full of people dying, getting hurt, having seizures and I sometimes jump straight out of my bed screaming.
Last night, although my dreams were strange...no one died. No one seized. I actually even slept a little. That is what I call progress.
You've got to celebrate the little stuff!
My dreams are always full of people dying, getting hurt, having seizures and I sometimes jump straight out of my bed screaming.
Last night, although my dreams were strange...no one died. No one seized. I actually even slept a little. That is what I call progress.
You've got to celebrate the little stuff!
Wednesday, May 12, 2010
Unpredictable
It seems like even a little is too much nowadays.
Cole and I went to a friends house today for less than 2 hours and everything was low key. He fell asleep on the way home and then continued to nap once I got him out of the car. Later, we went and got Sampson's hair cut, even though we did less than a month ago. Maybe took an hour.
Even though we were out, which is rare...it was nothing too terribly exciting-not even a lot of people around. Still too overstimulating for my little boy.
Our timeline of partials every 6 to 10 days just got blown out of the water.
4 days. 18 minutes long, with a VERY long postictal period. This with the increased number of drop seizures, is getting hard on everyone.
It is like your child is a ticking time bomb, without the countdown clock.
We wondered how the rescue meds would affect him if he was partially conscious. Answer: NOT GOOD
In our world where everything is so unpredictable, it is the little stuff that is getting more and more important. Therefore, if you stop by-I am predicting it will be a royal mess.
Cole and I went to a friends house today for less than 2 hours and everything was low key. He fell asleep on the way home and then continued to nap once I got him out of the car. Later, we went and got Sampson's hair cut, even though we did less than a month ago. Maybe took an hour.
Even though we were out, which is rare...it was nothing too terribly exciting-not even a lot of people around. Still too overstimulating for my little boy.
Our timeline of partials every 6 to 10 days just got blown out of the water.
4 days. 18 minutes long, with a VERY long postictal period. This with the increased number of drop seizures, is getting hard on everyone.
It is like your child is a ticking time bomb, without the countdown clock.
We wondered how the rescue meds would affect him if he was partially conscious. Answer: NOT GOOD
In our world where everything is so unpredictable, it is the little stuff that is getting more and more important. Therefore, if you stop by-I am predicting it will be a royal mess.
Monday, May 10, 2010
Sunday, May 9, 2010
Mas o Menos
More or less. I am having a love/hate relationship with Keppra right now.
It is the most medically safe drug for Cole to be on. It does not get metabolized in the liver or kidneys like others. It has very little side effects, compared to others. We love Keppra. I've been on it myself. Cole has mild issues with it. This drug is so much better than others we have tried.
The only time we really have problems with it, is when we are adjusting the dose.
Guess what time it is?
Cole has really been struggling the last few days. He had over 20 drops today. Still less than our average of 30 a couple of months ago, but since increasing the Keppra last time and limiting carbs, cutting out sugar, etc-they have been decreasing. He has been having an average of 8 drops for the last couple of weeks. That is, until things started to change-what's new? We have seen a definite increase in drops and partial-complex this month. We're still not where we were in say, February, but to increase after that significant decrease has been disheartening. Partial-complex seizures have been increasing, even with the diet change and more Keppra.
So, our neuro and pediatrician have suggested increasing the Keppra dose again to see if it affects the partial-complex seizures and possibly the adverse reaction to going outside.
Hello, behavior issues!
Cole is 2. I get that...but the crying for no reason, irritable, screaming, defiant 2 year old Cole is just about the lovliest person on the planet. Can you tell I am being sarcastic?
I don't know if it is a combination of teething, having constant company, the position of the moon, Keppra or what. All I know is that he is not himself. Which in turn, makes Brian and I not ourselves. After my lovely experience with an endoscopy and colonoscopy Friday, I am tired. That prep could be used as a weapon of mass destruction. My heart goes out to our friends that are doing ACTH right now-basically huge amounts of steroids for their 2 year old. Can't say that I envy them at this moment. Cole does not have 'roid rage. At least we can be crazy together!
I hope that Cole feels better soon. He can still run around like crazy and be very entertaining-but we are on edge again, watching his every move. You can go to our family blog to see a hilarious video of him watching the Jazz game last night (what a bummer, by the way). I really am anxious/excited for tomorrow's neurology appointment. A lot is riding on its outcome. Until then I am going to more or less try to relax (I can always hope, right)!
It is the most medically safe drug for Cole to be on. It does not get metabolized in the liver or kidneys like others. It has very little side effects, compared to others. We love Keppra. I've been on it myself. Cole has mild issues with it. This drug is so much better than others we have tried.
The only time we really have problems with it, is when we are adjusting the dose.
Guess what time it is?
Cole has really been struggling the last few days. He had over 20 drops today. Still less than our average of 30 a couple of months ago, but since increasing the Keppra last time and limiting carbs, cutting out sugar, etc-they have been decreasing. He has been having an average of 8 drops for the last couple of weeks. That is, until things started to change-what's new? We have seen a definite increase in drops and partial-complex this month. We're still not where we were in say, February, but to increase after that significant decrease has been disheartening. Partial-complex seizures have been increasing, even with the diet change and more Keppra.
So, our neuro and pediatrician have suggested increasing the Keppra dose again to see if it affects the partial-complex seizures and possibly the adverse reaction to going outside.
Hello, behavior issues!
Cole is 2. I get that...but the crying for no reason, irritable, screaming, defiant 2 year old Cole is just about the lovliest person on the planet. Can you tell I am being sarcastic?
I don't know if it is a combination of teething, having constant company, the position of the moon, Keppra or what. All I know is that he is not himself. Which in turn, makes Brian and I not ourselves. After my lovely experience with an endoscopy and colonoscopy Friday, I am tired. That prep could be used as a weapon of mass destruction. My heart goes out to our friends that are doing ACTH right now-basically huge amounts of steroids for their 2 year old. Can't say that I envy them at this moment. Cole does not have 'roid rage. At least we can be crazy together!
I hope that Cole feels better soon. He can still run around like crazy and be very entertaining-but we are on edge again, watching his every move. You can go to our family blog to see a hilarious video of him watching the Jazz game last night (what a bummer, by the way). I really am anxious/excited for tomorrow's neurology appointment. A lot is riding on its outcome. Until then I am going to more or less try to relax (I can always hope, right)!
Saturday, May 8, 2010
The 411
We just wanted to give everyone a little (okay, not so little) update on Cole. People have been asking and are shocked to hear how much worse Cole has gotten in the last few months. We won’t lie, things have been hard lately. Although we are pleased that his speech has really been improving with his speech therapist coming once a week.
He now has 5 different kinds of seizures that we are aware of. He still has "drop" seizures where he goes unconscious momentarily and "drops" to the ground. His brain stops telling his body "stand up, stand up" as it is too busy seizing. He has to wear his helmet for these and it has been helping him to not get so many bumps and bruises. He will fall with dead weight and not brace for impact, as he is unconscious. That equals a lot of battle wounds if he is near anything hard or sharp. He used to have around 30 of these seizures a day, but since starting the test diet, it has been reduced. He also continues to have "absence" seizures, where he is "absent" for a moment. According to his last EEG (brain wave test) he has well over 100 of these a day. This test has shown a definite increase since the one we did in September. He also has these seizures in his sleep. Sometimes these can come in clusters and lead to a more severe seizure. Cole also continues to have grand-mal seizures, like mine, but his seem to be very long and he does not respond quickly to medications. His last grand mal was 45 minutes long.
A new kind of seizure is something they are calling "partial-complex". It usually only affects one side of his body; with minimal jerking. Sometimes he is coherent, sometimes he is not. These seem to be brought on by different things each time, and they affect different parts of his body. Usually he is paralyzed on one side for at least an hour after one of these seizures. He is having these on average once a week. He has been having these after church or anytime there is a lot of people around. SO-right now, he can't go to church anymore. Even if we only take him to sacrament meeting, he is still over-stimulated. If you want to know more about our beliefs or just want to understand all of these unfamiliar words I am using :), you can go here. Cole can't go to family parties without risk, or even to a restaurant. We can not take him in to big stores for very long, because there are too many people and things to look at, so he gets over-stimulated.
Something else that is new is called "photo sensitive". Cole can no longer go outside. The change in light has been causing seizures. He seems to have an adverse reaction to natural sunlight and temperature changes. Things in our house are very controlled, with the blinds shut and curtains drawn and the right temp. This has been hard on him as the season has finally changed and the sun has finally decided to come out. We have ordered some new special sunglasses with FL41 lenses and hope that they will help.
Basically, Cole has become a prisoner in our own house. He can't go out, or be in groups. He can't go to the park, or even his favorite activity-swimming. He can not watch a lot of television, as that seems to trigger clusters too. He gets very frustrated (as most 2 year-olds would) with just Mom every day all day. Having another child around is like Christmas for Cole. He gets so excited and has light in his eyes. We really hope that he can start to socialize again soon. When family members stopped by the other day with another “little person”, you would have thought Cole won the lottery. Yet, he had multiple falls because he was so excited.
We have some great neighbors and friends. Our ward is even trying to organize a private nursery for Cole, so that Brian and I can go to all three meetings. At this time, we take turns going to our first meeting and we come home and switch so we can teach our lessons. Yet, we can not leave him with anyone because his seizures have been so unpredictable. We have a couple of friends that are nurses, but they work graveyard shifts and are either sleeping or working when it seems that we need a baby-sitter.
At this time, we have a plan to go to Johns Hopkins Medical Center in July. They are the leading hospital for the ketogenic diet and actually, literally, wrote the book on it. Dr Kossoff, who is the head of the team, has been really responsive and has been willing to take on Cole's case, with certain conditions. Our insurance is saying at this time that they are not willing to pay for the diet there, but we are hoping that our neurologist can help to convince them. We have contacted Johns Hopkins and know that it is going to take around $14,000 for the initial week. We then have to follow up every three months. If we do end up moving to Washington D.C., we will be within driving distance of this hospital. But, that won't be until Brian can secure a job and most likely won't be until the end of the year. We have to finish school first :) Thank goodness, Brian is done in June! We feel that Cole might be the reason that we are being prompted to make this move. We have seen results and decreases in certain seizure types with the test diet. Just taking Cole off of sugar and limiting carbs has helped his drop seizures. Other types remain the same. We are glad, because he has been injuring himself so much.
The ketogenic diet is a very strict one. No sugar, little carbs, adequate protein. It works on the principle that if the body does not have glucose to burn for energy, it turns to ketones, shocking the body into a state of fasting and somehow telling the brain to stop having seizures. Everything has to be weighed out to the gram. There is a very small amount of food, and the majority of it is high fat. Cole’s main sources of food will be oil, butter, heavy cream and mayonnaise. He has to eat everything in a 20 minute period or it will not work. Even if he happens to eat crumbs off of the floor, or one small piece of sugar-he can have a seizure. It is a dramatic lifestyle change. If you want to learn more about the diet, we suggest going on-line to the links found on the sidebar of our Epilepsy Warriors blog, or watching the movie, First Do No Harm, with Meryl Streep.
We are also going to try and do a genetic test for something called, Dravet Syndrome, which Cole is a candidate for. It is basically the worst kind of epilepsy there is and he will actually get worse as he gets older. He may lose his abilities to walk and talk even. We are hoping that this is not the case. With as many types of seizures that Cole has, being so young, this is a possibility, but we will not know for sure until we do the test.
We have exhausted all of our personal resources and if Johns Hopkins is his best shot, we are going to take it; or we will forever be asking ourselves, "what if"... The fundraiser at this time is kind of up in the air until we get new information on when we can actually be accepted as patients at Hopkins. The lead Dr. there is telling us that he will not accept us until our insurance will pay part. We might have to move before that happens. We just know that we want to do it right the first time. Prayers are always accepted and we know that we have a lot of people who love us and think about us often.
Thanks to everyone that has called and offered help. We are so grateful to know that we have an army behind us. The diet may not work, but we are willing to change everything to give Cole that chance.
He now has 5 different kinds of seizures that we are aware of. He still has "drop" seizures where he goes unconscious momentarily and "drops" to the ground. His brain stops telling his body "stand up, stand up" as it is too busy seizing. He has to wear his helmet for these and it has been helping him to not get so many bumps and bruises. He will fall with dead weight and not brace for impact, as he is unconscious. That equals a lot of battle wounds if he is near anything hard or sharp. He used to have around 30 of these seizures a day, but since starting the test diet, it has been reduced. He also continues to have "absence" seizures, where he is "absent" for a moment. According to his last EEG (brain wave test) he has well over 100 of these a day. This test has shown a definite increase since the one we did in September. He also has these seizures in his sleep. Sometimes these can come in clusters and lead to a more severe seizure. Cole also continues to have grand-mal seizures, like mine, but his seem to be very long and he does not respond quickly to medications. His last grand mal was 45 minutes long.
A new kind of seizure is something they are calling "partial-complex". It usually only affects one side of his body; with minimal jerking. Sometimes he is coherent, sometimes he is not. These seem to be brought on by different things each time, and they affect different parts of his body. Usually he is paralyzed on one side for at least an hour after one of these seizures. He is having these on average once a week. He has been having these after church or anytime there is a lot of people around. SO-right now, he can't go to church anymore. Even if we only take him to sacrament meeting, he is still over-stimulated. If you want to know more about our beliefs or just want to understand all of these unfamiliar words I am using :), you can go here. Cole can't go to family parties without risk, or even to a restaurant. We can not take him in to big stores for very long, because there are too many people and things to look at, so he gets over-stimulated. Something else that is new is called "photo sensitive". Cole can no longer go outside. The change in light has been causing seizures. He seems to have an adverse reaction to natural sunlight and temperature changes. Things in our house are very controlled, with the blinds shut and curtains drawn and the right temp. This has been hard on him as the season has finally changed and the sun has finally decided to come out. We have ordered some new special sunglasses with FL41 lenses and hope that they will help.
Basically, Cole has become a prisoner in our own house. He can't go out, or be in groups. He can't go to the park, or even his favorite activity-swimming. He can not watch a lot of television, as that seems to trigger clusters too. He gets very frustrated (as most 2 year-olds would) with just Mom every day all day. Having another child around is like Christmas for Cole. He gets so excited and has light in his eyes. We really hope that he can start to socialize again soon. When family members stopped by the other day with another “little person”, you would have thought Cole won the lottery. Yet, he had multiple falls because he was so excited.
We have some great neighbors and friends. Our ward is even trying to organize a private nursery for Cole, so that Brian and I can go to all three meetings. At this time, we take turns going to our first meeting and we come home and switch so we can teach our lessons. Yet, we can not leave him with anyone because his seizures have been so unpredictable. We have a couple of friends that are nurses, but they work graveyard shifts and are either sleeping or working when it seems that we need a baby-sitter.
At this time, we have a plan to go to Johns Hopkins Medical Center in July. They are the leading hospital for the ketogenic diet and actually, literally, wrote the book on it. Dr Kossoff, who is the head of the team, has been really responsive and has been willing to take on Cole's case, with certain conditions. Our insurance is saying at this time that they are not willing to pay for the diet there, but we are hoping that our neurologist can help to convince them. We have contacted Johns Hopkins and know that it is going to take around $14,000 for the initial week. We then have to follow up every three months. If we do end up moving to Washington D.C., we will be within driving distance of this hospital. But, that won't be until Brian can secure a job and most likely won't be until the end of the year. We have to finish school first :) Thank goodness, Brian is done in June! We feel that Cole might be the reason that we are being prompted to make this move. We have seen results and decreases in certain seizure types with the test diet. Just taking Cole off of sugar and limiting carbs has helped his drop seizures. Other types remain the same. We are glad, because he has been injuring himself so much.
The ketogenic diet is a very strict one. No sugar, little carbs, adequate protein. It works on the principle that if the body does not have glucose to burn for energy, it turns to ketones, shocking the body into a state of fasting and somehow telling the brain to stop having seizures. Everything has to be weighed out to the gram. There is a very small amount of food, and the majority of it is high fat. Cole’s main sources of food will be oil, butter, heavy cream and mayonnaise. He has to eat everything in a 20 minute period or it will not work. Even if he happens to eat crumbs off of the floor, or one small piece of sugar-he can have a seizure. It is a dramatic lifestyle change. If you want to learn more about the diet, we suggest going on-line to the links found on the sidebar of our Epilepsy Warriors blog, or watching the movie, First Do No Harm, with Meryl Streep.We are also going to try and do a genetic test for something called, Dravet Syndrome, which Cole is a candidate for. It is basically the worst kind of epilepsy there is and he will actually get worse as he gets older. He may lose his abilities to walk and talk even. We are hoping that this is not the case. With as many types of seizures that Cole has, being so young, this is a possibility, but we will not know for sure until we do the test.
We have exhausted all of our personal resources and if Johns Hopkins is his best shot, we are going to take it; or we will forever be asking ourselves, "what if"... The fundraiser at this time is kind of up in the air until we get new information on when we can actually be accepted as patients at Hopkins. The lead Dr. there is telling us that he will not accept us until our insurance will pay part. We might have to move before that happens. We just know that we want to do it right the first time. Prayers are always accepted and we know that we have a lot of people who love us and think about us often.
Thanks to everyone that has called and offered help. We are so grateful to know that we have an army behind us. The diet may not work, but we are willing to change everything to give Cole that chance.
Sunday, May 2, 2010
Feliz Cumpleanos
Here's to another year of life. One that was filled with plenty of downs, but had some ups in between! Each year is a blessing. My actual birthday was not that spectacular, but there was some celebration before and after the fact that made it special.
Most of you know that Cole has been steadily getting worse. He had three major seizures in six days last week. Two of them were at my impromptu birthday party. We almost called everyone and canceled when he started seizing right before people were supposed to arrive. We then just acknowledged that anyone who was coming over was aware of the situation and could realize that this is our life. It has been a really long time since he has had two major seizures in one day. It was hard. Thankfully, we had our favorite pediatrician on hand and our friend that is a surgical nurse. InstaCare in our living room! Brian and Dr P took Cole into the bathroom so that he could be postictal and throw up and such after he so kindly vomited on the couch, (which I had just had professionally cleaned from the last time he did this! Thankfully, most of it was caught with his blanket). He then proceeded to have another seizure, so we were grateful that we had skilled medical help in the house.
The show must go on, so the rest of the group enjoyed lovely creations by Miss Piece, Love and Cake herself! Strawberry Lemonade and S'Mores cupcakes. They were delicious!
My dear friends took me out to lunch the day after for my favorite-some good, red meat! We had a great time without the majority of our children. Only the small, immobile ones came ;) So I guess it's time to live it up, because in 360 days or so, I will officially be in my 30's...bring it on!
Most of you know that Cole has been steadily getting worse. He had three major seizures in six days last week. Two of them were at my impromptu birthday party. We almost called everyone and canceled when he started seizing right before people were supposed to arrive. We then just acknowledged that anyone who was coming over was aware of the situation and could realize that this is our life. It has been a really long time since he has had two major seizures in one day. It was hard. Thankfully, we had our favorite pediatrician on hand and our friend that is a surgical nurse. InstaCare in our living room! Brian and Dr P took Cole into the bathroom so that he could be postictal and throw up and such after he so kindly vomited on the couch, (which I had just had professionally cleaned from the last time he did this! Thankfully, most of it was caught with his blanket). He then proceeded to have another seizure, so we were grateful that we had skilled medical help in the house.
The show must go on, so the rest of the group enjoyed lovely creations by Miss Piece, Love and Cake herself! Strawberry Lemonade and S'Mores cupcakes. They were delicious!
My dear friends took me out to lunch the day after for my favorite-some good, red meat! We had a great time without the majority of our children. Only the small, immobile ones came ;) So I guess it's time to live it up, because in 360 days or so, I will officially be in my 30's...bring it on!
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