Cole:"NIK! Nik?"
Niki:"I'm Mommy"
Cole: "NIK?!"
Niki: "My name is Mommy." (pointing to myself)
Cole: "Mommy?"
Niki: "Yes?"
Cole: "Where's Brian?"
Not sure how many times I have had a conversation similar to this one with Cole, but each time I end up exasperated and laughing.
Monday, September 20, 2010
Saturday, September 18, 2010
Laboratory
Cole is a human experiment. I have met other parents that feel the same.
The constant trying to remove or add variables to see what is making the change sometimes makes me feel like I am working with an over-sized lab rat. A cute one.
This week has been a total science project. Cole has been having more seizures than usual. Perhaps even having another kind (wasn't the 5 types that we can actually classify enough)? He has been having this full body jerking for less than a minute, every day. He does not pass out, have the normal post ictal phase, and will stay standing. The majority of the time he snaps right out of it, like an absence.
It is blowing my mind.
There is no rhyme or reason, although they are more prevalent in the morning.
So starts the elimination process. Did he go outside? What are his ketones? Is he hot? Is he cold? Is it a supplement? Is it the weather? Growth spurt? Tired? Not eating enough? Dehydrated? Is it the phase of the moon?!
Also, hello behavioral problems-we're back! I feel like it's been full blown Keppra rage around here. Hitting, biting, screaming, throwing. Yet he is perfectly pleasant whenever someone else outside of the family shows up. My little actor should get an Oscar. He kicked me full-force, square in the throat when I was changing him the other day. Ouch.
We eliminated all of his supplements, (except for Carnitor, which is really a med) and only gave him Keppra. The jerking continues. SO-it's not the Fish oil, Magnesium, Vitamin D, or the Calcium. I can't even get the multi-vitamin, Selenium, Phosphate, Potassium, and Lite salt in him. We did not go outside for two days and it still happened. Not the temp or the sun. Had labs drawn to see if he was deficient on something or dehydrated as he has not been totally compliant lately (read: ever). They all came back totally normal. What the heck is it?
I'm not sure, but it could be that he is just progressing and developing more types of seizures. Joy.
Brian wrote Dr. Kossoff to see if perhaps the change in ratio in the diet that we made two weeks ago could be the trigger. This month alone has been different and Cole has closed his 7 to 10 day window with more of a 5 to 6 day average for major seizures. He had 3 in 2 weeks. One where he turned a nice shade of blue, that pushed us over the edge, finally springing for O2 at home.
Dr Kossoff replied in his lightning quick fashion and mentioned that perhaps the Keppra is being metabolized differently because Cole is on such a high dose. Perhaps the diet is finally working enough that we can back it off a little? It has been that customary 3-4 months of not changing meds. I think that this theory could pull some weight and be the reason for the behavioral issues. However, I don't think that it is causing more seizures. We see our neuro on Tues. I know that he is going to suggest going on an additional med. He did last time. I just am holding on to what parents at the conference told us. "Keep him as long as you can. Don't drug him up until you have to". My baby is social, he is even polite. Answers the door with a big smile on his face and ushers strangers in with a, "Come in! Please come in! How are you? I'm doing good, good". He tells me, "No thanks!" when I try and get him to drink. He is carrying on conversations. He couldn't even talk in January! I am more than a little reluctant to let that go. It's almost like I can justify seizures, as long as he is with it.
His new favorite saying this week is, "Lets take a look". Do you think he sees doctors on a frequent basis? We were at Primary twice this week and both times he proclaimed, "We're home!" when we pulled up. If I ask him to get his shoes, automatically, "Going to see doctor?" follows. He went behind one of my clients today and reached into her pocket, took out her iPhone, and proceeded to take pictures...all without her knowing;) She was very surprised when he held up the screen and proclaimed, "It's Cole!" I don't want this to go away! Even though I understand that it might.
Until we figure it out, Brian and I are scientists. Perhaps even Mad Scientists?! Cole is our experiment and our environment is our laboratory. Maybe I should get a lab coat?
The constant trying to remove or add variables to see what is making the change sometimes makes me feel like I am working with an over-sized lab rat. A cute one.
This week has been a total science project. Cole has been having more seizures than usual. Perhaps even having another kind (wasn't the 5 types that we can actually classify enough)? He has been having this full body jerking for less than a minute, every day. He does not pass out, have the normal post ictal phase, and will stay standing. The majority of the time he snaps right out of it, like an absence.
It is blowing my mind.
There is no rhyme or reason, although they are more prevalent in the morning.
So starts the elimination process. Did he go outside? What are his ketones? Is he hot? Is he cold? Is it a supplement? Is it the weather? Growth spurt? Tired? Not eating enough? Dehydrated? Is it the phase of the moon?!
Also, hello behavioral problems-we're back! I feel like it's been full blown Keppra rage around here. Hitting, biting, screaming, throwing. Yet he is perfectly pleasant whenever someone else outside of the family shows up. My little actor should get an Oscar. He kicked me full-force, square in the throat when I was changing him the other day. Ouch.
We eliminated all of his supplements, (except for Carnitor, which is really a med) and only gave him Keppra. The jerking continues. SO-it's not the Fish oil, Magnesium, Vitamin D, or the Calcium. I can't even get the multi-vitamin, Selenium, Phosphate, Potassium, and Lite salt in him. We did not go outside for two days and it still happened. Not the temp or the sun. Had labs drawn to see if he was deficient on something or dehydrated as he has not been totally compliant lately (read: ever). They all came back totally normal. What the heck is it?
I'm not sure, but it could be that he is just progressing and developing more types of seizures. Joy.
Brian wrote Dr. Kossoff to see if perhaps the change in ratio in the diet that we made two weeks ago could be the trigger. This month alone has been different and Cole has closed his 7 to 10 day window with more of a 5 to 6 day average for major seizures. He had 3 in 2 weeks. One where he turned a nice shade of blue, that pushed us over the edge, finally springing for O2 at home.
Dr Kossoff replied in his lightning quick fashion and mentioned that perhaps the Keppra is being metabolized differently because Cole is on such a high dose. Perhaps the diet is finally working enough that we can back it off a little? It has been that customary 3-4 months of not changing meds. I think that this theory could pull some weight and be the reason for the behavioral issues. However, I don't think that it is causing more seizures. We see our neuro on Tues. I know that he is going to suggest going on an additional med. He did last time. I just am holding on to what parents at the conference told us. "Keep him as long as you can. Don't drug him up until you have to". My baby is social, he is even polite. Answers the door with a big smile on his face and ushers strangers in with a, "Come in! Please come in! How are you? I'm doing good, good". He tells me, "No thanks!" when I try and get him to drink. He is carrying on conversations. He couldn't even talk in January! I am more than a little reluctant to let that go. It's almost like I can justify seizures, as long as he is with it.
His new favorite saying this week is, "Lets take a look". Do you think he sees doctors on a frequent basis? We were at Primary twice this week and both times he proclaimed, "We're home!" when we pulled up. If I ask him to get his shoes, automatically, "Going to see doctor?" follows. He went behind one of my clients today and reached into her pocket, took out her iPhone, and proceeded to take pictures...all without her knowing;) She was very surprised when he held up the screen and proclaimed, "It's Cole!" I don't want this to go away! Even though I understand that it might.
Until we figure it out, Brian and I are scientists. Perhaps even Mad Scientists?! Cole is our experiment and our environment is our laboratory. Maybe I should get a lab coat?
Friday, September 17, 2010
Hard Stick
I counted 7 poke marks on Cole this morning.
There's probably a couple that I can't see.
Apparently they had a hard time starting an IV yesterday; what's new?
My little man is a warrior.
There's probably a couple that I can't see.
Apparently they had a hard time starting an IV yesterday; what's new?
My little man is a warrior.
Thursday, September 9, 2010
Hope
We have hope that in Cole's lifetime there will be strides for new information relating to sodium-channel related disorders. Even though Dr Dravet is technically retired, she is still fighting for these kids. We were honored to meet her.
We met some of the new pioneers for Dravet Syndrome at the conference and have faith that they will be the ones who will be coming up with new ideas that will shape our future. It was incredible to have such wisdom at the IDEA League conference and have a look at the past and future of Dravet Syndrome. There is a long ways to go. Perhaps there will not be a cure in Cole's lifetime. Embracing that we are high maintenance, and that it's okay...one of my favorite things from the conference; we can pull together and make a difference. Please take the time every day to Vote For Hope. You can click on this link. The Global Genes Fund would help research for rare diseases, including Dravet Syndrome. You can vote everyday. If we win, it could mean hope for a lot of our friends. Money is hard to come by for something that only affects 1,000 people in the world. Please Vote For Hope.
We met some of the new pioneers for Dravet Syndrome at the conference and have faith that they will be the ones who will be coming up with new ideas that will shape our future. It was incredible to have such wisdom at the IDEA League conference and have a look at the past and future of Dravet Syndrome. There is a long ways to go. Perhaps there will not be a cure in Cole's lifetime. Embracing that we are high maintenance, and that it's okay...one of my favorite things from the conference; we can pull together and make a difference. Please take the time every day to Vote For Hope. You can click on this link. The Global Genes Fund would help research for rare diseases, including Dravet Syndrome. You can vote everyday. If we win, it could mean hope for a lot of our friends. Money is hard to come by for something that only affects 1,000 people in the world. Please Vote For Hope.
Sunday, August 29, 2010
Strength
The last few days have been heavy. I feel like I have been cramming for final exams, even though there was not a test. Trying to fit every piece of information into your already overloaded brain. Words like missense, truncation, channelopathy and dysautonomia coming through in your dreams.
We learned a lot at the IDEA League conference. Even though we listened to lectures and I had a sense of de-ja-vu about being back at medical conferences, like I was working again, we came out with more than information. We came out with friends. Some of these people will be our life long friends and even though we don't live in the same state, town, or even country; we will share in the joys and triumphs and also the trials and sorrows it comes from raising a child with Dravet Syndrome. Here is a picture of the group who are lucky, we all got diagnoses fairly early. Kids in this group range from 10 months to three years old.
It was liberating to have multiple people who understood our version of "normal". To swap horror stories and laughter felt great. We have not been social for a while, for obvious reasons, and we are both social people. It was kind of an out-of-body experience to witness multiple seizures and everyone knew what they were doing. One child at the conference accidently pulled the fire alarm and we all started to worry about the same things. The noise, the flashing lights, we will have to go outside-get the glasses and hat, bring the cooling vest. It was almost comical. At least we can laugh at ourselves.
I think the main thing that I will bring home from the conference is strength. Strength to keep fighting. Strength from good people supporting each other when you feel like you are so alone. Strength to know that I have resources now. I am exhausted, kind of similar to after finals week, glad that it's over...but realizing that the knowledge you gained will probably help you someday.
Cole had a blast with his grandparents. He had an incredible week, with no major seizures! When we walked in the door this afternoon, saw his smiling face and heard his laugh, we felt strengthened to fight for him-because he deserves it...just like every kid out there with Dravet and other rare disorders.
In the words of my lovely friend Vanessa from Australia..."You are my friend. I love you. You can come to my house anytime...and I will make you a milkshake". Each of you is welcome into our world, virtual or physical-and I can make a mean milkshake. Strawberry is Vanessa's favorite. Find the strength to fight for her.
We learned a lot at the IDEA League conference. Even though we listened to lectures and I had a sense of de-ja-vu about being back at medical conferences, like I was working again, we came out with more than information. We came out with friends. Some of these people will be our life long friends and even though we don't live in the same state, town, or even country; we will share in the joys and triumphs and also the trials and sorrows it comes from raising a child with Dravet Syndrome. Here is a picture of the group who are lucky, we all got diagnoses fairly early. Kids in this group range from 10 months to three years old.
It was liberating to have multiple people who understood our version of "normal". To swap horror stories and laughter felt great. We have not been social for a while, for obvious reasons, and we are both social people. It was kind of an out-of-body experience to witness multiple seizures and everyone knew what they were doing. One child at the conference accidently pulled the fire alarm and we all started to worry about the same things. The noise, the flashing lights, we will have to go outside-get the glasses and hat, bring the cooling vest. It was almost comical. At least we can laugh at ourselves. I think the main thing that I will bring home from the conference is strength. Strength to keep fighting. Strength from good people supporting each other when you feel like you are so alone. Strength to know that I have resources now. I am exhausted, kind of similar to after finals week, glad that it's over...but realizing that the knowledge you gained will probably help you someday.
Cole had a blast with his grandparents. He had an incredible week, with no major seizures! When we walked in the door this afternoon, saw his smiling face and heard his laugh, we felt strengthened to fight for him-because he deserves it...just like every kid out there with Dravet and other rare disorders.In the words of my lovely friend Vanessa from Australia..."You are my friend. I love you. You can come to my house anytime...and I will make you a milkshake". Each of you is welcome into our world, virtual or physical-and I can make a mean milkshake. Strawberry is Vanessa's favorite. Find the strength to fight for her.
Tuesday, August 24, 2010
On The Road-AGAIN!
Brian had to go down south for work this weekend, so we took a leap of faith and made a road trip out of it. We have not taken Cole anywhere overnight, or outside of the valley for that matter, for over 6 months. We packed up the scales, meds and everything else we would need for a couple of days. Cole ended up with one and a half suitcases, a cooler and a stroller. Wow, there is a lot of stuff that you have to have to take care of him.
We travelled at night on the way down and I found that it was easier, as Cole could not see cars whizzing by us and did not have to look at the fast-passing landscape. However, I was not very smart and told him who we were going to see. Every five seconds you would hear, "Mama?" If I didn't answer, he would get upset.
"Yes, Cole?"
"Going to see Grandpa!"
There were variations that included Grandma and toys, but needless to say, the boy was excited.
He slept for only a little over an hour because of the anticipation. At midnight, he was still wide awake, wanting to know when we got to see Grandpa. If he knew, "Are we there yet?" I am sure that would have been included in his repertoire.
He did great. Much better than I expected. His absence seizures definitely increased, but no drops, partials or tonics. He still had some of his regular night time problems with atonics and myoclonics. It was liberating to not have to worry about him falling on slate floors. He had not been in that house since February when his drops were at their peak and the helmet was still an essential part of daily life.
It was super hot outside, so we did not have any kind of activity. We were going to be brave and try the pool. He has not been swimming since January, but it was too much of a risk. So, even though we did not do anything but stay in the house, we were successful. It was a semi-familiar environment, with good air conditioning. He had a blast!
The drive home was much harder, as it was the middle of the day and he could see out of the window. He got restless fast and kept on wanting to get out of his car seat. All in all though, it was a good experience. It gives me courage to try it again soon.
It was also great practice to be with Grandma and Grandpa and teach them some of his routines. They get to hang out with him while Brian and I go to the IDEA conference this week. It won't be a break from reality, or even a vacation, but we are excited to learn! The last time both of us were gone for this long, Cole was 6 months old. However, if anyone can deal with seizures, or even the hospital, it is my parents. They are professionals :)
We travelled at night on the way down and I found that it was easier, as Cole could not see cars whizzing by us and did not have to look at the fast-passing landscape. However, I was not very smart and told him who we were going to see. Every five seconds you would hear, "Mama?" If I didn't answer, he would get upset.
"Yes, Cole?"
"Going to see Grandpa!"
There were variations that included Grandma and toys, but needless to say, the boy was excited.
He slept for only a little over an hour because of the anticipation. At midnight, he was still wide awake, wanting to know when we got to see Grandpa. If he knew, "Are we there yet?" I am sure that would have been included in his repertoire.
He did great. Much better than I expected. His absence seizures definitely increased, but no drops, partials or tonics. He still had some of his regular night time problems with atonics and myoclonics. It was liberating to not have to worry about him falling on slate floors. He had not been in that house since February when his drops were at their peak and the helmet was still an essential part of daily life.
It was super hot outside, so we did not have any kind of activity. We were going to be brave and try the pool. He has not been swimming since January, but it was too much of a risk. So, even though we did not do anything but stay in the house, we were successful. It was a semi-familiar environment, with good air conditioning. He had a blast!
The drive home was much harder, as it was the middle of the day and he could see out of the window. He got restless fast and kept on wanting to get out of his car seat. All in all though, it was a good experience. It gives me courage to try it again soon.
It was also great practice to be with Grandma and Grandpa and teach them some of his routines. They get to hang out with him while Brian and I go to the IDEA conference this week. It won't be a break from reality, or even a vacation, but we are excited to learn! The last time both of us were gone for this long, Cole was 6 months old. However, if anyone can deal with seizures, or even the hospital, it is my parents. They are professionals :)
Tuesday, August 17, 2010
Ideas
The last week had some HIGH highs and some LOW lows.
One really bright spot was our connection to the IDEA league. Already we have met incredible people. We also signed up for a conference, where we will get to meet Dr Dravet herself! The timing is impeccable, we signed up three days before registration closed. After working with non-profits for years, I am impressed at how organized, professional, and recognized IDEA is after only being around for 5 years. The right people are on the Board of Directors and we have already met some of them.
Something that has really hit us is how lucky we are to have this diagnosis relatively early. All of that research, and pushing doctors buttons was worth it. We are "those parents". Some people do not get diagnosed until they are much older and have already been put on sodium channel drugs. We are blessed to have been guided to "just say no" when those particular medications came up in conversations. We realize that this is a spectrum disorder and each kid is different. It is hard to know exactly what Cole's future will look like. We are so grateful for the internet and organizations like IDEA, which bring people like us together for information, validation and support.
Dravet comes from a genetic problem, like Down Syndrome, which our sweet friend Emma has. At this time, there is no surgery, medication or voodoo for gene repair. Only meds and therapies to treat symptoms. So, at this time, we know this will not go away. However, with your support and helping foundations like Bertrand's we can help to fund genetic research that can give these kids a better chance at life, and hope to their parents. Some people have asked, "What can we do?"; honestly, give a donation-even if it is a dollar. Every dollar helps kids just like Cole. Bertrand's parents are some of our greatest friends and this fund is a wonderful way to help.
Brian and I know that we have things to offer other parents going through something like this, and have found great satisfaction in our little Family Support Group. However, now is the time that we need support...and boy have we gotten it. Within 36 hours of the Dravet diagnosis, we were contacted by multiple families. Some who had already been reading this blog. We know that these people will become just as important and special to us, as the others in our Family Support Group.
Go to the IDEA website and learn more about Dravet. Knoweldge is power. The more people that know about it, the more they can educate others-and the world. Just an idea :)
One really bright spot was our connection to the IDEA league. Already we have met incredible people. We also signed up for a conference, where we will get to meet Dr Dravet herself! The timing is impeccable, we signed up three days before registration closed. After working with non-profits for years, I am impressed at how organized, professional, and recognized IDEA is after only being around for 5 years. The right people are on the Board of Directors and we have already met some of them.
Something that has really hit us is how lucky we are to have this diagnosis relatively early. All of that research, and pushing doctors buttons was worth it. We are "those parents". Some people do not get diagnosed until they are much older and have already been put on sodium channel drugs. We are blessed to have been guided to "just say no" when those particular medications came up in conversations. We realize that this is a spectrum disorder and each kid is different. It is hard to know exactly what Cole's future will look like. We are so grateful for the internet and organizations like IDEA, which bring people like us together for information, validation and support.
Dravet comes from a genetic problem, like Down Syndrome, which our sweet friend Emma has. At this time, there is no surgery, medication or voodoo for gene repair. Only meds and therapies to treat symptoms. So, at this time, we know this will not go away. However, with your support and helping foundations like Bertrand's we can help to fund genetic research that can give these kids a better chance at life, and hope to their parents. Some people have asked, "What can we do?"; honestly, give a donation-even if it is a dollar. Every dollar helps kids just like Cole. Bertrand's parents are some of our greatest friends and this fund is a wonderful way to help.
Brian and I know that we have things to offer other parents going through something like this, and have found great satisfaction in our little Family Support Group. However, now is the time that we need support...and boy have we gotten it. Within 36 hours of the Dravet diagnosis, we were contacted by multiple families. Some who had already been reading this blog. We know that these people will become just as important and special to us, as the others in our Family Support Group.
Go to the IDEA website and learn more about Dravet. Knoweldge is power. The more people that know about it, the more they can educate others-and the world. Just an idea :)
Subscribe to:
Posts (Atom)
