Stay tuned...
Wednesday, December 28, 2011
For the best big sister ever!
Just so nobody thinks I've forgotten about my best girl, Liv, I'm going to let you in on a little secret. I have something special in the works for her beginning on 1.1.12. Hmm, I guess it still is kind of a secret, huh? ;)
Stay tuned...
Stay tuned...
A couple of quick things
Quickie #1 - I have 10 followers! Heellllooo double digits! :o)
Quickie #2 - James had a perfect OT session today. I couldn't have asked any more from that little boy. He was sitting practically on his own. He only required some input into his left hip to keep him from tipping to the right. You know you're watching a miracle in the works when his therapist, Barb, starts to tear up at his surprising new progress. It was only 1 week since she saw him last. These changes are incredible. I even had a friend of the family yell up 2 pews in church "Sarah, whose kid is that? That's not the same kid that was here last week." Yup, yelling in church. That's when you know it's good. lol.
Quickie #3 - I received an email back from the author of the article about the young boy in Montana and then another email from his father. Wonderful! A whole new avenue to explore.
And for good measure, an adorable photo of James sound asleep at a holiday party...
That doggy hat rules. He's going to kill me for this someday. :-)
Quickie #2 - James had a perfect OT session today. I couldn't have asked any more from that little boy. He was sitting practically on his own. He only required some input into his left hip to keep him from tipping to the right. You know you're watching a miracle in the works when his therapist, Barb, starts to tear up at his surprising new progress. It was only 1 week since she saw him last. These changes are incredible. I even had a friend of the family yell up 2 pews in church "Sarah, whose kid is that? That's not the same kid that was here last week." Yup, yelling in church. That's when you know it's good. lol.
Quickie #3 - I received an email back from the author of the article about the young boy in Montana and then another email from his father. Wonderful! A whole new avenue to explore.
And for good measure, an adorable photo of James sound asleep at a holiday party...
That doggy hat rules. He's going to kill me for this someday. :-)
Tuesday, December 27, 2011
A BAMSI Article
After posting the article from Montana I thought "Hey! I have one of those!"
I never want to lose this article. With it on here, it's A LOT less likely I'll misplace it. :)
Monday, December 26, 2011
Another "James"???
My Aunt Bette posted this link on Facebook last night.
Bozeman boy works to overcome undiagnosed syndrome.
I promised Kristie, James' physical therapist, that I'd post it on here. Unfortunately, I don't have the time right now to give this post the attention that it truly deserves. Sooo ... I'll be back to update my thoughts on this soon! To be continued...
...Sigh. I just finished updating this post and, alas, the whole thing erased. No more time right now. I'll attempt it again later ...
A neb, a nosebleed, and a coffee (for me) later.
Third time's the charm ...
Here goes.
People ask a lot of questions about James and that's ok. Most questions are good questions. By "good question" I don't mean complex. A good question is one where the asker really cares about the answer. I've found that some people just ask questions to be nosey and don't really listen to your answer. They're too busy waiting for their next chance to talk. If a person is willing to truly listen to the answer, care for the individual directly involved as well as those indirectly affected, and take no joy in another's misfortune or poor happenstance then you, my friend, can ask me anything you'd like.
It's not always other people asking us questions. Mike and I have asked a lot of questions of ourselves as well.
-How did this happen?
-When did this happen?
-Is it because I threw up my prenatal vitamins when my morning sickness was bad?
-Was it the labor that started at 29 weeks?
-What is "this" anyway?
-There's no diagnosis?
-ARE THERE OTHER KIDS LIKE JAMIE?
It's not all questions in our lives, although there are a lot. We do have many answers too.
-Do we love James? More than anything.
-Would we trade him? Not for anything.
-No diagnosis? We'll find one.
-Other children? We'll find them.
-Did we cause this? Blame fixes nothing. We didn't do anything "wrong".
-Will our marriage survive this? No doubt. Yes.
Thanks to the answers that we do have, we'll make this work.
The answers that we receive from doctors are usually a little bit different. They seem to be ok with seeing James as a bunch of different symptoms and not looking at the big picture, one main syndrome. They don't have that big answer for us but I'm not going to let up until I find it. Here are the syndromes, illnesses, afflictions, etc that I've been told are not causing James' struggles:
-Down's Syndrome? No.
-Autism? No.
-Metabolic deficiency? No.
-Tourette's Syndrome? No.
-Angelman's Syndrome? No.
-Spina Bifida? No.
-Cancer? No.
-Brain tumor? No.
-Anatomical abnormality of the brain? No.
And his current diagnosis is:
-Epilepsy. Yes.
That's it.
However his list of symptoms, which for some reason do not match an actual diagnosis are:
-Seizures
-Hypotonia
-Global Developmental Delay
-Ataxia
-immaturity of the optic nerve
-GI constipation due to neuralgia
-Asthma
How can he require a neurologist, epileptologist, genetisist, dietician, gastroenterologist, opthalmologist, ENT, physiatrist, and a PCP, and there be no correlation? Wouldn't it be more reasonable to believe that there's one main cause for all of this than a myriad of random, sporadic symptoms? A syndrome versus symptoms?
A lot of questions and really, no one to answer them. It's very frustrating. Most people can sympathize but no one to empathize. There is no other "James".
Until now.
When I read this article I was glued to it from the opening line. Usually something jumps out at me and I think "Nope. Not James.". Not this time though. The seizure occurrence is different but, I don't know, I felt something in my gut. I sent an email to the author of the article with my contact information and I also found the little boy's father on Facebook. I sent him a message. What have I got to lose? Nothing. But, boy is there a lot to gain. Someone to talk to. Someone to listen to. Someone to bounce ideas off of. What have they tried? Where have they gone? Which doctors have they seen? What works? What doesn't?
And most importantly, James will know that there is someone else, just like him in the world. There's comfort in knowing that.
The most important things in the world are love, hope, and knowing that you're not in this alone.
Bozeman boy works to overcome undiagnosed syndrome.
I promised Kristie, James' physical therapist, that I'd post it on here. Unfortunately, I don't have the time right now to give this post the attention that it truly deserves. Sooo ... I'll be back to update my thoughts on this soon! To be continued...
...Sigh. I just finished updating this post and, alas, the whole thing erased. No more time right now. I'll attempt it again later ...
A neb, a nosebleed, and a coffee (for me) later.
Third time's the charm ...
Here goes.
People ask a lot of questions about James and that's ok. Most questions are good questions. By "good question" I don't mean complex. A good question is one where the asker really cares about the answer. I've found that some people just ask questions to be nosey and don't really listen to your answer. They're too busy waiting for their next chance to talk. If a person is willing to truly listen to the answer, care for the individual directly involved as well as those indirectly affected, and take no joy in another's misfortune or poor happenstance then you, my friend, can ask me anything you'd like.
It's not always other people asking us questions. Mike and I have asked a lot of questions of ourselves as well.
-How did this happen?
-When did this happen?
-Is it because I threw up my prenatal vitamins when my morning sickness was bad?
-Was it the labor that started at 29 weeks?
-What is "this" anyway?
-There's no diagnosis?
-ARE THERE OTHER KIDS LIKE JAMIE?
It's not all questions in our lives, although there are a lot. We do have many answers too.
-Do we love James? More than anything.
-Would we trade him? Not for anything.
-No diagnosis? We'll find one.
-Other children? We'll find them.
-Did we cause this? Blame fixes nothing. We didn't do anything "wrong".
-Will our marriage survive this? No doubt. Yes.
Thanks to the answers that we do have, we'll make this work.
The answers that we receive from doctors are usually a little bit different. They seem to be ok with seeing James as a bunch of different symptoms and not looking at the big picture, one main syndrome. They don't have that big answer for us but I'm not going to let up until I find it. Here are the syndromes, illnesses, afflictions, etc that I've been told are not causing James' struggles:
-Down's Syndrome? No.
-Autism? No.
-Metabolic deficiency? No.
-Tourette's Syndrome? No.
-Angelman's Syndrome? No.
-Spina Bifida? No.
-Cancer? No.
-Brain tumor? No.
-Anatomical abnormality of the brain? No.
And his current diagnosis is:
-Epilepsy. Yes.
That's it.
However his list of symptoms, which for some reason do not match an actual diagnosis are:
-Seizures
-Hypotonia
-Global Developmental Delay
-Ataxia
-immaturity of the optic nerve
-GI constipation due to neuralgia
-Asthma
How can he require a neurologist, epileptologist, genetisist, dietician, gastroenterologist, opthalmologist, ENT, physiatrist, and a PCP, and there be no correlation? Wouldn't it be more reasonable to believe that there's one main cause for all of this than a myriad of random, sporadic symptoms? A syndrome versus symptoms?
A lot of questions and really, no one to answer them. It's very frustrating. Most people can sympathize but no one to empathize. There is no other "James".
Until now.
When I read this article I was glued to it from the opening line. Usually something jumps out at me and I think "Nope. Not James.". Not this time though. The seizure occurrence is different but, I don't know, I felt something in my gut. I sent an email to the author of the article with my contact information and I also found the little boy's father on Facebook. I sent him a message. What have I got to lose? Nothing. But, boy is there a lot to gain. Someone to talk to. Someone to listen to. Someone to bounce ideas off of. What have they tried? Where have they gone? Which doctors have they seen? What works? What doesn't?
And most importantly, James will know that there is someone else, just like him in the world. There's comfort in knowing that.
The most important things in the world are love, hope, and knowing that you're not in this alone.
Friday, December 23, 2011
1 month follow up, followed up
After Jamie's appointment, his seizure free streak ended on Day 9. :( I'm only allowing myself to be sad for a moment. Sure a seizure is heartbreaking when he's gone without, but here is a little equation for you:
9 days X 40 seizures per day = 360, 360 - 1 = 359 less seizures for James
Ya, I'm happy about that!
I am also pleased to announce that James' repeat lab work is perfect! His overall cholesterol levels and triglycerides are actually BETTER than BEFORE he started the diet! Strange considering he went from drinking soy milk and eating mainly fruits and vegetables to drinking and eating, well, fatty cholesterol! Interesting to say the least ... and makes me wonder if becoming a vegetarian due to my own high cholesterol even makes sense now.
Hmm...
New cholesterol level = 164 down from 188 at start of diet - yay!
New triglyceride level = 89 down from 98 at start of diet (Extra YAY!)
NO changes to the diet. We just keep on keepin' on!!
What we're doing is working. :-)
Also, I received a request from James' girlfriend, and physical therapist, Kristie, for more pictures on the blog. So, I'm going to make an effort to keep my audience happy. :)
9 days X 40 seizures per day = 360, 360 - 1 = 359 less seizures for James
Ya, I'm happy about that!
I am also pleased to announce that James' repeat lab work is perfect! His overall cholesterol levels and triglycerides are actually BETTER than BEFORE he started the diet! Strange considering he went from drinking soy milk and eating mainly fruits and vegetables to drinking and eating, well, fatty cholesterol! Interesting to say the least ... and makes me wonder if becoming a vegetarian due to my own high cholesterol even makes sense now.
Hmm...
New cholesterol level = 164 down from 188 at start of diet - yay!
New triglyceride level = 89 down from 98 at start of diet (Extra YAY!)
NO changes to the diet. We just keep on keepin' on!!
What we're doing is working. :-)
Also, I received a request from James' girlfriend, and physical therapist, Kristie, for more pictures on the blog. So, I'm going to make an effort to keep my audience happy. :)
1 Month Follow Up
We went up to Floating for James' 1 month follow up appointment with neurology. We met with both his dietician and his new epileptologist. They were both quite pleased with Jamie's progress. His seizures are far more controlled than just a month ago and his developmental progress is astounding! "Astounding" is my word for it - not the medical experts. I don't think anyone gets quite as excited as the parents. :-) If he remains seizure free for another 6 - 8 weeks we'll start stepping off the Lorazepam. Then, after 6 months we can start stepping off his other seizure medications. This will be a very slow process as to not shock his system. Children with seizures are so sensitive to even the slightest change. James used to have a seizure every time his feet touched the warm bath water. Yup. Something that seems that insignificant to you or me can completely throw a wrench into the delicate world that is his nervous system.
The only bad news was regarding his most recent lab work. Apparently, his cholesterol and triglycerides were through the roof!! I'm not exaggerating. A healthy range for triglycerides is 75-100, James was at 1280! I didn't trade in seizures for an unexpected heart attack! Good lord! So, we left with a new script for repeat lab work - this time fasting. Nobody told me to have James fast last time. Once the new results are in we'll discuss further changes in the diet. We may have to switch from heavy cream back to soy milk - which will change EVERYTHING. but, there's no saturated fat. We'll see. I'm not going to worry until we get the new results.
To be continued...
The only bad news was regarding his most recent lab work. Apparently, his cholesterol and triglycerides were through the roof!! I'm not exaggerating. A healthy range for triglycerides is 75-100, James was at 1280! I didn't trade in seizures for an unexpected heart attack! Good lord! So, we left with a new script for repeat lab work - this time fasting. Nobody told me to have James fast last time. Once the new results are in we'll discuss further changes in the diet. We may have to switch from heavy cream back to soy milk - which will change EVERYTHING. but, there's no saturated fat. We'll see. I'm not going to worry until we get the new results.
To be continued...
Monday, December 19, 2011
A seizure free week
Today James has been seizure free for one full week! Seven glorious days of ... nothing! I am, very cautiously, floating on Cloud 9. WOOO!
Everybody who has seen James recently, whether it's relatives at a holiday party or a therapist from Early Intervention, has commented on the marked improvement in this little guy. He's like a new man! He continues to sleep through the night (Hallelujah!!!) and just today during his nap I saw him in REM!
REM = dreaming.
REM = good, productive sleep.
REM = storing of new information.
REM = LEARNING!!!
I continue to be amazed every single day.
The ketogenic diet is a miracle.
I couldn't ask for a better Christmas gift.
Infinite hope. :-)
Everybody who has seen James recently, whether it's relatives at a holiday party or a therapist from Early Intervention, has commented on the marked improvement in this little guy. He's like a new man! He continues to sleep through the night (Hallelujah!!!) and just today during his nap I saw him in REM!
REM = dreaming.
REM = good, productive sleep.
REM = storing of new information.
REM = LEARNING!!!
I continue to be amazed every single day.
The ketogenic diet is a miracle.
I couldn't ask for a better Christmas gift.
Infinite hope. :-)
Monday, December 12, 2011
A Tangible Face
This is a poem I had written back in March of this year. It's on my Facebook page, my poor forgotten blog from the summer, and, most importantly, it was printed on the backs of our Team Jamie-James shirts we wore during the Epilepsy Walk in Boston. Now I believe it needs to have a place in this blog.
This diet has brought us so much hope and the changes in James are just remarkable. Still though, when one of his seizures wracks his tiny body I can't help but somehow feel deflated. Not defeated, but deflated. I fill up with all the hope and good things that are currently going on and when a seizure strikes it's as though the wind has been knocked out of me.
That evil, silent stalker snuck into our house again, last night around midnight.
Between the medicines, the diet, and our other precautions, he just keeps finding a way in. It's as though we used to leave the doors unlocked and wide open for him to get at James. Then we started closing the doors. Then locking them. On to the windows. Close then lock. Then getting an alarm system. A guard dog (or 2). Slowly, but surely, we've been making it harder for him to get in.
But boy, does it sting when he manages to weasel his way into our home.
This diet has brought us so much hope and the changes in James are just remarkable. Still though, when one of his seizures wracks his tiny body I can't help but somehow feel deflated. Not defeated, but deflated. I fill up with all the hope and good things that are currently going on and when a seizure strikes it's as though the wind has been knocked out of me.
That evil, silent stalker snuck into our house again, last night around midnight.
Between the medicines, the diet, and our other precautions, he just keeps finding a way in. It's as though we used to leave the doors unlocked and wide open for him to get at James. Then we started closing the doors. Then locking them. On to the windows. Close then lock. Then getting an alarm system. A guard dog (or 2). Slowly, but surely, we've been making it harder for him to get in.
But boy, does it sting when he manages to weasel his way into our home.
I wish Epilepsy wasn't a disease,
I wish it had a face,
So I could meet it sometime,
Just name the time and place.
I wish we could stand toe to toe,
I could spit forth my rage and hate,
instead I stand crib side silent,
and am helpless while I wait.
The silent sneaky stalker,
slithers into my house at night,
parents' sleep restless and fleeting,
baby's sleeping should be right.
I have no cure or answer,
worth trying, it's been done,
Epilepsy, oh hated face,
be gone and leave my son.
-Sarah Dodge
The back of our Team Jamie-James shirts.
Our walking team. Full of the most amazing people I know.
Mike, Liv, me, & James
Sunday, December 11, 2011
Video comparison
Well, we are just about a month into this thing! James has gone from 30-50 seizures a day to 1 in 8 days! Unbelievable! I sincerely hope that some desperate parent, who thinks they have tried everything to help their child, stumbles across this blog someday and learns of a new path to start upon. Just to be able to give hope to another "me", to help 1 other person would make this even more meaningful.
Someday, perhaps.
Up until now you've all been following along by my words. Today, I'd like to show you 2 very different videos that will help showcase a few of Jamie's improvements.
Video #1 was taken 3 days after we returned home from starting the diet at Floating.
Video #2 was just taken today, about a month into the diet.
The differences may not jump out at you, but they sure do for me!
The major improvements I see are:
- Increase in head/neck control. You'll see much more of his face and much less of the top of his head from not being able to maintain an upright position.
- He has the ability to open his hands and use them more accurately. You'll notice him manipulating the toy with open hands not closed fists.
- More verbal. I didn't capture as many sounds as I would've liked on video number 2 but that's ok! This is a real blog. I'm not going to paste stuff together to make it seem better than it is. I'm not much of a "sugar-coater". He is laughing - and yelling! - at his toys now. It's hysterical! Maybe the next video will showcase this better. :)
- He is so much more relaxed. You'll notice that there are less extraneous movements. His actions are more deliberate. This has also improved his endurance and toleration of play.
If you can't see all these things - it's ok! I can. I see the improvement. However, sometimes, when you're too close to a situation it becomes hard to see the small daily advances. Every day blurs into the next and next thing you know, you're saying "when did he start doing this?" This is precisely why I am video taping him from time to time.
Video #1...
Very happy!
Someday, perhaps.
Up until now you've all been following along by my words. Today, I'd like to show you 2 very different videos that will help showcase a few of Jamie's improvements.
Video #1 was taken 3 days after we returned home from starting the diet at Floating.
Video #2 was just taken today, about a month into the diet.
The differences may not jump out at you, but they sure do for me!
The major improvements I see are:
- Increase in head/neck control. You'll see much more of his face and much less of the top of his head from not being able to maintain an upright position.
- He has the ability to open his hands and use them more accurately. You'll notice him manipulating the toy with open hands not closed fists.
- More verbal. I didn't capture as many sounds as I would've liked on video number 2 but that's ok! This is a real blog. I'm not going to paste stuff together to make it seem better than it is. I'm not much of a "sugar-coater". He is laughing - and yelling! - at his toys now. It's hysterical! Maybe the next video will showcase this better. :)
- He is so much more relaxed. You'll notice that there are less extraneous movements. His actions are more deliberate. This has also improved his endurance and toleration of play.
If you can't see all these things - it's ok! I can. I see the improvement. However, sometimes, when you're too close to a situation it becomes hard to see the small daily advances. Every day blurs into the next and next thing you know, you're saying "when did he start doing this?" This is precisely why I am video taping him from time to time.
Video #1...
... Video #2
Very happy!
Wednesday, December 7, 2011
Keto diet info
I'm posting some general information regarding the ketogenic diet in case anyone is interested in learning more about it.
A great website to check out: http://www.charliefoundation.org/
A great movie to watch: "...First Do No Harm."
-As a side note, if you are living a life similar to mine you will need a full box of tissues. I watched it alone in the privacy of my own bedroom so nobody could see my sob wracked, tear streaked, runny nosed, puffy, blotchy face. This movie hit so close to home. I was a mess - but it gave me so much hope. :) P.S. Several of the actors are/were once on the diet themselves!!
I am still currently reading this book: Ketogenic Diets and have recently finished this one: Treating Epilepsy Naturally.
An investment in knowledge pays the best interest. - Ben Franklin
A great website to check out: http://www.charliefoundation.org/
A great movie to watch: "...First Do No Harm."
-As a side note, if you are living a life similar to mine you will need a full box of tissues. I watched it alone in the privacy of my own bedroom so nobody could see my sob wracked, tear streaked, runny nosed, puffy, blotchy face. This movie hit so close to home. I was a mess - but it gave me so much hope. :) P.S. Several of the actors are/were once on the diet themselves!!
I am still currently reading this book: Ketogenic Diets and have recently finished this one: Treating Epilepsy Naturally.
An investment in knowledge pays the best interest. - Ben Franklin
Days 23 & 24
I've been knocking on wood - or laminate - a lot lately and it must be working because James is still seizure free!
I figure if this diet does what we want it to, this blog is going to get real boring, real fast. I'm totally ok with that but my lovely blog readers might not be. My life hasn't been boring in years and a little bit of boredom is an ok thing once in awhile. Too much boredom and you tend to get lazy. I can't afford to get lazy, yet. James still has a long, hard road ahead of him and he's going to need his mom.
Today, James had an occupational therapy appointment with Nina and he decided to take a few little steps down that path that is sprawled out ahead of him. He has this beautiful, new relaxed feel about him. He's always had a laid back attitude but now his body seems to be following suit. His mind and body seem to be working harmoniously together and they're starting to do some great things. He's been laughing and babbling so much more. He's turning into quite the chatterbox! Still mostly open mouth vowel sounds bet hey, it's a great start! He has also found himself in the mirror and it appears that he likes who he sees! Why wouldn't he? He is a handsome little fellow! He smiles and laughs at his reflection, which I learned today is the skill level of a one year old! Up until now, James had only the capabilities of a six month old. What a tremendous leap in the life skills department! This mama is proud. The final figurative step on his path is in the gross motor department, somewhere he's been deeply lacking for his full two and a half years. Nina was holding his bumpy textured, blue ball and he reached up with BOTH hands and took it from her! He has never, NEVER done that before. Incredible!
Great progress:
James remains seizure free (knock.knock) and 3 baby steps forward: 1 speech, 1 cognitive, 1 gross motor.
Without continual growth and progress, such words as improvement, achievement, and success have no meaning. -Ben Franklin
I figure if this diet does what we want it to, this blog is going to get real boring, real fast. I'm totally ok with that but my lovely blog readers might not be. My life hasn't been boring in years and a little bit of boredom is an ok thing once in awhile. Too much boredom and you tend to get lazy. I can't afford to get lazy, yet. James still has a long, hard road ahead of him and he's going to need his mom.
Today, James had an occupational therapy appointment with Nina and he decided to take a few little steps down that path that is sprawled out ahead of him. He has this beautiful, new relaxed feel about him. He's always had a laid back attitude but now his body seems to be following suit. His mind and body seem to be working harmoniously together and they're starting to do some great things. He's been laughing and babbling so much more. He's turning into quite the chatterbox! Still mostly open mouth vowel sounds bet hey, it's a great start! He has also found himself in the mirror and it appears that he likes who he sees! Why wouldn't he? He is a handsome little fellow! He smiles and laughs at his reflection, which I learned today is the skill level of a one year old! Up until now, James had only the capabilities of a six month old. What a tremendous leap in the life skills department! This mama is proud. The final figurative step on his path is in the gross motor department, somewhere he's been deeply lacking for his full two and a half years. Nina was holding his bumpy textured, blue ball and he reached up with BOTH hands and took it from her! He has never, NEVER done that before. Incredible!
Great progress:
James remains seizure free (knock.knock) and 3 baby steps forward: 1 speech, 1 cognitive, 1 gross motor.
Without continual growth and progress, such words as improvement, achievement, and success have no meaning. -Ben Franklin
Tuesday, December 6, 2011
Days 21 & 22
Well...
JAMES HAD A SEIZURE FREE WEEKEND! ... AND IT'S CONTINUING!!
Day 20 + Day 21 + Day 22 = zero seizure activity.
Is this really, truly happening?
All of my birthday/Christmas/New Year/11:11/shooting star wishes have just come true!
I'm unbelievably happy.
The only downside to this is that the fear of him having a seizure will always be there. Lurking in the middle of my brain. I haven't been able to push it to the back of my mind yet. Too soon. I don't know that it will ever fully go away.
There are just some things you can't un-see.
Fear or no fear, his brain has had 3 full days of rest. Imagine what wonderful things that brain will be capable of once it is no longer stressed and hurting. Imagine what a fully healed, healthy, 2 1/2 year old brain is capable of. I can't wait to find out!
Good things handsome boy.
Great things. :)
JAMES HAD A SEIZURE FREE WEEKEND! ... AND IT'S CONTINUING!!
Day 20 + Day 21 + Day 22 = zero seizure activity.
Is this really, truly happening?
All of my birthday/Christmas/New Year/11:11/shooting star wishes have just come true!
I'm unbelievably happy.
The only downside to this is that the fear of him having a seizure will always be there. Lurking in the middle of my brain. I haven't been able to push it to the back of my mind yet. Too soon. I don't know that it will ever fully go away.
There are just some things you can't un-see.
Fear or no fear, his brain has had 3 full days of rest. Imagine what wonderful things that brain will be capable of once it is no longer stressed and hurting. Imagine what a fully healed, healthy, 2 1/2 year old brain is capable of. I can't wait to find out!
Good things handsome boy.
Great things. :)
Day 20!
DAY 20 IS MY MOST FAVORITE DAY EVER!!!!
NO SEIZURES!!!!!!!!!!!!!!!!!!!
This is James' first seizure free day in over 6 months!
Incredible!
Amazing!
Wonderful!
Glorious!
Overwhelming!
Extraordinary!
....hopefully not short lived...
NO SEIZURES!!!!!!!!!!!!!!!!!!!
This is James' first seizure free day in over 6 months!
Incredible!
Amazing!
Wonderful!
Glorious!
Overwhelming!
Extraordinary!
....hopefully not short lived...
Day 19
GLORIOUS IMPROVEMENT!!
Today he looks good! Increased attention, better focus, decreased urine retention, even his skin looks better!
No seizures during the day and only 6 at night! 6!
On a strange note, his seizures have changed yet again. For well over a year he has always looked to the right while having a seizure and now he's looking to the left. It's almost as though his seizures are disappearing in order of most recent onset.
The grand mal/tonic clonic went away first - those were his most recent seizures (prior to starting diet.)
Next the myoclonic jerks started to change. They became less and less physical.
Then it looked more like an absence seizure with his head turning to the right.
Now it's an absence with a head turn to the left.
The only seizures preceding the absence left-turn seizures were when he was 6 months old and they were too minute to see.
I think his brain is starting to heal itself. I have no other explanation. I truly believe in my gut that this is what's happening.
I'm nervously and cautiously optimistic!
Today he looks good! Increased attention, better focus, decreased urine retention, even his skin looks better!
No seizures during the day and only 6 at night! 6!
On a strange note, his seizures have changed yet again. For well over a year he has always looked to the right while having a seizure and now he's looking to the left. It's almost as though his seizures are disappearing in order of most recent onset.
The grand mal/tonic clonic went away first - those were his most recent seizures (prior to starting diet.)
Next the myoclonic jerks started to change. They became less and less physical.
Then it looked more like an absence seizure with his head turning to the right.
Now it's an absence with a head turn to the left.
The only seizures preceding the absence left-turn seizures were when he was 6 months old and they were too minute to see.
I think his brain is starting to heal itself. I have no other explanation. I truly believe in my gut that this is what's happening.
I'm nervously and cautiously optimistic!
Day 17 and 18
I'm lumping these 2 days together because, well, they sucked.
I had such high hopes for James starting the Ativan again and instead it's been a roller coaster ride.
Day 17 he only had 2 very tiny seizures for the entire day. I was SO excited! I thought we had cracked this case wide open. Then bed time rolled around and the seizures came on with a vengeance. Over and over and over again for 43 times. It was like a kick in the teeth. Such great improvement during the day and then WHAM! Worse.
Day 18 started off even better with NO seizures for the whole day. Bed time, dreaded bed time came and it was even worse than the previous night. 44 this go-around. I felt like someone had mopped the floor with me. Sad, defeated, discouraged barely describe how I felt that night.
I wonder if it's withdrawals from the Klonopin? Should we have weened him off? He had been on it for quite awhile.
Shoulda.Woulda.Coulda.
Onward we go...
I had such high hopes for James starting the Ativan again and instead it's been a roller coaster ride.
Day 17 he only had 2 very tiny seizures for the entire day. I was SO excited! I thought we had cracked this case wide open. Then bed time rolled around and the seizures came on with a vengeance. Over and over and over again for 43 times. It was like a kick in the teeth. Such great improvement during the day and then WHAM! Worse.
Day 18 started off even better with NO seizures for the whole day. Bed time, dreaded bed time came and it was even worse than the previous night. 44 this go-around. I felt like someone had mopped the floor with me. Sad, defeated, discouraged barely describe how I felt that night.
I wonder if it's withdrawals from the Klonopin? Should we have weened him off? He had been on it for quite awhile.
Shoulda.Woulda.Coulda.
Onward we go...
Day 16
Well, hello Day 16.
Today James is more awake and alert. His endurance for therapies has improved. He looks good. :)
I put in a call to James' neurologist today. I called to have his Diastat prescription refilled but insurance says they won't cover it. Apparently we used it too quickly. Really? Rectal diazepam is going to be the one drug of his I use recreationally? Wouldn't we be more likely to run out of the Klonopin which is taken orally if I was dipping into his meds? Sigh, whatever. I know there are sleezebag parents out there who have done it so I guess I can't blame the insurance company 100%. I just need my son to be safe.
Plan B.
Like I said, I need my son to be safe. Back to the neuro call. I explained to him the situation at CVS and said here's what I would like to see happen. I don't think his Klonopin has ever actually done anything to help him. Ativan used to make a difference and if they called that in to the pharmacy I know they'd fill it before they closed for the night. Thank goodness for doctors who listen! Our new plan is as follows:
Discontinue use of Klonopin and start new prescription of Ativan. We'll do this for about 8 weeks and then ween him off. Once this is finished, we'll be about 10 weeks into the diet and it should be working at it's full potential.
This will work. Ativan has worked briefly in the past. All we need is to cover him while the diet kicks in.
Today's seizure total is again at 14. Same as yesterday.
Today James is more awake and alert. His endurance for therapies has improved. He looks good. :)
I put in a call to James' neurologist today. I called to have his Diastat prescription refilled but insurance says they won't cover it. Apparently we used it too quickly. Really? Rectal diazepam is going to be the one drug of his I use recreationally? Wouldn't we be more likely to run out of the Klonopin which is taken orally if I was dipping into his meds? Sigh, whatever. I know there are sleezebag parents out there who have done it so I guess I can't blame the insurance company 100%. I just need my son to be safe.
Plan B.
Like I said, I need my son to be safe. Back to the neuro call. I explained to him the situation at CVS and said here's what I would like to see happen. I don't think his Klonopin has ever actually done anything to help him. Ativan used to make a difference and if they called that in to the pharmacy I know they'd fill it before they closed for the night. Thank goodness for doctors who listen! Our new plan is as follows:
Discontinue use of Klonopin and start new prescription of Ativan. We'll do this for about 8 weeks and then ween him off. Once this is finished, we'll be about 10 weeks into the diet and it should be working at it's full potential.
This will work. Ativan has worked briefly in the past. All we need is to cover him while the diet kicks in.
Today's seizure total is again at 14. Same as yesterday.
Day 15
Today was James' 2 1/2 year check up at his pediatrician's office. It went B-E-A-U-tifully. :)
For the first time, in a long time, James has gained weight! 28.5 pounds and he's 37" tall. Apparently this diet hasn't started to stunt his growth at all! I asked them to check his blood sugar level to make sure things are still running smoothly and it was perfect at 90. Woo-hoo!
I did bring his attention to the fact that James is still only urinating 1 -2 times daily. He's a little concerned and suggested that we see a urologist at Floating. I agree. I want to make sure there is no reflux up into his kidneys. 12 hours is far too long to go ... without, uh, going.
So, all in all thumbs up for this check up!
Weight gain? check!
Height increase? check!
Good blood sugar? check!
Flu shot? check!
Referral to specialist? check!
Today was a good day. 14 total seizures for the day. Again, 1/2 of yesterday's amount.
Things lookin' up? CHECK!
For the first time, in a long time, James has gained weight! 28.5 pounds and he's 37" tall. Apparently this diet hasn't started to stunt his growth at all! I asked them to check his blood sugar level to make sure things are still running smoothly and it was perfect at 90. Woo-hoo!
I did bring his attention to the fact that James is still only urinating 1 -2 times daily. He's a little concerned and suggested that we see a urologist at Floating. I agree. I want to make sure there is no reflux up into his kidneys. 12 hours is far too long to go ... without, uh, going.
So, all in all thumbs up for this check up!
Weight gain? check!
Height increase? check!
Good blood sugar? check!
Flu shot? check!
Referral to specialist? check!
Today was a good day. 14 total seizures for the day. Again, 1/2 of yesterday's amount.
Things lookin' up? CHECK!
Day 14/Benefit Day
Day 14 was a special day. Today there was a benefit held in Jamie's honor at the local American Legion. Martin's restaurant donated the food and about 100 people came out to help support my favorite little man. There was a raffle, a kids' raffle, and a silent auction. It was amazing. I'm humbled by the number of people who are there for our little family.
To everyone who attended or donated:
I promise that every penny will go to help James. I will keep you up to date on Jamie's doings and how your donations have helped him along the way. Great things are going to happen for my little man and each of you can take pride in knowing that you helped make that happen! Thank you from the bottom of my heart!
James slept through almost the entire benefit. He was in a decent mood while he was awake but it wasn't for very long. He had a great day seizure wise, probably because he slept so much.
After we got home though, the seizures started up again. Back to back to back. 25 to be exact. Half as many as yesterday, but not a great way to end such a wonderful day.
You take the good, you take the bad, you take them both, and there you have ... the facts of life, kid.
To everyone who attended or donated:
I promise that every penny will go to help James. I will keep you up to date on Jamie's doings and how your donations have helped him along the way. Great things are going to happen for my little man and each of you can take pride in knowing that you helped make that happen! Thank you from the bottom of my heart!
James slept through almost the entire benefit. He was in a decent mood while he was awake but it wasn't for very long. He had a great day seizure wise, probably because he slept so much.
After we got home though, the seizures started up again. Back to back to back. 25 to be exact. Half as many as yesterday, but not a great way to end such a wonderful day.
You take the good, you take the bad, you take them both, and there you have ... the facts of life, kid.
Friday, December 2, 2011
slaaaacking...
Sorry ... sorry ... sorry!
I've been a very bad blogger lately. I just finished putting together James' next 3 meals and I was about to start in on the "next day" but I just looked at the clock. Sadly, it is already 3:37 and I have to pick Liv up from Pre-K at 4. Where do the days go?! That's just not enough time to delve into keto-land.
be back ...
more to come.
I've been a very bad blogger lately. I just finished putting together James' next 3 meals and I was about to start in on the "next day" but I just looked at the clock. Sadly, it is already 3:37 and I have to pick Liv up from Pre-K at 4. Where do the days go?! That's just not enough time to delve into keto-land.
be back ...
more to come.
Saturday, November 26, 2011
Mr. Jamie-James is 2 1/2 today
Dear Mr. Jamie James,
You're getting to be an old man, my friend! Sometimes I feel as though this time has flown by and others, it feels as though time is just standing still. I feel as though it was just yesterday that we welcomed little 5 pound 15 ounces you into our family and at the same time, it feels as though you've always been here.
Today, my feelings are a mixed bag. I am tremendously happy to celebrate another (half) landmark in your life. Every single day I am thankful that you are here. There are so many times that one of your seizures could've taken you from us in the night. Just stolen away. No goodbye. No answer. No reason. I cherish every second I have you in my life. These hard times have allowed me to see how much good there is in our world. Good, that until we struggled, was overlooked and over shadowed by normalcy.
On the flip-side of this joyous half landmark, is the realization that another 6 months have passed. We are inching closer and closer to your third birthday. A day that, once again, I look forward to celebrating but am honestly dreading at the same time. When you turn three, all of your Early Intervention programs end. You'll have to start over at a new school with all new therapists. I'll have to trust others with you that I don't know that well. Not only do I have to trust that they will teach you your basic academics but that they'll teach you your much delayed life skills. They'll need to teach you to speak, to feed yourself, to sit, to walk, to be a pre school boy. And, in turn I have to trust that they will not harm you.
If you can't speak, you can't tell me if they hurt you.
If you can't sit, I have to trust that they won't leave you lying on the floor.
If you can't walk, I have to trust they will not let you fall or remain in harm's way.
I have to trust a lot and I am not ready to yet.
These next 6 months we have a lot to work on. Dada and I are going to move the dining room out into the garage and in it's place we're building you your own personal baby gym. We are planning out a strict schedule for you to work on all areas that require improvement. I'm going to recruit the help of your physical, occupational, and speech therapists. You are going to hate me but, someday, you will thank me. Your physiatrist in Boston, Dr. Brennan, informed us at your last visit that children who are sitting by age 3 typically walk whereas children who are not will remain in a wheelchair for life. I refuse to sit back and watch my boy be resigned to a wheelchair for his life. You are only at the beginning of your life and you are not going to remain seated throughout this show. You are going to feel what it is like to walk, to swim, and to run.
I am your mother and this is my promise:
I will do absolutely everything in my power to make sure you grow into the man that you are supposed to be.
So, for the next 6 months, you will report to baby boot camp every single day. Whether it is a weekday, weekend, or holiday is of no importance. I am going to work you so hard you will hate me. But, so help me God, I will walk you to the bus stop on your first day of kindergarten and I will watch you step up onto that bus by yourself.
We're going to make this happen kid. I see great things for you.
All my love,
Mama
You're getting to be an old man, my friend! Sometimes I feel as though this time has flown by and others, it feels as though time is just standing still. I feel as though it was just yesterday that we welcomed little 5 pound 15 ounces you into our family and at the same time, it feels as though you've always been here.
Today, my feelings are a mixed bag. I am tremendously happy to celebrate another (half) landmark in your life. Every single day I am thankful that you are here. There are so many times that one of your seizures could've taken you from us in the night. Just stolen away. No goodbye. No answer. No reason. I cherish every second I have you in my life. These hard times have allowed me to see how much good there is in our world. Good, that until we struggled, was overlooked and over shadowed by normalcy.
On the flip-side of this joyous half landmark, is the realization that another 6 months have passed. We are inching closer and closer to your third birthday. A day that, once again, I look forward to celebrating but am honestly dreading at the same time. When you turn three, all of your Early Intervention programs end. You'll have to start over at a new school with all new therapists. I'll have to trust others with you that I don't know that well. Not only do I have to trust that they will teach you your basic academics but that they'll teach you your much delayed life skills. They'll need to teach you to speak, to feed yourself, to sit, to walk, to be a pre school boy. And, in turn I have to trust that they will not harm you.
If you can't speak, you can't tell me if they hurt you.
If you can't sit, I have to trust that they won't leave you lying on the floor.
If you can't walk, I have to trust they will not let you fall or remain in harm's way.
I have to trust a lot and I am not ready to yet.
These next 6 months we have a lot to work on. Dada and I are going to move the dining room out into the garage and in it's place we're building you your own personal baby gym. We are planning out a strict schedule for you to work on all areas that require improvement. I'm going to recruit the help of your physical, occupational, and speech therapists. You are going to hate me but, someday, you will thank me. Your physiatrist in Boston, Dr. Brennan, informed us at your last visit that children who are sitting by age 3 typically walk whereas children who are not will remain in a wheelchair for life. I refuse to sit back and watch my boy be resigned to a wheelchair for his life. You are only at the beginning of your life and you are not going to remain seated throughout this show. You are going to feel what it is like to walk, to swim, and to run.
I am your mother and this is my promise:
I will do absolutely everything in my power to make sure you grow into the man that you are supposed to be.
So, for the next 6 months, you will report to baby boot camp every single day. Whether it is a weekday, weekend, or holiday is of no importance. I am going to work you so hard you will hate me. But, so help me God, I will walk you to the bus stop on your first day of kindergarten and I will watch you step up onto that bus by yourself.
We're going to make this happen kid. I see great things for you.
All my love,
Mama
Day 13
Day 13
I know that 13 is not considered a lucky number and for today, that rang true.
James has had 45 - 50 seizures. I'm not sure of the exact number because somewhere along the way my husband and I just lost count. There were two separate occurrences. The first was at 8AM consisting of about 25 seizures and then again at 9PM consisting of another 25 - give or take. Both required the use of his Diastat prescription. Fortunately, the dose was enough to stop the myoclonic seizures and take him out of status.
Due to the seizures and the medicine, James was off all day. He was very tired and nowhere close to his usual routine. Also, he hasn't urinated today. Not once. He's had plenty to drink and doesn't appear to be dehydrated. Still, though, no wet diapers. I'm going to have to keep a close eye on this because it's new, and strange. He has been having fewer wet diapers since starting the diet but never none. I'll have to call his PCP in the AM if nothing happens overnight.
Today was mostly cons...
Multiple myoclonic seizures continuing back to back for 10+ minutes at two separate occasions.
Had to use Diastat to stop both AM and PM seizure clusters.
No urination.
Pro ...
his rescue medicine worked both times it was required.
I know that 13 is not considered a lucky number and for today, that rang true.
James has had 45 - 50 seizures. I'm not sure of the exact number because somewhere along the way my husband and I just lost count. There were two separate occurrences. The first was at 8AM consisting of about 25 seizures and then again at 9PM consisting of another 25 - give or take. Both required the use of his Diastat prescription. Fortunately, the dose was enough to stop the myoclonic seizures and take him out of status.
Due to the seizures and the medicine, James was off all day. He was very tired and nowhere close to his usual routine. Also, he hasn't urinated today. Not once. He's had plenty to drink and doesn't appear to be dehydrated. Still, though, no wet diapers. I'm going to have to keep a close eye on this because it's new, and strange. He has been having fewer wet diapers since starting the diet but never none. I'll have to call his PCP in the AM if nothing happens overnight.
Today was mostly cons...
Multiple myoclonic seizures continuing back to back for 10+ minutes at two separate occasions.
Had to use Diastat to stop both AM and PM seizure clusters.
No urination.
Pro ...
his rescue medicine worked both times it was required.
Day 12
Day 12 ...
Today was a total of 24 seizures. Not great, but not terrible either. It seems as though we're alternating good days and bad days. Hopefully it will start to lean more towards good on the spectrum.
Nothing really new to report.
I feel as though I spend all of my time preparing teeny tiny meals. lol.
...but ya gotta have faith.
Today was a total of 24 seizures. Not great, but not terrible either. It seems as though we're alternating good days and bad days. Hopefully it will start to lean more towards good on the spectrum.
Nothing really new to report.
I feel as though I spend all of my time preparing teeny tiny meals. lol.
...but ya gotta have faith.
Thursday, November 24, 2011
Day 11 - Happy Turkey Day!
If the only prayer you said in your whole life was, "thank you," that would suffice.
~Meister Eckhart
It's day 11 and I'm having one of those moments where I wish this would hurry up and work.
but...
It's also Thanksgiving and I need to remember to be thankful for where we're at and how far we've come.
Seizure wise, James had a great day with a total of 4! The down side is that he slept until 9AM (originally I was quite thankful for this!), napped from 1:30-5:30, and was back asleep at 8. He was very lethargic today. I'd blame it on the turkey but, he ate chicken I had prepared at home. No faulting the tryptophan for this sleepiness.
While awake, he was quite happy. He giggled and babbled. He's such an awesome kid!
Today, I've also noticed that his eating skills have improved dramatically. The coordination it takes to chew and swallow has really come along. His occupational therapist, Barbara, is going to be amazed! Thumbs up! :)
Also, I thought his battle with constipation had returned but, I was wrong. It appears this diet is still doing great things for him GI wise. Thumbs up again!
So...
Thankful for:
-less seizures than yesterday
-improved chewing/swallowing/oral coordination
-continued regularity of GI system
Not so thankful for:
-VERY lethargic today
~Meister Eckhart
It's day 11 and I'm having one of those moments where I wish this would hurry up and work.
but...
It's also Thanksgiving and I need to remember to be thankful for where we're at and how far we've come.
Seizure wise, James had a great day with a total of 4! The down side is that he slept until 9AM (originally I was quite thankful for this!), napped from 1:30-5:30, and was back asleep at 8. He was very lethargic today. I'd blame it on the turkey but, he ate chicken I had prepared at home. No faulting the tryptophan for this sleepiness.
While awake, he was quite happy. He giggled and babbled. He's such an awesome kid!
Today, I've also noticed that his eating skills have improved dramatically. The coordination it takes to chew and swallow has really come along. His occupational therapist, Barbara, is going to be amazed! Thumbs up! :)
Also, I thought his battle with constipation had returned but, I was wrong. It appears this diet is still doing great things for him GI wise. Thumbs up again!
So...
Thankful for:
-less seizures than yesterday
-improved chewing/swallowing/oral coordination
-continued regularity of GI system
Not so thankful for:
-VERY lethargic today
Day 10
Day 10 ... well, actually, let me start with night 9.
Night 9 James was very irritable. I hadn't seen him act that way in a long time. I'd get him to settle down and stop fighting me and then eventually he would doze off. I'd walk him into his room, lie him in his crib, hook him up to his pulse/ox and very quietly sneak out. Not even 5 minutes later he'd start fussing all over again. We did this little song and dance until about 2AM. I think he eventually just wore himself out from all the crying, arching, and hitting.
I'll now consider it Day 10...
At about 4:30, Mike and I were woken up by a sound that we hadn't heard in awhile. The high pitched beep from the pulse/ox. We rushed downstairs and James was in the middle of a seizure where his oxygen level dropped down to 70%. He came out of it on his own without the use of emergency meds but did have some minor seizures that followed most likely a postictal state. We brought him up into our bed and he did manage to fall back asleep for a few hours.
The rest of the day was pretty run of the mill. He did have some of his neurological fits and his final seizure count was at 17, not including the tonic-clonic and it's postictal ones. I'm not sure how they want me to count that - or if they want me to count the postictal twitches. I made a note of it in his binder.
SO...
Pro/con combo : had a tonic-clonic seizure but it was only one, no relapse, and he came out of it on his own. He did not require use of Diastat and the postictal stage was short - maybe 10 minutes.
Night 9 James was very irritable. I hadn't seen him act that way in a long time. I'd get him to settle down and stop fighting me and then eventually he would doze off. I'd walk him into his room, lie him in his crib, hook him up to his pulse/ox and very quietly sneak out. Not even 5 minutes later he'd start fussing all over again. We did this little song and dance until about 2AM. I think he eventually just wore himself out from all the crying, arching, and hitting.
I'll now consider it Day 10...
At about 4:30, Mike and I were woken up by a sound that we hadn't heard in awhile. The high pitched beep from the pulse/ox. We rushed downstairs and James was in the middle of a seizure where his oxygen level dropped down to 70%. He came out of it on his own without the use of emergency meds but did have some minor seizures that followed most likely a postictal state. We brought him up into our bed and he did manage to fall back asleep for a few hours.
The rest of the day was pretty run of the mill. He did have some of his neurological fits and his final seizure count was at 17, not including the tonic-clonic and it's postictal ones. I'm not sure how they want me to count that - or if they want me to count the postictal twitches. I made a note of it in his binder.
SO...
Pro/con combo : had a tonic-clonic seizure but it was only one, no relapse, and he came out of it on his own. He did not require use of Diastat and the postictal stage was short - maybe 10 minutes.
Tuesday, November 22, 2011
Day 9
Day 9 is the day we got back into our usual routine. On Tuesdays James has speech therapy and physical therapy in the morning.
Speech therapy - Caitlyn agrees (YES!) that he is making more sounds. :) More often and more of them. The downside of therapy this morning was the seizure activity. James was still sleeping when she arrived so I had to wake him. I've found that if I mess with this little man's sleep his mind is affected by it. If I wake him from sleep, either overnight or nap time, he always seems to have some sort of seizure activity that follows. 17 myoclonic ones in this case. He did settle down and they resolved on their own which was a good sign.
Physical therapy - he was amazing! I thought for sure he'd be too tired but what a trooper! He sat, stood, played, babbled. He did anything and everything that Kristie asked him to do. What a great session to watch! Kristie also commented on my new finding of the day - calm.
Ohhhhhmmmmmm. :)
James body seems SO much more relaxed now. He used to have these "neurological fits" quite often throughout the day which never seemed to stem from one particular source. But, today, his body was quiet. He looked overall relaxed. His only "fit", I don't know what they actually are so this is the best I can describe it, came after dinner. It also came about 30 minutes after his dose of Clonazepam. I think his body has a strange reaction to it. I think it makes him jittery rather than calm. Kind of like I can't take Tylenol PM. I will fall asleep initially but then I wake up and pace the house with muscle spasms until it wears off. Super relaxing. Again, the weird quirks were most likely inherited from me. lol.
Spoke with Toni, his dietitian today also. She said that moderate - large is fine for the ketones. Any lower or higher and we'll have to reassess his dietary restrictions. As for now, continue the course.
So, to sum it up...
Good day!
Pros:
much more calm/relaxed overall
increased verbal sounds and use
Cons:
increased seizure activity since yesterday
Questions:
Adverse reaction to Clonazepam?
Sleep disturbance cause of seizures? (this is probably one of those "duh" questions but worth noting. My blog. My rules.)
Speech therapy - Caitlyn agrees (YES!) that he is making more sounds. :) More often and more of them. The downside of therapy this morning was the seizure activity. James was still sleeping when she arrived so I had to wake him. I've found that if I mess with this little man's sleep his mind is affected by it. If I wake him from sleep, either overnight or nap time, he always seems to have some sort of seizure activity that follows. 17 myoclonic ones in this case. He did settle down and they resolved on their own which was a good sign.
Physical therapy - he was amazing! I thought for sure he'd be too tired but what a trooper! He sat, stood, played, babbled. He did anything and everything that Kristie asked him to do. What a great session to watch! Kristie also commented on my new finding of the day - calm.
Ohhhhhmmmmmm. :)
James body seems SO much more relaxed now. He used to have these "neurological fits" quite often throughout the day which never seemed to stem from one particular source. But, today, his body was quiet. He looked overall relaxed. His only "fit", I don't know what they actually are so this is the best I can describe it, came after dinner. It also came about 30 minutes after his dose of Clonazepam. I think his body has a strange reaction to it. I think it makes him jittery rather than calm. Kind of like I can't take Tylenol PM. I will fall asleep initially but then I wake up and pace the house with muscle spasms until it wears off. Super relaxing. Again, the weird quirks were most likely inherited from me. lol.
Spoke with Toni, his dietitian today also. She said that moderate - large is fine for the ketones. Any lower or higher and we'll have to reassess his dietary restrictions. As for now, continue the course.
So, to sum it up...
Good day!
Pros:
much more calm/relaxed overall
increased verbal sounds and use
Cons:
increased seizure activity since yesterday
Questions:
Adverse reaction to Clonazepam?
Sleep disturbance cause of seizures? (this is probably one of those "duh" questions but worth noting. My blog. My rules.)
Day 8
Week #2 in the house! lol.
Day 8 was great seizure wise. 4 total! :o)
However, James is still super lethargic. I cancelled his pool therapy over at South Shore Hospital because he just wanted to keep on napping. Why fight to keep him awake if this is what his body is telling him to do? I let him have a lazy day and sleep in.
He stayed in bed for most of the day but when he woke up, he was like a new little man. His eyes were so much clearer and he giggled and belly laughed, oh, it was wonderful. I'm hoping he's turning a corner.
Very cautiously enthusiastic.
Pros: clear/bright eyed. Better concentration. Decreased seizures.
Cons: very lethargic.
On to the next ...
Day 8 was great seizure wise. 4 total! :o)
However, James is still super lethargic. I cancelled his pool therapy over at South Shore Hospital because he just wanted to keep on napping. Why fight to keep him awake if this is what his body is telling him to do? I let him have a lazy day and sleep in.
He stayed in bed for most of the day but when he woke up, he was like a new little man. His eyes were so much clearer and he giggled and belly laughed, oh, it was wonderful. I'm hoping he's turning a corner.
Very cautiously enthusiastic.
Pros: clear/bright eyed. Better concentration. Decreased seizures.
Cons: very lethargic.
On to the next ...
Day 7
Woooooooo.
One week in. Day 7.
Day 7, fortunately, was more reminiscent of Day 5 and not Day 6. I couldn't have done two Day 6's in a row. Well, it was more like Day 5 until right before bed. The entire day he had only 3 seizures. Then, just before we called it a day, he got started on a run of 20 myoclonic seizures. Fortunately, they resolved on their own. No need to administer extra meds. I hate drugging my son. What's worse, a seizing 2 year old or a heavily sedated, can't even pick his own head up toddler? Catch 22 I'd say. Both options suck.
Option3 - stick with the diet and keep your patience in check. Stop rushing the results and let it do it's job.
Option 3 it is.
His overall behavior is improving daily. And, even though he had 20+ seizures today, it's only half of what he had yesterday. So, therefore, improvement!
I'm not going to repeat all of his meals. They're the same until I get a little more comfortable and branch out. He still enjoys them and eats every gram without coercion.
Slight change in ketosis but no big whoop. This morning he tested "moderate" instead of "large". Still in ketosis but will mention it to his dietitian during our next chat.
New pros:
Overall continued improvement.
Less seizures than yesterday.
Decreased sensitivity to sounds - hooray! I can vacuum again!
Improved bowel/bladder function.
Continuing ketosis.
One week in. Day 7.
Day 7, fortunately, was more reminiscent of Day 5 and not Day 6. I couldn't have done two Day 6's in a row. Well, it was more like Day 5 until right before bed. The entire day he had only 3 seizures. Then, just before we called it a day, he got started on a run of 20 myoclonic seizures. Fortunately, they resolved on their own. No need to administer extra meds. I hate drugging my son. What's worse, a seizing 2 year old or a heavily sedated, can't even pick his own head up toddler? Catch 22 I'd say. Both options suck.
Option3 - stick with the diet and keep your patience in check. Stop rushing the results and let it do it's job.
Option 3 it is.
His overall behavior is improving daily. And, even though he had 20+ seizures today, it's only half of what he had yesterday. So, therefore, improvement!
I'm not going to repeat all of his meals. They're the same until I get a little more comfortable and branch out. He still enjoys them and eats every gram without coercion.
Slight change in ketosis but no big whoop. This morning he tested "moderate" instead of "large". Still in ketosis but will mention it to his dietitian during our next chat.
New pros:
Overall continued improvement.
Less seizures than yesterday.
Decreased sensitivity to sounds - hooray! I can vacuum again!
Improved bowel/bladder function.
Continuing ketosis.
Day 6
Sorry. I took a little hiatus from the blog for a few days. Day 6 really threw me for a loop and I had a hard time coming back on here to see Day 5's post.
OK, here we go...
Day 6, in a word, sucked. 51 seizures. 5-1. You read that right. I don't even remember what he ate or what we did that day. Actually, that's a partial lie. We went to Persey's for a late breakfast and we ended up having to give him his emergency seizure meds in the trunk of the car. After that, it's a little blurry.
PROS:
He has stayed in ketosis. That hasn't faltered.
His sleep is better.
His breathing is improved.
He is going to the bathroom on his own. Hooray, enemas are shitty - pun intended.
CONS:
The inconsistency of the seizures.
Carrying on ...
A little more cautious about my enthusiasm ...
I hate eating my words.
OK, here we go...
Day 6, in a word, sucked. 51 seizures. 5-1. You read that right. I don't even remember what he ate or what we did that day. Actually, that's a partial lie. We went to Persey's for a late breakfast and we ended up having to give him his emergency seizure meds in the trunk of the car. After that, it's a little blurry.
PROS:
He has stayed in ketosis. That hasn't faltered.
His sleep is better.
His breathing is improved.
He is going to the bathroom on his own. Hooray, enemas are shitty - pun intended.
CONS:
The inconsistency of the seizures.
Carrying on ...
A little more cautious about my enthusiasm ...
I hate eating my words.
Friday, November 18, 2011
Day 5
HE SLEPT THROUGH THE NIGHT!
Oh thank heavens! :) I think this is the first time he has slept for 7 hours straight since, well, maybe May? But this time it was on his own, not due to heavy medications. Woo-Hoo! Major improvement. Hopefully he'll keep this trend going! This wish is partly for selfish reasons. Mama's tired. :)
When James woke up, he woke up happy. He sat and played in his seat while I cooked him some breakfast. It wasn't the breakfast that I had planned because I forgot to buy the breakfast sausage and I can't just substitute something in for it all willy-nilly. Egg salad for breakfast? Sure. It's eggs. I served it with fruit.
OK, back to happy James...
He sat in his seat playing with a pop up toy while I cooked. He was giggling, cooing, and babbling like this was the best toy ever! It was wonderful to hear!! He looked amazing. Truly different.
After breakfast, I used a ketostick to make sure he was still in ketosis and that we hadn't unknowingly done anything to take him out of it. Perfection! This was the first time I had checked it at home. I was supposed to check it the night before but, well, there was a major poopy situation that prevented it. Haha!
James' energy appeared to be almost back to normal. He woke at 6, ate, and then played until 10:30 when he drank some water and went down for his nap. He slept until 2:00, woke up, and ate his lunch. After that we had to run over to the lab to have his bicarb level rechecked.
We pulled up to the lab and I put James in his stroller. He is just getting too big to carry around all the time. Turns out there's a bunch of stairs leading down to the lab and not a ramp in sight. Not the first time we've run into this. So, I pick him up, stroller and all, and head on down. The doctor had faxed everything over and there was nobody in the waiting room. Perfect - or so I thought.
Liv, James, and I went down the hall to the exam room. The tech was very good and got what she needed on the first try. She put his band-aid on and told us we were all set and we'd hear from the doctor soon. Still all good - and then I feel it. It feels like someone dumped a bucket of warm water in my lap. There is pee just pouring out of James' diaper! By now he's done and the damage is also done. I plop him back down in his stroller and assess my situation. My sweatshirt is a little wet in one spot but, man, it looks like I peed my pants! James has on black pants and you can't see the difference of wet and dry material. I, however, have on jeans, and the wetness runs from my zipper all the way down to my knees! I am soaked!! No worries. A quick jog down the hallway, up a couple of stairs and I'll be at the car. I'm just about to the waiting room when I realize the after work rush has filed in. There's only 2-3 empty seats now. I just smiled and nodded and made some comment about the weather and bee-lined it right for the door. It had somehow LOCKED! Now I'm locked in a room full of strangers in my peepee pants and they've all noticed. The two women on the far wall are giggling to each other. Oh the joys of motherhood.
My embarrassment was totally worth it. I'm happy to say that his doctor just called with the results and James has responded beautifully to the new medicine! Starting tomorrow morning we're cutting the dose in half and only giving it in the morning not twice daily. Another step in the right direction.
James is currently sound asleep and the day had a grand total of 2 myoclonic seizures. If this had been one week ago, the final tally would've been around 30. This is a miracle therapy. I'm keeping my fingers crossed. I know it's still early into the diet. But - wow!
Menu:
Breakfast
Egg salad w/ raspberries & blackberries
Lunch
H.N. beef frank w/ rasp & blackberries
Dinner
Egg salad w/ strawberries
Only used one albuterol/ipratroprium neb this morning. O2 sats while sleeping is currently at 94. Another big improvement. :)
Oh thank heavens! :) I think this is the first time he has slept for 7 hours straight since, well, maybe May? But this time it was on his own, not due to heavy medications. Woo-Hoo! Major improvement. Hopefully he'll keep this trend going! This wish is partly for selfish reasons. Mama's tired. :)
When James woke up, he woke up happy. He sat and played in his seat while I cooked him some breakfast. It wasn't the breakfast that I had planned because I forgot to buy the breakfast sausage and I can't just substitute something in for it all willy-nilly. Egg salad for breakfast? Sure. It's eggs. I served it with fruit.
OK, back to happy James...
He sat in his seat playing with a pop up toy while I cooked. He was giggling, cooing, and babbling like this was the best toy ever! It was wonderful to hear!! He looked amazing. Truly different.
After breakfast, I used a ketostick to make sure he was still in ketosis and that we hadn't unknowingly done anything to take him out of it. Perfection! This was the first time I had checked it at home. I was supposed to check it the night before but, well, there was a major poopy situation that prevented it. Haha!
James' energy appeared to be almost back to normal. He woke at 6, ate, and then played until 10:30 when he drank some water and went down for his nap. He slept until 2:00, woke up, and ate his lunch. After that we had to run over to the lab to have his bicarb level rechecked.
We pulled up to the lab and I put James in his stroller. He is just getting too big to carry around all the time. Turns out there's a bunch of stairs leading down to the lab and not a ramp in sight. Not the first time we've run into this. So, I pick him up, stroller and all, and head on down. The doctor had faxed everything over and there was nobody in the waiting room. Perfect - or so I thought.
Liv, James, and I went down the hall to the exam room. The tech was very good and got what she needed on the first try. She put his band-aid on and told us we were all set and we'd hear from the doctor soon. Still all good - and then I feel it. It feels like someone dumped a bucket of warm water in my lap. There is pee just pouring out of James' diaper! By now he's done and the damage is also done. I plop him back down in his stroller and assess my situation. My sweatshirt is a little wet in one spot but, man, it looks like I peed my pants! James has on black pants and you can't see the difference of wet and dry material. I, however, have on jeans, and the wetness runs from my zipper all the way down to my knees! I am soaked!! No worries. A quick jog down the hallway, up a couple of stairs and I'll be at the car. I'm just about to the waiting room when I realize the after work rush has filed in. There's only 2-3 empty seats now. I just smiled and nodded and made some comment about the weather and bee-lined it right for the door. It had somehow LOCKED! Now I'm locked in a room full of strangers in my peepee pants and they've all noticed. The two women on the far wall are giggling to each other. Oh the joys of motherhood.
My embarrassment was totally worth it. I'm happy to say that his doctor just called with the results and James has responded beautifully to the new medicine! Starting tomorrow morning we're cutting the dose in half and only giving it in the morning not twice daily. Another step in the right direction.
James is currently sound asleep and the day had a grand total of 2 myoclonic seizures. If this had been one week ago, the final tally would've been around 30. This is a miracle therapy. I'm keeping my fingers crossed. I know it's still early into the diet. But - wow!
Menu:
Breakfast
Egg salad w/ raspberries & blackberries
Lunch
H.N. beef frank w/ rasp & blackberries
Dinner
Egg salad w/ strawberries
Only used one albuterol/ipratroprium neb this morning. O2 sats while sleeping is currently at 94. Another big improvement. :)
Day 4
Today we go home!! Hooray!
The morning started out kind of rocky with myoclonic seizures spanning over 40 minutes. Fortunately, they didn't turn into a tonic-clonic one where he stops breathing. He did require 2 doses of Ativan which put him right back to sleep for a good chunk of the morning.
Once he woke up, he was like a new man! He ate and drank well. He sat in his seat for quite some time and played with his Little Einstein's piano. He really looked as though he was coming along. A lot more pep in his step.
We did have to pick up a new medication for James because his body was becoming too acidic. I guess it's prone to happen in younger children who start the diet.Very benign. We'll just have to keep an eye on it.
Breakfast and lunch were eaten in the hospital
eggnog meal
grilled chicken w/ green beans
Dinner we made for the first time at home
Hebrew National beef frank with raspberries.
It's still a little overwhelming to be home. There's so much to get used to but, once we do, it's going to be smooth sailing!
The morning started out kind of rocky with myoclonic seizures spanning over 40 minutes. Fortunately, they didn't turn into a tonic-clonic one where he stops breathing. He did require 2 doses of Ativan which put him right back to sleep for a good chunk of the morning.
Once he woke up, he was like a new man! He ate and drank well. He sat in his seat for quite some time and played with his Little Einstein's piano. He really looked as though he was coming along. A lot more pep in his step.
We did have to pick up a new medication for James because his body was becoming too acidic. I guess it's prone to happen in younger children who start the diet.Very benign. We'll just have to keep an eye on it.
Breakfast and lunch were eaten in the hospital
eggnog meal
grilled chicken w/ green beans
Dinner we made for the first time at home
Hebrew National beef frank with raspberries.
It's still a little overwhelming to be home. There's so much to get used to but, once we do, it's going to be smooth sailing!
Day 3
This post is, unfortunately, going to be kind of a wash. The hospital network wasn't working properly and every time I actually managed to get on, it would freeze up. So, I will do my best to recall the happenings of the day.
Overnight, he was relatively calm. He was awake and fussy between 10 and 1 but managed to sleep pretty well after that. No major seizure episodes to speak of but he had to sleep with oxygen on due to low O2 sats.
The morning was rather uneventful. He was still pretty lethargic from starting the diet but his blood sugar had stabilized and he was starting to look more like himself. There were moments where his eyes were clear and you could see something was changing for the better.
Unfortunately, his oxygen levels were hanging pretty low. Usually floating between 86-93 while awake. Albuterol nebulizer treatments and suction seemed to help him out though.
Day 3 menu:
Breakfast - eggnog meal
Lunch - grilled chicken w/ green beans
Dinner - egg salad w/ cantaloupe
He did start having some myoclonic seizures but he didn't require any medicine to stop them. They resolved on their own. There were only 5 over the span of 15 minutes. Getting there!
Overnight, he was relatively calm. He was awake and fussy between 10 and 1 but managed to sleep pretty well after that. No major seizure episodes to speak of but he had to sleep with oxygen on due to low O2 sats.
The morning was rather uneventful. He was still pretty lethargic from starting the diet but his blood sugar had stabilized and he was starting to look more like himself. There were moments where his eyes were clear and you could see something was changing for the better.
Unfortunately, his oxygen levels were hanging pretty low. Usually floating between 86-93 while awake. Albuterol nebulizer treatments and suction seemed to help him out though.
Day 3 menu:
Breakfast - eggnog meal
Lunch - grilled chicken w/ green beans
Dinner - egg salad w/ cantaloupe
He did start having some myoclonic seizures but he didn't require any medicine to stop them. They resolved on their own. There were only 5 over the span of 15 minutes. Getting there!
Tuesday, November 15, 2011
Day 2
OK.
Day 2.
After the adventures that this morning subjected us to, things have settled down and are, dare I say it, running smoothly. I just got the word about half an hour ago that James is now officially in ketosis! Hooray! The new therapy has finally begun!
The ketogenic diet isn't proving to be very difficult, just very time consuming. It sure is an enormous change from our usual daily lives. Every ounce of every ingredient must be weighed to within a tenth of a gram. No more. No less. When I get home, one of the very first things I need to purchase is itty-bitty tupperware containers. I also need to designate a space as the keto food prep work area. Keeping this diet organized is a must or it will fail. I am not willing to fail James.
I am using this blog to stay organized and help me keep track of the recipes made for James, how he liked them, any side effects, how he is acting in general, etc. I can use this blog as a reference when meeting with his doctors, dietitian, or nutritionist. Therefore, the rest of this post might be rather boring to some readers.
Breakfast - Eggnog Meal
90g Cream, 35g raw pasteurized egg, 5 drops vanilla extract.
Lunch - Egg salad/fruit
90g cream, 5g oil/ 27g of a 10% fruit (cantaloupe today)/ 10g egg yolk, 12g egg white, 2g mayo
Dinner - Tuna salad/mayonnaise/vegetable
90g cream/ 38g Group B veg (green beans today)/ 9g drained tuna, 12g mayo
Overall, James is mildly irritable and is increasingly lethargic. He has had a tough start to this new therapy and therefore, I shall cut the poor lad some slack. Lethargy and moodiness aside, he is ketonic which is a beautiful thing! I have such high hopes for this therapy.
Day 2.
After the adventures that this morning subjected us to, things have settled down and are, dare I say it, running smoothly. I just got the word about half an hour ago that James is now officially in ketosis! Hooray! The new therapy has finally begun!
The ketogenic diet isn't proving to be very difficult, just very time consuming. It sure is an enormous change from our usual daily lives. Every ounce of every ingredient must be weighed to within a tenth of a gram. No more. No less. When I get home, one of the very first things I need to purchase is itty-bitty tupperware containers. I also need to designate a space as the keto food prep work area. Keeping this diet organized is a must or it will fail. I am not willing to fail James.
I am using this blog to stay organized and help me keep track of the recipes made for James, how he liked them, any side effects, how he is acting in general, etc. I can use this blog as a reference when meeting with his doctors, dietitian, or nutritionist. Therefore, the rest of this post might be rather boring to some readers.
Breakfast - Eggnog Meal
90g Cream, 35g raw pasteurized egg, 5 drops vanilla extract.
Lunch - Egg salad/fruit
90g cream, 5g oil/ 27g of a 10% fruit (cantaloupe today)/ 10g egg yolk, 12g egg white, 2g mayo
Dinner - Tuna salad/mayonnaise/vegetable
90g cream/ 38g Group B veg (green beans today)/ 9g drained tuna, 12g mayo
Overall, James is mildly irritable and is increasingly lethargic. He has had a tough start to this new therapy and therefore, I shall cut the poor lad some slack. Lethargy and moodiness aside, he is ketonic which is a beautiful thing! I have such high hopes for this therapy.
Watching a little Mickey-the-Mouse while letting the EEG do it's thing.
Morning 2 melt down
At 6AM my mom-tuition woke me up. I sat up and looked around the room. Everything seemed to be ok. I checked James and all of his monitors. All ok. I checked to make sure all of my things were still in the room and they were. My intuition is very rarely off, especially if it's strong enough to wake me. I decided to lie back down, listen to some music, and wait for whatever "it" was to come.
About 1 minute later, James' nurse came in to the room to let me know that his blood sugar levels were very low and the doctors were concerned. It was decided that he'd get 25ml's of apple juice and we'd check it again in 30 minutes to see how much it had improved.
I gave him his apple juice which he took with great happiness! What kid doesn't love apple juice? While I was doing that, the nurse had taken, and then retaken, and retaken a third time, James' blood pressure. She said it too was very low and she stepped out to go inform the doctor in charge of James' care. I sat back down on my bed and still couldn't shake the feeling that something else was in the works.
I drank some water and checked out my newsfeed on facebook still bothered by an unsettled feeling, when I saw it. I knew why I was awake now. I watched James' heart rate jump from 98 to 150 in a flash. I jumped out of my bed and sure enough he was having a seizure. I rang the nurse, clicked the sensor on the EEG, and settled in at James' side.
It was one of his small seizures. It presents as an absence seizure but also has a myoclonic jerk with it. I'm not sure which one the neurologists would like to classify it under, but I've labeled it as "small". That label works just fine for Mike and I. They only last for 4-5 seconds and don't appear to have a postictal stage but, if they cluster together he'll need his Diastat rescue medicine.
The "small" seizures are clustered and after 10 minutes he is given Ativan since they had to put in an IV after yesterday's seizures. 15 minutes pass and he seems to be settling down. The team of doctors and nurses that have congregated by his bed side start to disperse. His nurse stays with us to monitor the situation and make sure that the medication has in fact done it's job.
James appears to be calm and sleepy when he has this itty bitty seizure. It initially appeared almost like a twitch not too alarming but then he "got stuck". Again, that's not proper terminology but it is exactly what it looks like. He's lost somewhere in his mind. His stare is unproductive. He's looking but not seeing. I am unsure if he can hear me but I like to think he can. When he "gets stuck" is when the seizures go from mettlesome to scary. He no longer twitches but his body has a rhythmic pulsing and he stops breathing all together. If you imagine a grand mal seizure from a scene in a movie, it's similar in a sense but not so dramatic. It's less obvious but much more concerning. The most concerning part is that he's "stuck" and I never know for sure what will "unstick" him.
We rang for the team again, kept clicking the EEG, and he now received his Diastat. Still stuck.
Oxygen. Suction. Seizure breaks.
Back in. Stuck again. Longer. Oxygen. Suction. Break.
6:28 .... 6:38 ... 6:48 ... 7AM.
Sleeping.
New plan.
About 1 minute later, James' nurse came in to the room to let me know that his blood sugar levels were very low and the doctors were concerned. It was decided that he'd get 25ml's of apple juice and we'd check it again in 30 minutes to see how much it had improved.
I gave him his apple juice which he took with great happiness! What kid doesn't love apple juice? While I was doing that, the nurse had taken, and then retaken, and retaken a third time, James' blood pressure. She said it too was very low and she stepped out to go inform the doctor in charge of James' care. I sat back down on my bed and still couldn't shake the feeling that something else was in the works.
I drank some water and checked out my newsfeed on facebook still bothered by an unsettled feeling, when I saw it. I knew why I was awake now. I watched James' heart rate jump from 98 to 150 in a flash. I jumped out of my bed and sure enough he was having a seizure. I rang the nurse, clicked the sensor on the EEG, and settled in at James' side.
It was one of his small seizures. It presents as an absence seizure but also has a myoclonic jerk with it. I'm not sure which one the neurologists would like to classify it under, but I've labeled it as "small". That label works just fine for Mike and I. They only last for 4-5 seconds and don't appear to have a postictal stage but, if they cluster together he'll need his Diastat rescue medicine.
The "small" seizures are clustered and after 10 minutes he is given Ativan since they had to put in an IV after yesterday's seizures. 15 minutes pass and he seems to be settling down. The team of doctors and nurses that have congregated by his bed side start to disperse. His nurse stays with us to monitor the situation and make sure that the medication has in fact done it's job.
James appears to be calm and sleepy when he has this itty bitty seizure. It initially appeared almost like a twitch not too alarming but then he "got stuck". Again, that's not proper terminology but it is exactly what it looks like. He's lost somewhere in his mind. His stare is unproductive. He's looking but not seeing. I am unsure if he can hear me but I like to think he can. When he "gets stuck" is when the seizures go from mettlesome to scary. He no longer twitches but his body has a rhythmic pulsing and he stops breathing all together. If you imagine a grand mal seizure from a scene in a movie, it's similar in a sense but not so dramatic. It's less obvious but much more concerning. The most concerning part is that he's "stuck" and I never know for sure what will "unstick" him.
We rang for the team again, kept clicking the EEG, and he now received his Diastat. Still stuck.
Oxygen. Suction. Seizure breaks.
Back in. Stuck again. Longer. Oxygen. Suction. Break.
6:28 .... 6:38 ... 6:48 ... 7AM.
Sleeping.
New plan.
Night 1
The night was pretty quiet.
James was still not allowed to eat but he did manage to fulfill his water requirements for day 1. He was irritable, probably due to being hungry, but otherwise rather close to his usual laid back, easy going self. It took some time to get him to fall asleep initially but then he slept from 11PM -2AM. At 2, he woke up suddenly and seemed as though something was bothering him but I couldn't pin point exactly what it was. His EEG was still jumping all over the place but nothing seemed out of sorts so I gave him the best medicine in the world - Mommy Love. I climbed right into his crib and snuggled and sang to him until 4 AM when he finally dozed back off to sleep. I also went right back to sleep in my bed on the other side of the room. At the time, I didn't know it, but it's a damn good thing I got some rest. I had no idea what laid ahead of me come 6AM.
James was still not allowed to eat but he did manage to fulfill his water requirements for day 1. He was irritable, probably due to being hungry, but otherwise rather close to his usual laid back, easy going self. It took some time to get him to fall asleep initially but then he slept from 11PM -2AM. At 2, he woke up suddenly and seemed as though something was bothering him but I couldn't pin point exactly what it was. His EEG was still jumping all over the place but nothing seemed out of sorts so I gave him the best medicine in the world - Mommy Love. I climbed right into his crib and snuggled and sang to him until 4 AM when he finally dozed back off to sleep. I also went right back to sleep in my bed on the other side of the room. At the time, I didn't know it, but it's a damn good thing I got some rest. I had no idea what laid ahead of me come 6AM.
Monday, November 14, 2011
Day 1
Today started off reminding me exactly why my husband and I are subjecting our son James to such a strict and regimented diet. Mike and I were sound asleep upstairs at 4:30 AM when we heard James' monitors start blaring through the baby monitor in our room. We both jumped out of bed and hit the ground running.
It was apparent as soon as we were crib side that James was in the midst of a particularly nasty tonic-clonic seizure. The oxygen was cranked up high and we rolled him on his side, all part of the usual routine. We both knew this one wasn't going to end easily and would require his rescue medicine. To watch your son continue to shake and convulse even though he has stopped breathing is hard enough, but to have it start all over again once it has ended is just utterly crushing. I honestly feel as though I die a little bit every time a seizure racks his 26 pound body. I wouldn't wish this upon my greatest enemy. Nobody deserves their own body to betray them relentlessly.
Afterwards, we got ready and finished packing up everything that we'd need for our 3-5 day stay; gram scale, compounded medications, books, etc., and got in the car to head into Boston.
The ride in was pretty much what you would expect on a Monday morning, bumper to bumper but moving along nonetheless. Parking was a breeze for once and we set off to find patient admitting in the Proger Building. First in line and all checked in ... with nowhere to go. Hurry up and wait I suppose. We waited for a bit over in the Neurology department for James' room to be ready for him up on 7.
Once up in the room we began to unpack and answer all the usual questions about James. For a 2 1/2 year old he has quite the extensive medical record. He was still quite drowsy from his rescue medication this morning and had been sleeping on and off. Mike stayed and talked to the nurses and doctors for as long as possible. He was due at the job site by noon. He kissed us goodbye and set off to "start" his day.
After he had left, I finally managed to rouse James from his slumber. It was officially time to start his diet! His very first ketogenic meal was eggnog meal. Mmm, tasty. It consisted of 90 grams of heavy cream mixed together with 35 grams of pasteurized raw eggs. It sounds disgusting, because it is, but if it helps James it's entirely worth it. He finished his beverage and I washed everything out in the sink. He seemed to be getting back to his usual self and I thought it would be fun to sit him in his seat and play with the ipad for a bit. He loves playing the games with the peekaboo animals. It's adorable. He had only been playing for 5 minutes when the seizures started all over again.
Another reminder of why we're here that I didn't need. Time speeds up from that moment. It's different when we're not at home. Nurse call button. Doors opening. James is back on the bed. Blue lips. Gray skin. That awful stare. Oxygen. IV. More rescue medications. Back to sleep.
It is now currently 4:33PM and my sweet boy is still asleep while I type. He even slept through being hooked up to the EEG machine. There is definitely unrest in his mind. The spikes, XL spikes, and events are lighting up the screen as though it were the Fourth of July.
He has also slept through phone calls to pharmacies and insurance companies. The pharmacy at the hospital discovered that one of his medicines wasn't compounded correctly and would have undermined all of the dietary efforts. Now the insurance companies don't want to pay because they've already paid for it once. They don't seem to care that James can't take it since it was processed incorrectly.
I haven't progressed any further with the diet. His next meal is still sitting on the rectangular table at the foot of his bed. Actually, Toni just came in with a new update. The neurologists now want him to refrain from eating until 12 hours have passed from the time the rescue medications were administered. Did you know that fasting was a treatment for seizures back in biblical times? Well, now you do.
So, plans have changed, again, but we'll roll with it.
As long as we get where we're going, who cares how we got there?
It was apparent as soon as we were crib side that James was in the midst of a particularly nasty tonic-clonic seizure. The oxygen was cranked up high and we rolled him on his side, all part of the usual routine. We both knew this one wasn't going to end easily and would require his rescue medicine. To watch your son continue to shake and convulse even though he has stopped breathing is hard enough, but to have it start all over again once it has ended is just utterly crushing. I honestly feel as though I die a little bit every time a seizure racks his 26 pound body. I wouldn't wish this upon my greatest enemy. Nobody deserves their own body to betray them relentlessly.
Afterwards, we got ready and finished packing up everything that we'd need for our 3-5 day stay; gram scale, compounded medications, books, etc., and got in the car to head into Boston.
The ride in was pretty much what you would expect on a Monday morning, bumper to bumper but moving along nonetheless. Parking was a breeze for once and we set off to find patient admitting in the Proger Building. First in line and all checked in ... with nowhere to go. Hurry up and wait I suppose. We waited for a bit over in the Neurology department for James' room to be ready for him up on 7.
Once up in the room we began to unpack and answer all the usual questions about James. For a 2 1/2 year old he has quite the extensive medical record. He was still quite drowsy from his rescue medication this morning and had been sleeping on and off. Mike stayed and talked to the nurses and doctors for as long as possible. He was due at the job site by noon. He kissed us goodbye and set off to "start" his day.
After he had left, I finally managed to rouse James from his slumber. It was officially time to start his diet! His very first ketogenic meal was eggnog meal. Mmm, tasty. It consisted of 90 grams of heavy cream mixed together with 35 grams of pasteurized raw eggs. It sounds disgusting, because it is, but if it helps James it's entirely worth it. He finished his beverage and I washed everything out in the sink. He seemed to be getting back to his usual self and I thought it would be fun to sit him in his seat and play with the ipad for a bit. He loves playing the games with the peekaboo animals. It's adorable. He had only been playing for 5 minutes when the seizures started all over again.
Another reminder of why we're here that I didn't need. Time speeds up from that moment. It's different when we're not at home. Nurse call button. Doors opening. James is back on the bed. Blue lips. Gray skin. That awful stare. Oxygen. IV. More rescue medications. Back to sleep.
It is now currently 4:33PM and my sweet boy is still asleep while I type. He even slept through being hooked up to the EEG machine. There is definitely unrest in his mind. The spikes, XL spikes, and events are lighting up the screen as though it were the Fourth of July.
He has also slept through phone calls to pharmacies and insurance companies. The pharmacy at the hospital discovered that one of his medicines wasn't compounded correctly and would have undermined all of the dietary efforts. Now the insurance companies don't want to pay because they've already paid for it once. They don't seem to care that James can't take it since it was processed incorrectly.
I haven't progressed any further with the diet. His next meal is still sitting on the rectangular table at the foot of his bed. Actually, Toni just came in with a new update. The neurologists now want him to refrain from eating until 12 hours have passed from the time the rescue medications were administered. Did you know that fasting was a treatment for seizures back in biblical times? Well, now you do.
So, plans have changed, again, but we'll roll with it.
As long as we get where we're going, who cares how we got there?
Ketogenic Diet Take 1
Today is a day that we in the Dodge family have waited to arrive for some time now. James has finally been admitted into Floating Hospital to begin the Ketogenic Diet. We have such high hopes for this treatment. We know you're never supposed to put all your eggs in one basket but, when it comes to James' seizures, this is the only basket we have left. We're all in now. All or nothing.
The view from our room.
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