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.
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