It is no secret for those who know me that I love beverages. I have an entire board on Pintrest dedicated to them. It's probably a really good thing that I don't drink alcohol, because I would probably spend a good chunk of money on fruity drinks :) Cocktails turn into mocktails around here, but there is still something satisfying about mixing flavors to come up with a new wonderful combination. For example, last night I made a strawberry, pineapple, coconut, vanilla, Sprite concoction that was awesome! I think I would make a pretty good bar tender. I could probably get really into Mixology.
When you are mixing and matching medications, it has been termed "cocktails" just like those fruity drinks with a toothpick.
It seems like through our constant tweaking lately we have found the perfect combination to buy us a short break. It is not a quick fix, but you don't stay drunk for days from one glass of wine. In theory, anti-epileptic drugs work on the brain like alcohol. It makes it sleepy, slows it down so that it can't fire off and have as many seizures. When Cole's brain is over-active, we have found (for now) that giving him a specific cocktail will buy us at least 8 hours without a tonic clonic. Now this is not something that we can do every day, but it has sure proven useful in the last two months.
Double dose of Keppra-an AED that he has been on for a long time.
5 mg of Diazepam (Valium)-a benzodiazepene
and 7.5 mL of IB Proufen-an anti-inflammatory
It doesn't matter if he has a fever or not. We have tried these things separately also as a form of rescue medication. Right now, it only works when you do all three together. Strange, I know. Weirder things have happened.
Monday, February 4, 2013
Sunday, February 3, 2013
Rush
My emotions are all over the place.
Cole has been granted a wish from Make A Wish! Truly, it has been a long journey.
I first applied for Make A Wish when we lived in Utah. Things were crazy, but my dear friend inspired me. Her daughter passed away just weeks before they got the news that she could be a Wish Kid. She told me that she would give anything to take that special trip with her daughter; and I was introduced to Give Kids The World Village.
I had been immersed in the special needs world for a little bit, but this was the first I had heard of the Village. She told me more about it and I looked it up online when I got home that night. Her story reminded me that life is fragile, and Cole had just turned the right age for applying, so I filled out the application online. Give Kids The World Village was so magical. I wanted to take Cole there. It was a place where no one is different, and dreams come true. After a couple of weeks without hearing anything, I called the office. I was told that they were waiting on paperwork from Cole's doctor. I never heard back.
We moved shortly afterwards and it was one of the last things from my mind. I was so busy trying to get everything else into order. However, when requesting Cole's medical records to take with me to Miami, I found amongst the papers the response from the doctor. Due to being uneducated about Dravet Syndrome, he personally took away the chance for Cole to receive a wish. I was livid. However, I calmed down and realized that everything happens for a reason and it probably was not the best time to travel with Cole any way. He was so sensitive to outside stimulation at the time and most likely would not have been able to fully appreciate and enjoy a trip. Hindsight truly is 20/20. I tucked away the thought of re-applying in our new state, since the chapter that grants the wish is based on where the child lives.
Fast forward. Time passed, we got Slugger, changed jobs three times, got used to school, etc. etc. Life was constant chaos. By this time we have made plenty of friends who have received wishes and a lot of them, from all over the world, go to the Village. December 2012, the darkest of times, rolled around and I remembered my sweet friend. Her desire to just have those few days of happiness completely dedicated to having a good time and spending time with her family. I felt it was time to apply.
My doctor was texting me every day at this point. I gave her a heads up that she was going to be contacted. Then crazy stuff started happening.
She spent over an hour on the phone with the foundation. She filled out tons of paperwork. Then more paperwork. SHE made the decision and told the foundation that haste was necessary. Sometimes it can take up to 18 months to grant a wish. I didn't mention anything to her about going right away. SHE asked for rush status. This is where a wish can be granted within 24 hours if necessary.
When Make A Wish called me and told me that Cole had been granted a wish, and had been placed on rush status...it was delightful and terrifying all at the same time. Someone who didn't even know us, agreed that things were so bad that there was to be no delay. I knew that he totally qualified for a wish, and had plenty of friends who had children with the same diagnosis who also got granted wishes. Everything from going to Justin Beiber concerts, building therapy rooms in their house, meeting The Cake Boss, getting a special expensive sport court in their back yard-lots of wishes, lots of happy memories. I knew that a wish was possible, but rush status is for kids for whom death is imminent. Right? Once again I had to face reality that things truly are harrowing around here. However, light entered and gratitude overwhelmed me. Make A Wish has made it possible for our dreams to come true. For Cole's dreams to come true.
The process has been so smooth and our wish granters are awesome. One is a big burly guy who has been a volunteer for 10 years. He said he has only cried once before. When he read Cole's application, he cried for the second time.
Give Kids The World Village was started when a little girl, Amy, died before her wish to go to Disney World was granted. The founder, Henry, was actually a POW in Auschwitz and other concentration camps during the Holocaust. His story of survival is inspiring. He lost everything, thought he was going to die, but beat the odds. He also ended up finding his sister who was sent to another camp. When he started the Village, it was because he knew what it was like to not know if you are going to wake up in the morning. He wanted to give hope. Even if it was just for a week. More than 80% of Make A Wish, Wish Kids, actually survive to adulthood. Something sparks inside of them and they fight even harder than before. Some sadly, like our beloved Charlotte, do not make it. Some of them don't even get to experience their wish. But GKTW is a place of magic, hope and peace. A resort that is totally dedicated to granting wishes for kids. We are so honored to become a part of this special family. The countdown has begun and I have been preparing Cole a little bit every day. From watching "Shampoo" on the Live Shamu Cam on the internet, to talking about Mickey. This little boy deserves everything. Make A Wish is helping us to make it happen. A whole week dedicated to doing whatever he wants. No doctors, no therapy, just fun.
Watch this video and be inspired, like I am. Even though I am having a hard time with Cole's suffering, I see his smile and hear his laugh every day. I can't wait to hear the constant barrage of giggles when we go on our wish trip. Thank you, Make A Wish of Mid-Atlantic. "A Dream Is A Wish Your Heart Makes" and it is our dream to just be together and watch Cole have the time of his life.
Cole has been granted a wish from Make A Wish! Truly, it has been a long journey.
I first applied for Make A Wish when we lived in Utah. Things were crazy, but my dear friend inspired me. Her daughter passed away just weeks before they got the news that she could be a Wish Kid. She told me that she would give anything to take that special trip with her daughter; and I was introduced to Give Kids The World Village.
I had been immersed in the special needs world for a little bit, but this was the first I had heard of the Village. She told me more about it and I looked it up online when I got home that night. Her story reminded me that life is fragile, and Cole had just turned the right age for applying, so I filled out the application online. Give Kids The World Village was so magical. I wanted to take Cole there. It was a place where no one is different, and dreams come true. After a couple of weeks without hearing anything, I called the office. I was told that they were waiting on paperwork from Cole's doctor. I never heard back.
We moved shortly afterwards and it was one of the last things from my mind. I was so busy trying to get everything else into order. However, when requesting Cole's medical records to take with me to Miami, I found amongst the papers the response from the doctor. Due to being uneducated about Dravet Syndrome, he personally took away the chance for Cole to receive a wish. I was livid. However, I calmed down and realized that everything happens for a reason and it probably was not the best time to travel with Cole any way. He was so sensitive to outside stimulation at the time and most likely would not have been able to fully appreciate and enjoy a trip. Hindsight truly is 20/20. I tucked away the thought of re-applying in our new state, since the chapter that grants the wish is based on where the child lives.
Fast forward. Time passed, we got Slugger, changed jobs three times, got used to school, etc. etc. Life was constant chaos. By this time we have made plenty of friends who have received wishes and a lot of them, from all over the world, go to the Village. December 2012, the darkest of times, rolled around and I remembered my sweet friend. Her desire to just have those few days of happiness completely dedicated to having a good time and spending time with her family. I felt it was time to apply.
My doctor was texting me every day at this point. I gave her a heads up that she was going to be contacted. Then crazy stuff started happening.
She spent over an hour on the phone with the foundation. She filled out tons of paperwork. Then more paperwork. SHE made the decision and told the foundation that haste was necessary. Sometimes it can take up to 18 months to grant a wish. I didn't mention anything to her about going right away. SHE asked for rush status. This is where a wish can be granted within 24 hours if necessary.
When Make A Wish called me and told me that Cole had been granted a wish, and had been placed on rush status...it was delightful and terrifying all at the same time. Someone who didn't even know us, agreed that things were so bad that there was to be no delay. I knew that he totally qualified for a wish, and had plenty of friends who had children with the same diagnosis who also got granted wishes. Everything from going to Justin Beiber concerts, building therapy rooms in their house, meeting The Cake Boss, getting a special expensive sport court in their back yard-lots of wishes, lots of happy memories. I knew that a wish was possible, but rush status is for kids for whom death is imminent. Right? Once again I had to face reality that things truly are harrowing around here. However, light entered and gratitude overwhelmed me. Make A Wish has made it possible for our dreams to come true. For Cole's dreams to come true.
The process has been so smooth and our wish granters are awesome. One is a big burly guy who has been a volunteer for 10 years. He said he has only cried once before. When he read Cole's application, he cried for the second time.
Give Kids The World Village was started when a little girl, Amy, died before her wish to go to Disney World was granted. The founder, Henry, was actually a POW in Auschwitz and other concentration camps during the Holocaust. His story of survival is inspiring. He lost everything, thought he was going to die, but beat the odds. He also ended up finding his sister who was sent to another camp. When he started the Village, it was because he knew what it was like to not know if you are going to wake up in the morning. He wanted to give hope. Even if it was just for a week. More than 80% of Make A Wish, Wish Kids, actually survive to adulthood. Something sparks inside of them and they fight even harder than before. Some sadly, like our beloved Charlotte, do not make it. Some of them don't even get to experience their wish. But GKTW is a place of magic, hope and peace. A resort that is totally dedicated to granting wishes for kids. We are so honored to become a part of this special family. The countdown has begun and I have been preparing Cole a little bit every day. From watching "Shampoo" on the Live Shamu Cam on the internet, to talking about Mickey. This little boy deserves everything. Make A Wish is helping us to make it happen. A whole week dedicated to doing whatever he wants. No doctors, no therapy, just fun.
Watch this video and be inspired, like I am. Even though I am having a hard time with Cole's suffering, I see his smile and hear his laugh every day. I can't wait to hear the constant barrage of giggles when we go on our wish trip. Thank you, Make A Wish of Mid-Atlantic. "A Dream Is A Wish Your Heart Makes" and it is our dream to just be together and watch Cole have the time of his life.
Monday, January 21, 2013
Just How Bad Is Bad?
So things have continued to be a whirlwind around here. People ask me how it has been going and honestly I don't know what to say. I don't want their pity or to make them uncomfortable. Sometimes they don't want to know, sometimes they do...but not all of it. I probably just say, "Not great" or "Okay". Translation: Bad. For those of you who wonder just how bad is bad? Here you go.
We had a Christmas Miracle, Part II; but not until we went through our personal version of hell. December proved to be very trying.
The Rocephin shots brought some relief. Cole was still struggling up to the day that we left for our vacation. Then he had 5 glorious days. There was still plenty of myo's and the dreadful nocturnal tonic clonics, but no day time major seizures! Christmas was not marred by the beast, like it usually is. Yes, there was still plenty of stress and waiting for the other shoe to drop and behavioral issues and myoclonics and, and, and....but we recognized that we were witnessing a miracle. A 12 hour journey, including incredible bladder control by Slugger, was completed without incident and there was time with family and loads and loads of presents! The antibiotics did what we thought they might. Gave him a little break in the cycle and at just the right time. We are so grateful.
The daily tonic clonics came back while we were gone. Then right before we left things settled down again, making us happy but confused. Even with picking up a cough from traveling, he had an even longer break, 8 days-which has not happened in over a year. Then things picked up fast and furious.
Re-cap on the last few months:
September-19 GTC's
October-17 GTC's
November-24 GTC's
December-40 GTC's
January to date-18 GTC's
So what exactly do these numbers mean? It really doesn't seem like they are that high...well, except for that 40. That number reflects only major seizures. What is major?
For us, right now, major seizures include most or all of the following:
Loss/altered state of consciousness
Full body convulsions
Drop in oxygen saturation
Need for rescue medications
Lasting over 1 minute
Post Ictal period that includes slowing of speech, sleeping, or Todd's Paralysis
Loss of bowel or bladder function
Post Ictal Blindness
A pretty big list! This means that Cole is still having plenty of seizures that we don't deem "major" right now. We don't even count it unless it meets some of this criteria. So-he is having GTC's (especially at night) that we are not adding to the tally, because they are less than a minute and he doesn't need oxygen or meds. However, we still have to go through the pain of having our little boy scream in terror, clutch his face and shake all over. The thing that sucks (pardon my language) is that we can't do a dang thing about it. All we can do is hold him and let him know that we are there for him; and then not be able to fall asleep for a long time. He usually goes right back to sleep, me not so much. This is happening on average 6 times a night. Saturday, it was off and on all. night. long. He is occasionally having complex partials right now that we are calling "major", but not as often as in the past. They are almost always generalizing, so they are still being classified as GTC's.
Cole is still having plenty of myoclonics and other small seizures, lasting only seconds. Hand tremors, eye flutters, micro muscle spasms, foot drops, little jerking motions. Occasionally I catch absence. If I had to ballpark guess, I would say small seizure average is around 700-1,000 a day. I don't count (or I would be running around all day making tick marks into a notebook). Some days are okay, some days are horrible and it looks like he has been eating Mexican Jumping Bean larva. We also know that he is having a lot of myo's in his sleep, some that are not even noticeable unless he is hooked up to an EEG.
So, what do we do now? We have tried more AEDs (anti-epileptic drugs), less AEDs, dog meds, antibiotics, I guess that it is time for blood pressure meds. For the record Cole has been on: Phenobarbitol, Levetiracetam, the Ketogenic Diet, Clonazepam, Depakote, Topamax, Potassium Bromide, Clobazam and now Verapamil. Plus a bunch of stuff that is considered "alternative" or "adjunct" or "supplemental". That is a lot of meds and treatments for a kid who is not even 5 yet (hooray for a birthday this weekend)! Verapamil is looking like it is going to be added to the list of failed meds.
Basically I guess it all boils down to the fact that our life is an emergency right now. If I seem tired, distant, on edge, depressed, silly, don't make any sense, or act down right crazy...forgive me. I am working on little to no sleep and huge spikes of adrenaline then the crash. Sometimes I can't even recover before it is time again for life and death situations. Oxygen saturation at 14% is a true emergency. Just because we have not been hospitalized during all of this doesn't mean that it isn't serious. Watching your child struggle and suffer is one of the hardest things in the world to witness. Feeling helpless is right up there. We have basically every thing the paramedics have to offer us right here-portable suction, oxygen, rescue meds, pulse oximeter, experience. So in between mourning the Mom I Would Have Been (love this article) and keeping Cole alive I have been finding time for a little bit of yoga (hello, Sadie Nardini on YouTube!), paying bills, having a good/decent attitude, driving to therapy 5 times a week, occasionally making dinner, having spontaneous dance parties, finding time to snuggle with my boy and appreciate every day that he is here. It is pretty rough around here, but he is the reason that I get out of bed every day. He continues to laugh, entertain me, get into trouble and be the cutest little boy on the block. All he cares about is making a gigantic list for his birthday.
Top wishes include:
Building a bowling alley in the basement..."With a sweeper mom, a real bowling alley."
Ping Pong Table
Ride On Excavator
Tuba
A real pirate sword
Indoor swimming pool
Saxaphone
Geezo, Cole! Expensive taste, big dreams. I wish that I could grant them all, except for maybe that real sword. Right now, my biggest dream is for me to actually be able to count the number of seizures every day. Maybe even get to the point where we have a day or two completely, totally seizure free. Hey, if Cole thinks we can build a regulation bowling alley in our house, I can dream about a day when I can see my little boy get to act and feel like a little boy.
We had a Christmas Miracle, Part II; but not until we went through our personal version of hell. December proved to be very trying.
The Rocephin shots brought some relief. Cole was still struggling up to the day that we left for our vacation. Then he had 5 glorious days. There was still plenty of myo's and the dreadful nocturnal tonic clonics, but no day time major seizures! Christmas was not marred by the beast, like it usually is. Yes, there was still plenty of stress and waiting for the other shoe to drop and behavioral issues and myoclonics and, and, and....but we recognized that we were witnessing a miracle. A 12 hour journey, including incredible bladder control by Slugger, was completed without incident and there was time with family and loads and loads of presents! The antibiotics did what we thought they might. Gave him a little break in the cycle and at just the right time. We are so grateful.
The daily tonic clonics came back while we were gone. Then right before we left things settled down again, making us happy but confused. Even with picking up a cough from traveling, he had an even longer break, 8 days-which has not happened in over a year. Then things picked up fast and furious.
Re-cap on the last few months:
September-19 GTC's
October-17 GTC's
November-24 GTC's
December-40 GTC's
January to date-18 GTC's
So what exactly do these numbers mean? It really doesn't seem like they are that high...well, except for that 40. That number reflects only major seizures. What is major?
For us, right now, major seizures include most or all of the following:
Loss/altered state of consciousness
Full body convulsions
Drop in oxygen saturation
Need for rescue medications
Lasting over 1 minute
Post Ictal period that includes slowing of speech, sleeping, or Todd's Paralysis
Loss of bowel or bladder function
Post Ictal Blindness
A pretty big list! This means that Cole is still having plenty of seizures that we don't deem "major" right now. We don't even count it unless it meets some of this criteria. So-he is having GTC's (especially at night) that we are not adding to the tally, because they are less than a minute and he doesn't need oxygen or meds. However, we still have to go through the pain of having our little boy scream in terror, clutch his face and shake all over. The thing that sucks (pardon my language) is that we can't do a dang thing about it. All we can do is hold him and let him know that we are there for him; and then not be able to fall asleep for a long time. He usually goes right back to sleep, me not so much. This is happening on average 6 times a night. Saturday, it was off and on all. night. long. He is occasionally having complex partials right now that we are calling "major", but not as often as in the past. They are almost always generalizing, so they are still being classified as GTC's.
Cole is still having plenty of myoclonics and other small seizures, lasting only seconds. Hand tremors, eye flutters, micro muscle spasms, foot drops, little jerking motions. Occasionally I catch absence. If I had to ballpark guess, I would say small seizure average is around 700-1,000 a day. I don't count (or I would be running around all day making tick marks into a notebook). Some days are okay, some days are horrible and it looks like he has been eating Mexican Jumping Bean larva. We also know that he is having a lot of myo's in his sleep, some that are not even noticeable unless he is hooked up to an EEG.
So, what do we do now? We have tried more AEDs (anti-epileptic drugs), less AEDs, dog meds, antibiotics, I guess that it is time for blood pressure meds. For the record Cole has been on: Phenobarbitol, Levetiracetam, the Ketogenic Diet, Clonazepam, Depakote, Topamax, Potassium Bromide, Clobazam and now Verapamil. Plus a bunch of stuff that is considered "alternative" or "adjunct" or "supplemental". That is a lot of meds and treatments for a kid who is not even 5 yet (hooray for a birthday this weekend)! Verapamil is looking like it is going to be added to the list of failed meds.
Basically I guess it all boils down to the fact that our life is an emergency right now. If I seem tired, distant, on edge, depressed, silly, don't make any sense, or act down right crazy...forgive me. I am working on little to no sleep and huge spikes of adrenaline then the crash. Sometimes I can't even recover before it is time again for life and death situations. Oxygen saturation at 14% is a true emergency. Just because we have not been hospitalized during all of this doesn't mean that it isn't serious. Watching your child struggle and suffer is one of the hardest things in the world to witness. Feeling helpless is right up there. We have basically every thing the paramedics have to offer us right here-portable suction, oxygen, rescue meds, pulse oximeter, experience. So in between mourning the Mom I Would Have Been (love this article) and keeping Cole alive I have been finding time for a little bit of yoga (hello, Sadie Nardini on YouTube!), paying bills, having a good/decent attitude, driving to therapy 5 times a week, occasionally making dinner, having spontaneous dance parties, finding time to snuggle with my boy and appreciate every day that he is here. It is pretty rough around here, but he is the reason that I get out of bed every day. He continues to laugh, entertain me, get into trouble and be the cutest little boy on the block. All he cares about is making a gigantic list for his birthday.
Top wishes include:
Building a bowling alley in the basement..."With a sweeper mom, a real bowling alley."
Ping Pong Table
Ride On Excavator
Tuba
A real pirate sword
Indoor swimming pool
Saxaphone
Geezo, Cole! Expensive taste, big dreams. I wish that I could grant them all, except for maybe that real sword. Right now, my biggest dream is for me to actually be able to count the number of seizures every day. Maybe even get to the point where we have a day or two completely, totally seizure free. Hey, if Cole thinks we can build a regulation bowling alley in our house, I can dream about a day when I can see my little boy get to act and feel like a little boy.
Thursday, December 20, 2012
The List
In the last few weeks Cole has had a downward
spiral. For those who have been asking and have Dravet kiddos of their own, here is the list of things that we have tried and the rundown on what has
been happening. This isn’t even the half
of it, but for record keeping purposes I will hit the highlights.
October-Cole starts seizing more often. At this point we have
practically stopped using benzos and rescue meds in general. He has once again become immune to them and
we fear withdrawal symptoms. Also, in
prep for starting Onfi. Only used rescue
meds 3 times all month. We go to Camp For Courageous Kids. I still need to write about that. It was wonderful! Had our first 3
Tonic Clonics in one day. We stopped
Potassium Bromide in late August and the month of getting it out of his system
has ended. Start Onfi. Largest break in between major seizures was 4
days. Every seizure looks
different. Different types, different
times, different lengths. There is no
regularity or ability to predict what is coming next. This has kind of been the theme of Dravet,
but this year has just been mind blowing.
It makes Sluggers job extremely hard and training new nurses difficult. 17 major seizures recorded.
We prepare for Superstorm Sandy.
End up evacuating anyway. We were
gone for 5 days. Drive 14 hours
home. The next day, Daddy leaves for NYC
to help with the aftermath. He is gone
for 2 weeks.
November-Get a small break when we increase Onfi.
Have 7 days with no major seizures.
Then things get hairy. Daddy is
still gone. Have a nurse quit and so
only have coverage 3 days a week. Start Anat Baniel Method Therapy. It is a very slow process with Cole and his sensory issues. He doesn't like strangers to touch him.
Cole
starts having at least 2 tonic clonics every day. Nothing is stopping them. Onfi, double Keppra, and rescue meds are
hardly working when we use them. Still using all rescue meds and double Keppra sparingly. Cole starts having major
regressions. Reverts back to oral phase, acts a lot like an infant and starts sticking every thing in his mouth. Has some potty accidents. Loses some of the songs he knew before.
Brian comes home and the next day we leave for Miami. Read about our Florida adventure HERE. 24 major seizures recorded, not counting nocturnal.
December-We drop the rest of the Onfi.
Cole finishes his amoxicillin on the 1st. We get ready to start Verapamil. Want to go back to school and get settled
into routine before we start something new after all of the travel. Silly us.
The 2nd reintroduces daytime TCs. It is so weird how he has a honeymoon every
time he is on high dose antibiotics. We
start a love/hate relationship with 911.
We call them at least once a week all month. If you know us at all, you know that it is
totally abnormal for us to get to our breaking point so often. Cole continues to live his legacy and stops
seizing once we call, or once the paramedics show up. Whether we wait for 29 minutes or 8 minutes,
the story is the same. It does not work
if we pretend. He knows J We have to be serious and dial for real. We start the Verapamil. Cole catches a cold the first day he goes
back to school and shares the love with Mom and his main nurse. We stop the Verapamil, after one whole
day! Still not sure if it works for him,
but we couldn’t know while he was sick.
Also didn’t want to take the chance of a major drop in blood pressure
when he was ill. We take him to the doc,
strep negative, flu negative and throat culture is negative. He loses his voice
and looks horrible, but still has some stamina.
The entire month the longest break he has from tonic clonics is 2 days,
and that only happened once. The myo’s
abound. The TCs ramp up from 2 a day to
3 a day. Every single day. Cole
regresses further and does strange infant-like behavior like chewing on his
feet and licking the floor. We try
double doses of Keppra, since that helped on the airplane in Florida, kind of. It helps maybe 1 out of three tries. Mom gets super sick and wants to curl up in a
ball and hide. We don’t have nurses, so this
makes things interesting. Cole, per his
M.O. continues to be sick, for a long time.
At this point, Cole has been de-sating to the 30s and 40s during major seizures
and will hover for minutes even with 5 Liters of oxygen. He is congested and occasionally coughs, but
it is just a virus, right? We throw around
the idea of possible pneumonia. I am talking
to the pediatrician daily.
It doesn’t matter what we do. If
we use rescue meds, the seizure doesn’t stop.
When we used to administer medication like Diastat or Versed, at least it
helped to prevent future seizures that day and would give him some sort of a
break. Cole is seizing again within a
few hours, even with Diastat. Has 26
major tonic clonics (this is not including the short nocturnal ones) in 12
days. During all of this we call Dr
Miller. He suggests that we start
Bromide again for a short-term solution.
We know that he broke out in a rash about 2 ½ weeks in to it
before. So, back to dog medication we
go. Immediately we notice that Cole’s
speech declines. By the second day, he
is slurring his words. By the third day,
he is drooling even without seizures. We are just looking for a short-term
solution. Something to just break the
cycle of seizures. We know that Cole
can’t handle long term Potassium Bromide.
We see our son slipping away from us.
Call Dr Miller again. Don’t want
to wade into any more old medications.
We could start increased eye fluttering, maybe even those evil drop
seizures could come back?! Things are
already bad here, why would we want to possibly make it worse? So, we get into “illogical and completely
bizarre” territory. Discuss things like
IVIG or prednisone. Heaven help us, ACTH
comes up. Also high doses of
antibiotics…to control seizures. Illogical. Remember how Cole had a honeymoon with the
Amoxicillin? As bizarre as it seems,
some kids with Dravet have decreased seizures on high doses of
antibiotics. There are side effects, but
it is less risk than steroids. So-we
decided to start 3 days of 1000mg Rocephin shots, that day. Cole gets 6 huge shots in the behind. Fun...not really. Dr Miller wants to keep up the Bromide for a
week and we talk about steroids as the next approach. By now, we are on the fourth day of Potassium
Bromide; Cole can barely speak at all.
He is drooling like an infant and does not want to eat. His gait is slowing. He is grabbing his face before a seizure, going tonic and then scratching himself. He looks like he has been in a fight with a rabid raccoon. Perfect for those family pictures next week. Brian and I decide to take him off Potassium
Bromide. This entire time we are
vacillating between deciding to go or not to go home for Christmas (cross
country flight). The next morning, Cole
wakes up shaking like I have not seen him for a long time. The tremoring and myoclonics are so intense
that his whole body is involved. Almost
into tonic clonic territory. We wonder
if it is due to this, due to that. Always
having to play detective. We give him a
double dose of Keppra and 5 mg of diazepam.
Decide to continue with the antibiotic shots. I say, "We are not going home". Cole improves throughout the day and regains
some speech. He still sounds like a
drunken sailor and cannot say the ABCs, but hey…he is talking! We’ll take it!!!
The entire day of the 2nd antibiotic shot, he does not have a
tonic clonic. We are still holding our
breath, but so grateful for the small break for our child. His color starts to come back; he doesn’t
look like death warmed over. Day 3 of
the antibiotic (today), at the time of publishing, he has had two big seizures. Better than 3! So-if you really feel like nothing is working and your child just keeps
clustering no matter what you do, go out
on a bizarre limb and try high doses of antibiotics. Or maybe not. It is not a long-term solution, but worth a shot. I think. 31 major seizures recorded, not counting nocturnal, and we have 11 days left.
I still don’t know if we are going to go home
for Christmas. But really, what if this
is his last Christmas? Won’t we regret
staying just because we were scared? Our
life the last few years has taught us to live to the fullest. So we will probably put him in a drug-induced
stupor, board that plane and hang on for dear life. Who needs performance enhancing drugs, bungee
jumping, marathon running and rock and roll?
Just get a child with Dravet Syndrome and you can have all of the
adrenaline rushes you could ever ask for! J
Wednesday, December 19, 2012
Our Florida Adventures
We had our 6 month visit with Dr Miller scheduled for November. We decided to move it from the regular clinic
day and combine it with our Thanksgiving break.
Two birds with one stone!
Before we even got to the hospital, we had all sorts of drama. Cole had been having very frequent tonic clonics at this point and we were nervous (as always) about flying. Somehow taking care of a seizure at 30,000 feet isn't so easy. Landing the plane, also not so easy. We gave him a double dose of Keppra per Dr Miller and sent up a hundred prayers that he could make it on the flight. God has a sense of humor! Cole made the flight, but had a severe seizure at baggage claim. We were quite the sight. Urine streaming down my legs (Cole's), holding a seizing child, Brian trying to grab our bags off of the carousel, Slugger wondering what the heck was going on. Hey-he didn't have one ON the plane! The next day he was so bad that we considered calling 911 and going to the local hospital. However, we totally knew that if they admitted us, we would not be discharged in time to make our appointment in Miami the next day. We didn't call, Cole made it through the night. We got up the next day and headed 3 hours south to Miami Childrens Hospital.
Before we even got to the hospital, we had all sorts of drama. Cole had been having very frequent tonic clonics at this point and we were nervous (as always) about flying. Somehow taking care of a seizure at 30,000 feet isn't so easy. Landing the plane, also not so easy. We gave him a double dose of Keppra per Dr Miller and sent up a hundred prayers that he could make it on the flight. God has a sense of humor! Cole made the flight, but had a severe seizure at baggage claim. We were quite the sight. Urine streaming down my legs (Cole's), holding a seizing child, Brian trying to grab our bags off of the carousel, Slugger wondering what the heck was going on. Hey-he didn't have one ON the plane! The next day he was so bad that we considered calling 911 and going to the local hospital. However, we totally knew that if they admitted us, we would not be discharged in time to make our appointment in Miami the next day. We didn't call, Cole made it through the night. We got up the next day and headed 3 hours south to Miami Childrens Hospital.
While we were there, Cole had his first sleep study. Results show there is no major change. He is still seizing throughout the
night. No sleep apnea though,
hooray! We discussed with Dr Miller the
increased frequency in tonic clonics and myoclonics. Cole had not been sick lately and we felt
like we had a baseline established, as fluid as it was. Bottom line was, we knew that the Onfi wasn’t
working.
Dr Miller, as great as he is, basically tells us during our appointment that we are running out
of options. Which we kind of already
knew, but it is hard when one of the best doctors in the country for what your
child has, tells you that he can’t help you.
Cole has tried 7 or 8 meds at this point and has failed them all except
Keppra-which we really don’t think is working very well anyway. So we decide to get off of Onfi. Next stop, Verapamil (a blood pressure med of
all things). You know we are all about
Plan A, B, and C…so after that, it is time for Stiripentol or revisiting old
meds. We discuss alternatives such as
VNS, medical marijuana (which is illegal where we live), IVIG, steroids such as
ACTH or prednisone. He wants to see us in 3 months. Okay, now things are really getting real. On the day we visit
Dr Miller, Cole has three tonic clonics.
He also seems really sensitive to light.
Much more than usual and is hiding his head under a blanket. I will say again, seizures in the car, on the freeway are definitely ranked in the worst top 5 places to have your child seizing.
The next day all hell breaks loose.
Cole has 4 tonic clonics and was basically in NCSE (non convulsive
status epilepticus) the entire day…we just didn’t know it. He is inconsolable and we can tell that he is
in terrible pain. He is actually
complaining of eye pain. For a kid who
has run around on a broken foot, twice, this is huge. The light sensitivity is very intense and he
wants his special glasses on even indoors.
We try a double dose of Keppra, Motrin, Tylenol…nothing is working. We contact Dr Miller and tell him we suspect
a migraine. He tells us to give a combo
of Benadryl and Aleeve. By tonic clonic
#3 we are getting anxious. We give
Versed, it doesn’t help. Cole can’t hold
up his head, is drooling profusely and can barely speak. Yet, he doesn’t want to be left out. The boy is adamant that he is a part of the
holiday party and refuses to sit out in the car with me. So I take him inside and he sits on our laps,
wrapped in a blanket as we eat and looks the definition of disabled, which is
rare for him. But he is there and he
breaks out a crooked smile; such the definition of resilience. At TC #4, it is evening and we call the
on-call neuro, who told us she was extremely nervous and wanted us to come
in. It is never reassuring when a
neurologist admits to you that they are nervous! We explained that we were 3 hours away and
would have to be Life Flighted, which could take over 5 hours from start to
finish since we had to go through the local ambulance, hospital, etc. She agreed that it could take too long. Getting through to a new hospital that
doesn’t know us and doesn’t know Dravet takes forever. By the time they believed us enough to call
Miami and get the go-ahead, it could be hours.
Remember he isn’t actively seizing at this point so to a regular doc, he
would look fine. She suggested that we
actually get in the car and drive down.
At the end of the conversation she gives us instructions to give him
Diastat and a double dose of Keppra. If
he has another, we are to call AirMed and get down to Miami. No matter how inconvenient it is. The Diastat in combo with the other meds
settles Cole’s brain to the point he can sleep, just through the night. It also tips us (and Dr Miller) off to that
his supposed “migraine” was actually bizarre seizure activity. Since pain relievers did nothing for it and a
benzo did, it was probably seizures. Weirder things have happened with Cole. Add it to the list of "rare". Most
regular people would sleep for a day or two with all of those medications in
their system, not our Mini Hulk! He only
got a 7 hour nap. We truly experienced a
miracle though and made it through the night. I
really didn’t want our first helicopter ride to be in a different state and
take a couple of hours. Thanks divine
intervention! J
Those meds carried over and he did not have a major seizure the next
day. However, we got a new surprise at
night. Cole started having major
nocturnal seizures. Tonic clonics that
last from 30 seconds to a minute. He
will sit up in the middle of the night, grab his face with his shaking arms and
have full body convulsions. We can only
hold him and tell him that we will be there for him. They are too short to drop his oxygen and don’t
need meds. However, it gets my brain
kicked in to overdrive and I just lie there awake, waiting for the next one. One night he had 9.
The next day, I had my mommy instinct telling me he might have an ear
infection. Mind you, there was no
complaints of pain, no major fever, no pulling of the ears, no lethargy, just a
hunch. We took him in and BAM, both ears
were infected; they started him on Amoxicillin.
The rest of our Thanksgiving break was full of nocturnal seizures, but he
had a break with daytime ones.
I was so ready to go home. I
wanted our routine back. There were
rumors flying around that Brian was going to be sent back to New York which stuck fear in my heart but I knew that I had a back up plan for support and we could really use the money. The hurricane, him being gone, Miami, the holiday and all of these
seizures were getting to me. So, we were
grateful for the break from daytime chaos. Well, at least where seizures were concerned! We had a great
time with our cousins and other family members that we don’t get to see very
often. Plus, it was 80 degrees the day
we left! Is 32 too young to become a
snowbird? J
Monday, December 3, 2012
Evacuate
Hey there.... *awkward silence*
It's been a while. How are you?
We. are. alive.
If you live in the United States, you probably heard of Frakenstorm otherwise known as Hurricane Sandy. At one point it was headed straight for us. So, we readied our house. Our emergency preparedness skills kicked in, full force. We took everything out of the basement. Moved all of our pictures and precious possessions to the top floor. Pulled all of our furniture away from the walls. Put towels in all of the windows. Got gas for the generator, bought water and food. Stocked up on medication. In the end, even though we were super prepared with heaters, batteries galore, flashlights, blankets and enough food to feed a large family for weeks, we still ended up evacuating. It was the best thing for us as a family, especially for Cole.
Our house was fine and we ended up spending the time in warmer weather. Some would say, "Why?". Others knew exactly what we were thinking when we packed up and left in a matter of hours. Barometric pressure, possibilities of no power, no access to the hospital, etc. Even if there was something as simple as a tree blocking our road, it meant that the ambulance couldn't get to our house if we needed it. We didn't know what would happen, but the majority of our life is hanging in the balance of the "cone of uncertainty" to use a phrase from the weather man. We didn't need any more uncertainty. Our life is an emergency and we did not need to add to it. So, we left for a little while.
I feel like I have kind of evacuated the blog. Even social media. No more Instagram, very limited looking at Facebook. It was the best thing to do in the moment.
I really want to catch you all up on what has been going on around here. Honestly, it is overwhelming. Failing multiple medications, stress with work, new therapies, school stuff, nursing stuff, family stuff, and more just stuff. Cole is having more seizures than ever...and I mean, ever. I kind of evacuated my life too. This little semi-reseblance to a normal existence that I have been carving out for the last year has kind of been put in the closet. Since our nursing is extremely limited I have gone back to full time caregiver 24/7. The boy is with me everywhere. He has also been missing lots of school.
Hurricane Sandy also took our daddy's attention for a month. For a week he was constantly on his phone and computer and then he was in NYC for two solid weeks. Cole was really struggling during all of this and it could have been a really dark time. In the end, it showed me that I am stronger than I thought. I always knew I was good under pressure, but I really reached my breaking point. That is when people stepped in, who owed me nothing by the way, and took a little piece of the burden. We are not out of the woods yet. We almost had to Life Flight Cole and my little calendar book is full of days upon days of multiple major seizures per day. We went to Miami and hopefully have a new plan (or two), but we are kind of running out of options.
Stuff like the blog, e-mail, Facebook and Instagram have been so far in the back of my mind that it seems like another life completely. I still miss you and want to catch up on our high highs and our low lows, if only for record keeping purposes. In between all of the trips to the hospital and the days of not showering because you can't leave Cole for a second, we have had some funny, good times.
Stuff like Cole going to the beach. Playing with cousins we have not seen in a long time. Cole being obsessed with excavators and wanting to call Santa on the phone. We have always known that the only thing we can control is our attitude. So-we had an adjustment and are going to make this holiday season the best that it can be. Yep, our life is still an emergency; but we will show up at the ER with antlers and tacky Christmas sweaters!
Happy Holidays,
NIK
P.S. We got nominated for an award. Kind of fun :)
It's been a while. How are you?
We. are. alive.
If you live in the United States, you probably heard of Frakenstorm otherwise known as Hurricane Sandy. At one point it was headed straight for us. So, we readied our house. Our emergency preparedness skills kicked in, full force. We took everything out of the basement. Moved all of our pictures and precious possessions to the top floor. Pulled all of our furniture away from the walls. Put towels in all of the windows. Got gas for the generator, bought water and food. Stocked up on medication. In the end, even though we were super prepared with heaters, batteries galore, flashlights, blankets and enough food to feed a large family for weeks, we still ended up evacuating. It was the best thing for us as a family, especially for Cole.
Our house was fine and we ended up spending the time in warmer weather. Some would say, "Why?". Others knew exactly what we were thinking when we packed up and left in a matter of hours. Barometric pressure, possibilities of no power, no access to the hospital, etc. Even if there was something as simple as a tree blocking our road, it meant that the ambulance couldn't get to our house if we needed it. We didn't know what would happen, but the majority of our life is hanging in the balance of the "cone of uncertainty" to use a phrase from the weather man. We didn't need any more uncertainty. Our life is an emergency and we did not need to add to it. So, we left for a little while.
I feel like I have kind of evacuated the blog. Even social media. No more Instagram, very limited looking at Facebook. It was the best thing to do in the moment.
I really want to catch you all up on what has been going on around here. Honestly, it is overwhelming. Failing multiple medications, stress with work, new therapies, school stuff, nursing stuff, family stuff, and more just stuff. Cole is having more seizures than ever...and I mean, ever. I kind of evacuated my life too. This little semi-reseblance to a normal existence that I have been carving out for the last year has kind of been put in the closet. Since our nursing is extremely limited I have gone back to full time caregiver 24/7. The boy is with me everywhere. He has also been missing lots of school.
Hurricane Sandy also took our daddy's attention for a month. For a week he was constantly on his phone and computer and then he was in NYC for two solid weeks. Cole was really struggling during all of this and it could have been a really dark time. In the end, it showed me that I am stronger than I thought. I always knew I was good under pressure, but I really reached my breaking point. That is when people stepped in, who owed me nothing by the way, and took a little piece of the burden. We are not out of the woods yet. We almost had to Life Flight Cole and my little calendar book is full of days upon days of multiple major seizures per day. We went to Miami and hopefully have a new plan (or two), but we are kind of running out of options.
Stuff like the blog, e-mail, Facebook and Instagram have been so far in the back of my mind that it seems like another life completely. I still miss you and want to catch up on our high highs and our low lows, if only for record keeping purposes. In between all of the trips to the hospital and the days of not showering because you can't leave Cole for a second, we have had some funny, good times.
Stuff like Cole going to the beach. Playing with cousins we have not seen in a long time. Cole being obsessed with excavators and wanting to call Santa on the phone. We have always known that the only thing we can control is our attitude. So-we had an adjustment and are going to make this holiday season the best that it can be. Yep, our life is still an emergency; but we will show up at the ER with antlers and tacky Christmas sweaters!
Happy Holidays,
NIK
P.S. We got nominated for an award. Kind of fun :)
Tuesday, September 18, 2012
All Over The Place
Hey. We have kind of been all over the place the last few months. High highs, low lows.
Let's relate to the playlist. You know about the Soundtrack For Life by now.
This morning I put the: Faith Hill, Savage Garden, Bellydance, Sade, Jack Johnson, Best of the 80s, Mormon Tabernacle Choir, Usher, Dierks Bentley, Josh Groban, Mariachi, James Taylor, Adele, 90s Country, and Michael Bolton Pandora Stations on shuffle. Confused?
A little bit of everything. (and this is not even half of the variety in my library)
Smash all of those artists into one playlist and you get something that is similar to our universe the last little while. Kind of crazy, but it works.
I promise that I have sat down with intent to update, but it is one thing after another around here and I have gotten distracted more than once.
So, Reader's Digest...we are alive, we will survive and I need a nap :)
Let's relate to the playlist. You know about the Soundtrack For Life by now.
This morning I put the: Faith Hill, Savage Garden, Bellydance, Sade, Jack Johnson, Best of the 80s, Mormon Tabernacle Choir, Usher, Dierks Bentley, Josh Groban, Mariachi, James Taylor, Adele, 90s Country, and Michael Bolton Pandora Stations on shuffle. Confused?
A little bit of everything. (and this is not even half of the variety in my library)
Smash all of those artists into one playlist and you get something that is similar to our universe the last little while. Kind of crazy, but it works.
I promise that I have sat down with intent to update, but it is one thing after another around here and I have gotten distracted more than once.
So, Reader's Digest...we are alive, we will survive and I need a nap :)
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