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...
Tuesday, December 6, 2011
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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