It was bound to happen.
Gio got a hold of food he cannot eat...a piece or two of Benicio's pancake and some cheerios he stole from Benicio. It wasn't a lot, but enough to ruin his Christmas.
His Christmas Eve was awesome...running around, wailing at church to annoy the other people. Bed early.
He woke up cheery and ready to go and then promptly had a seizure...and it was huge; no breathing for nearly a minute, arms and legs extremely tight...then, when done, hard twitching for about 5 minutes...he was out of it.
We were told this that might happen should he eat foods he can't...even small amounts.
It's just hard to do that with a 5-year-old who seems to be starving and a 2-year-old who walks around eating whatever he wants.
Saturday, December 25, 2010
Tuesday, December 21, 2010
I Can't Believe I Wanted This Back!
My friend Steve asked me a few weeks ago a really poignant question about Gio.
"In the Channel 3 story from May, Gio was running around in it and loud and happy...is he like that anymore?"
The answer was no. Since that video was shot, Gio had declined so significantly, I actually missed the constant moving and wailing and grabbing of things he shouldn't grab.
Here's the video Steve was talking about:
Why Gio's Garden
Now...here's a picture of Gio from October - 2 months prior to the diet.
He had to be in his wheelchair and was just about to have a seizure...you can see the look in his eyes.
Since the story in May, Gio had stopped walking because when he did, he would usually collapse. He didn't have the strength to stand and was losing muscle mass in his legs.
What makes this so important now is that I came home from Boston Monday to the Gio from May. He was running around the house, not stumbling. He was engaged, not distant. He was back.
I never thought I would WANT to have to tell him to stop grabbing things off counters.
"In the Channel 3 story from May, Gio was running around in it and loud and happy...is he like that anymore?"
The answer was no. Since that video was shot, Gio had declined so significantly, I actually missed the constant moving and wailing and grabbing of things he shouldn't grab.
Here's the video Steve was talking about:
Why Gio's Garden
Now...here's a picture of Gio from October - 2 months prior to the diet.
Since the story in May, Gio had stopped walking because when he did, he would usually collapse. He didn't have the strength to stand and was losing muscle mass in his legs.
What makes this so important now is that I came home from Boston Monday to the Gio from May. He was running around the house, not stumbling. He was engaged, not distant. He was back.
I never thought I would WANT to have to tell him to stop grabbing things off counters.
Friday, December 17, 2010
Some Set Backs, but Great Promise
Immediately after the diet started, Gio either got a cold or the diet made him sick. We really aren't sure, but he and mom spent a day in the hospital after Gio started vomiting overnight. This was about 5 days after the diet started.
We were told this could happen and Charlotte was prepared. I was out of town but rushed home and when they released him from the hospital, he was fine...albeit very tired and somewhat lethargic. We have to watch his glucose levels very closely and his acid levels. Everyday, twice a day, we need to mix baking soda into water for him to drink.
What's been interesting so far is that Gio is apparently always thirsty. He chugs down water like it's going out of style...which is great because he needs about 50 ounces a day now!
We did find flavored water that has no sugar, no nothing and he is loving it!
So...what have we noticed now after 2 weeks?
Well...Gio is finally "back" with us. After more than a year of watching him decline mentally as well as physically, Gio has returned. He not only stands up and stands still, he is walking straighter and with purpose. He doesn't look as "drunk" as he used to.
His eyes are brighter and he responds to his name. He is back to pointing to parts of his body. He is actively taking part in his autism therapy again. He is no longer needing to sit in a chair with straps to hold him up straight. He walked up the stairs on his own the other day.
He is verbalizing by barking and wailing. While that used to bother me to know end, I am overjoyed to hear it. When your child goes silent for more than a year and suddenly starts to communicate again, however they communicate, the joy is overwhelming.
There is so much more and we see more everyday.
We are still seeing the nightly tonic seizures...and every two days he has one or two while wide awake. But, he isn't post-ictal (sp?) for very long anymore...he snaps out of it in a minute rather than an hour.
I wouldn't expect those to go away that quickly...again, he has only been on this diet for 2 weeks! There are nights where he has 4 or five tonic seizures as well.
BUT, the small constant seizures - 50 to 70 a day...nearly all day long, ARE GONE!
If this isn't a Christmas miracle...I'm not sure what is.
We were told this could happen and Charlotte was prepared. I was out of town but rushed home and when they released him from the hospital, he was fine...albeit very tired and somewhat lethargic. We have to watch his glucose levels very closely and his acid levels. Everyday, twice a day, we need to mix baking soda into water for him to drink.
What's been interesting so far is that Gio is apparently always thirsty. He chugs down water like it's going out of style...which is great because he needs about 50 ounces a day now!
We did find flavored water that has no sugar, no nothing and he is loving it!
So...what have we noticed now after 2 weeks?
Well...Gio is finally "back" with us. After more than a year of watching him decline mentally as well as physically, Gio has returned. He not only stands up and stands still, he is walking straighter and with purpose. He doesn't look as "drunk" as he used to.
His eyes are brighter and he responds to his name. He is back to pointing to parts of his body. He is actively taking part in his autism therapy again. He is no longer needing to sit in a chair with straps to hold him up straight. He walked up the stairs on his own the other day.
He is verbalizing by barking and wailing. While that used to bother me to know end, I am overjoyed to hear it. When your child goes silent for more than a year and suddenly starts to communicate again, however they communicate, the joy is overwhelming.
There is so much more and we see more everyday.
We are still seeing the nightly tonic seizures...and every two days he has one or two while wide awake. But, he isn't post-ictal (sp?) for very long anymore...he snaps out of it in a minute rather than an hour.
I wouldn't expect those to go away that quickly...again, he has only been on this diet for 2 weeks! There are nights where he has 4 or five tonic seizures as well.
BUT, the small constant seizures - 50 to 70 a day...nearly all day long, ARE GONE!
If this isn't a Christmas miracle...I'm not sure what is.
Sunday, December 12, 2010
Starting the Diet
Charlotte and I spent 3 days with Gio in the hospital - November 29-December 1. I couldn't understand at first why we needed to stay in the hospital when all we were doing was changing food, but I quickly figured out why.
A lot of children get sick when immediately stopping their regular diets filled with carbs and sugars. Gio had been on a gluten and casein free diet for more than a year now, so I wasn't too concerned. We got to the hospital and even before we got into the room, the dietician met us with a formula - KetoCal. It was a milk like drink mixed with water. For the first day, this was all he would get. Luckily we had given him pasta the night before and I fed him a huge breakfast of eggs and bacon before we got there. We figured he should enjoy his "last meals".
Gio immediately drank the formula - actually, sucked it down. Even at 5, he still uses a bottle. It's easier for him to grasp and he can't really spill. Since he doesn't have the greatest motor skills, we haven't taken the bottle from him. Now, even after drinking nearly 11 ounces of that drink, he had to drink another 300 mL of water - another 10 ounces! Since he's not potty trained, you can imagine what has started now....lots of clothes washing. And, he HAS TO drink 300 mL of water after EVERY meal. The G-Tube now wasn't looking so bad. We can't force him to drink, but we can get all the liquids into him via the tube! So, the first day of the diet was liquid overload. He didn't mind and it went well.
Day 2 was learning about the scale - everything has to be measured out to the exact gram. So...we practiced and made our first meals for him - Breakfast, Lunch and Dinner...and a snack for bed, but that would consist of the KetoCal drink in a bottle to help him go to sleep. What he doesn't finish goes in through the tube. And, he has to eat the meals at around the same times everyday -
9AM breakfast and 300 mL of water
Noon Lunch and 300 mL of water
3PM - 250 mL of water
6PM - Dinner and 300 mL of water
7PM - Snack an 250 mL of water
The meals basically look like this:
50 grams Heavy Cream
10 Grams some fruit
20 grams some protein
20 grams oil or butter
What changes in grams depend on fat content and other ratios. But, what is consistent with every meal is the Heavy Cream - 50 grams...every meal.
The nurses were also checking his ketone levels...and by the second day, he had a small amount already! Everyone was pretty excited.
Here's some video of the 3rd meal Gio ate while we were still in the hospital.
In essence, small portions, lots of fat.
A lot of children get sick when immediately stopping their regular diets filled with carbs and sugars. Gio had been on a gluten and casein free diet for more than a year now, so I wasn't too concerned. We got to the hospital and even before we got into the room, the dietician met us with a formula - KetoCal. It was a milk like drink mixed with water. For the first day, this was all he would get. Luckily we had given him pasta the night before and I fed him a huge breakfast of eggs and bacon before we got there. We figured he should enjoy his "last meals".
Gio immediately drank the formula - actually, sucked it down. Even at 5, he still uses a bottle. It's easier for him to grasp and he can't really spill. Since he doesn't have the greatest motor skills, we haven't taken the bottle from him. Now, even after drinking nearly 11 ounces of that drink, he had to drink another 300 mL of water - another 10 ounces! Since he's not potty trained, you can imagine what has started now....lots of clothes washing. And, he HAS TO drink 300 mL of water after EVERY meal. The G-Tube now wasn't looking so bad. We can't force him to drink, but we can get all the liquids into him via the tube! So, the first day of the diet was liquid overload. He didn't mind and it went well.
Day 2 was learning about the scale - everything has to be measured out to the exact gram. So...we practiced and made our first meals for him - Breakfast, Lunch and Dinner...and a snack for bed, but that would consist of the KetoCal drink in a bottle to help him go to sleep. What he doesn't finish goes in through the tube. And, he has to eat the meals at around the same times everyday -
9AM breakfast and 300 mL of water
Noon Lunch and 300 mL of water
3PM - 250 mL of water
6PM - Dinner and 300 mL of water
7PM - Snack an 250 mL of water
The meals basically look like this:
50 grams Heavy Cream
10 Grams some fruit
20 grams some protein
20 grams oil or butter
What changes in grams depend on fat content and other ratios. But, what is consistent with every meal is the Heavy Cream - 50 grams...every meal.
The nurses were also checking his ketone levels...and by the second day, he had a small amount already! Everyone was pretty excited.
Here's some video of the 3rd meal Gio ate while we were still in the hospital.
In essence, small portions, lots of fat.
Saturday, December 11, 2010
Happy or Seizing?
This is a bit of a long video but the first part of it shows what appears to be a happy little boy. Gio might seem all smiles, but, in reality, he is having multiple seizures while sitting there. In fact, Gio is quite loopy in this video and when this happens we have to give him an extra dose of medicine, diazepam, to make him snap out of it and go to bed. If we didn't, he'd be seizing all night.
This was shot about three months ago...well before the diet and the surgery for the G-Tube. It also offers a glance at Gio's little brother, Benicio...the clown.
I wanted to show this to all of you because the videos I'll start putting up later will be Gio now...after we have started the diet...and it's very different....and very awesome.
Friday, December 10, 2010
Starting the Journey
I have decided to bring you all on this journey with Charlotte, Giovanni, Benicio and I. It will be a long, tough road but if it works, we will get our son back. This is the last and final option for us since we have tried anything and everything to end the seizures that are debilitating Gio. We can only hope this diet works.
It's called the Ketogenic Diet and when you first hear about it, you are left scratching your head. How can you trick the body into starvation but feed it so much fat and protein while nearly eliminating all carbs? The New York Times published a great article about this a few weeks ago. http://www.nytimes.com/2010/11/21/magazine/21Epilepsy-t.html
That will explain a lot to many of you and will help as you travel with us for the next three years - 3 years if the diet actually starts to work.
For anyone who doesn't know our story, I invite you to go to our website, http://www.giosgarden.org/ and read his story and more about the non-profit we created to help special needs children in our area. I will often mention Gio's Garden on these pages...but this will mostly about Gio's life on the diet and how we as a family are making it work.
I will be posting pictures and videos here of Gio as we progress and there will be a lot of thoughts and ramblings...that's how I work.
I can only hope that you will follow us on the journey. It's been one week and 3 days we've been on it and we are already seeing things happen.
But that will be for another post. For now...welcome!
It's called the Ketogenic Diet and when you first hear about it, you are left scratching your head. How can you trick the body into starvation but feed it so much fat and protein while nearly eliminating all carbs? The New York Times published a great article about this a few weeks ago. http://www.nytimes.com/2010/11/21/magazine/21Epilepsy-t.html
That will explain a lot to many of you and will help as you travel with us for the next three years - 3 years if the diet actually starts to work.
For anyone who doesn't know our story, I invite you to go to our website, http://www.giosgarden.org/ and read his story and more about the non-profit we created to help special needs children in our area. I will often mention Gio's Garden on these pages...but this will mostly about Gio's life on the diet and how we as a family are making it work.
I will be posting pictures and videos here of Gio as we progress and there will be a lot of thoughts and ramblings...that's how I work.
I can only hope that you will follow us on the journey. It's been one week and 3 days we've been on it and we are already seeing things happen.
But that will be for another post. For now...welcome!
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