Answers then Confusion then Nothing

As many of you know, we took Gio to the Mayo Clinic to see if we could get any more answers: why had the diet stopped working, why was he gaining so much weight, why had the seizures gotten worse? After fighting to get there then fighting on the way there with insurance and Mayo (who wanted $12,500 as a deposit for tests) we got there and spent a week in Rochester.
First things first...Rochester sucks it. Sorry people who call that home, but that place is a hole.
Regardless, the "Mayo Experience" was not that exciting. There's lots of glamour associated with Mayo, but...really...just another hospital. I guess if we had been the King of Jordan and had flown in on a private jet and gotten king treatment, things would've been different. But, we were a number and cash for a hospital.
The neurologist was fantastic and spent more than 2 hours with us and Gio and was genuinely interested in his case. She had ordered a battery of tests for which included an MRI and spinal tap and other things. We also met with a dietitian to discuss the diet and why it might have stopped working.
Gio has gained A LOT of weight. Frankly, he looks healthier now, but the diet is supposed to trick the body into thinking you are starving - calorie limitation with high fat. In 8 months, Gio has gained 20 pounds. That's a problem for the ketogenic diet.
What I didn't like about the dietitian...Gio had a seizure in front of her as she was preparing to leave and she flew out of there like a bat out of hell. I as thinking, "Lady...you are a dietitian trying to stop seizures...you should watch to see what happens to these kids!"
The last day, Gio had all the tests which required sedation from 8am till 1pm. This is where I was impressed: even before he was out of sedation, the neurologist called us back to her office later in the afternoon to discuss the MRI. Wow...no waiting!
In short, the MRI showed something wrong in the spot where Gio had surgery 5 years ago to destroy the cyst that was growing in his brain. It appeared to be a mass out of place where the amygdala should be. The doctor said she couldn't even see where the amygdala on that side of the brain was located. I brought up the fact that 3 years ago in a scan, the doctors at UW had seen this and decided that the mass was the amygdala pushed into the wrong location by the cyst and that they couldn't determine if removing it would even help with the seizures since his seizures were generalized and all were not starting from that part of the brain. (I know I'm getting technical here...but bear with me)
She disagreed with all the doctors at UW and said it was a hemartoma...well, folks, that's a tumor.
While benign, it's location could be the cause of the weight gain. The pressure could also be the cause of his seizures. But...she needed to see all the other MRI's done by UW since 2006 and needed to show this to all the neurologists at Mayo. But she was pretty confident. A week later, she called us back and told me on the phone that it was what's called a hypothallamic hemartoma. Go and read what it is...it's easier.
She believed removal was the best option. At this point, the UW doctors were clamoring to see the Mayo clinic MRI.
We got a call to come see our neurologist at UW Yesterday (Tuesday 9/20).
This is where everything went wrong.
Our neurologist here discussed the Mayo Clinic findings and said that there's certainly a 50/50 chance surgery would help Gio. But, all the neurologists and neurosurgeons at UW would need to get together and discuss these latest findings and decide. Charlotte and I started crying because it was happening again...brain surgery. Then, his nurse came in and handed a note which said our neurosurgeon was coming, please wait. Apprently, he had seen that we were on the schedule and wanted to talk to us.
About 5 minutes later, in comes our neurosurgeon in surgery garb...just out of surgery. We haven't seen him in years, but this man has followed Gio's case since day one, has been in my son's head and has been keeping track of all that happens with Gio. I had already decided that if Gio said surgery could help and this neurosurgeon would do it, we would do this again. He is an accomplished neurosurgeon, well respected in the entire country...a calm man who cared for our child as if Gio was his own.
I will never forget what happened next.
"The Mayo Clinic has done this to me before. We did a scan three years ago and this is the amygdala. It is not a hemartoma like they are suggesting. They are wrong. Let me show you." He goes to the computer and put Gio's first MRI up on the screen with the cyst in 2006 and the one from last month right next to it. He shows us that the mass being pushed is the amygdala and the mass now is the amygdala in an odd shape and place, damaged by the cyst.
"I went into your son's brain. I took pictures and will find them and email them to you and to Mayo to show them that this mass is the amygdala and that removing it will not do anything to help your son's seizures. I know what I saw. Look...I'm a surgeon and never give 100% certainty on anything...but I am telling you right now, I am 100% certain that removing it will do nothing. I am sorry."
That's really important...surgeons like to play God. They save lives. He could do this surgery and change our son's life forever, write a book about it and be famous, millionaire...but he's not. He's not going to play the surgeon/God game. That's about as honest as a surgeon can get!
Instantly, we are back to no answers...back to medicines trying to stop these seizures. Back to watching our child trend backwards in development.
Now, there's still other doctors looking and there could be a majority of doctors who disagree with our neurosurgeon. But, at what point are we just fishing for an answer we want rather than the answer that is right?

How Much More Can He Take?

I've been away for a few days for work, unfortunately. This is a picture Charlotte sent me this morning of what Gio looked like when he woke up. He has had a bad week of seizures and fell yesterday into a subwoofer in our basement and smashed his lip...woke up looking huge!

Gio has taken a beaten in his short life. If you look inside his mouth at his lower lip you will see a really bad stitching of a massive cut - he fell several years ago, but nearly through his lip. His chin has  great scar from 5 drop seizures that cut his chin open each time and it took that many times until doctors would stitch it.

Do you know that I have to carry a note in my wallet from his neurologist that says Gio has really bad seizures that cause him to fall and become injured so that when I bring him to the hospital I am not accused of child abuse?

I just wonder how much his little body can take...from the seizures that cause him to stop breathing and make his heart pound to the falls and bruises.

Really...this isn't fair for any child.

Where to go next?

It's been quite a while since I updated this...a lot has been happening...some good, but mostly bad when it comes to the seizures...they just seem to be getting worse.
We aren't really sure what the deal is, but he was quickly doing better after we started then after he got pneumonia and antibiotics, he stopped getting better, seizures changed and he's having a consistent amount daily...sometimes he has more than normal So...normal is 4 tonics while on the diet...and zero atonic/drops or absence. Lately, he's been having tons of drop seizures during the day and absence and the tonic seizures last nearly 2 minutes long...with 45 seconds of not breathing followed by these whole body twitches for another 1:15 or more. Prior to the diet, we were having 50 or more types of seizures a day...we dropped to 4 and are now at around 20 or 25.
For the most part, Gio is attentive and happy and stumbling around - he can't walk straight and seems like a drunk on State Street. He loves the swimming pool we got at the start of summer and can bounce around in it as it comes up to his chest...he blows bubbles in it and holds his breath when he goes under...he just needs to learn to come back up...that's an issue.
Most recently, our ketogenic dietitian and the neurologist got very concerned with his weight gain. We thought it was normal since he's eating so much fat...but, because it's a controlled calorie diet, he shouldn't have gained 15 pounds in 7 months. We think he looks great, but the diet doesn't work that way...and he might not be creating the ketones that can stop the seizures despite being in ketosis...very strange really. Charlotte and I have noticed he isn't chewing all his food... swallowing some things whole, which could be the problem.
But, for us...we need some more help.
So, Charlotte worked her ass off, as always, and we are now heading to The Mayo Clinic in Rochester in a few weeks. While we are confident in the doctors here at UW...even they want us to go to Mayo...to see if anything else is happening that might have been missed.
You just have to do everything you possibly can...there's no other way.

Stalemate

Gio is at a stalemate with the diet.

In the past few weeks, he's decided he's done eating...so, it's become a chore, again, to feed him. We do have the g-tube and can feed him the ketocal drink through the tube, but that's supposed to be a last resort for us; we wanted to use it when he's unable to eat because he's had a massive seizure that knocks him out.

His seizures are still around and have now changed...again. They are completely silent sometimes. If we aren't near him, we don't know they are happening or have happened unless we come and find him dazed with his heart racing. The seizures he has overnight - silent. Some, I can hear, but others...I have no idea. The past few nights, I've actually slept from 1am to 6 and not gotten up for a seizure. While that would be great, I know he is having them and I can't hear it. How? When I go to check on him when I wake up, he's on the opposite side of the bed, contorted. Sometimes, he has only moved a bit, but you can just tell he hadn't slept a lot the night before.

He's also lost some motor skills and is back to being the "drunk sailor" again; he's very wobbly on his feet and is falling a lot. He's also back to having a few drop seizures during the day.

So, I am hoping he needs a caloric intake change. Maybe he's grown so much and gained so much weight, we need to fix the fat intake of the diet to get him where he needs to be. He's getting between 1200 and 1500ml of water a day...the required amount is 1500ml. The Keto-sticks say he has a large amount of ketones...so, who knows.

We know the diet is working...it has curbed the seizures for the most part...but he's back to "not being here" sometimes; not as alert.

To top it off, the State of Wisconsin BadgerCarePlus is giving us a hard time about getting more respite care. We get a few hours a week now, but with the g-tube and the diet and amount of seizures, we tried in October to get more hours. The letter our care provider received was borderline abusive.

Whomever wrote it said it was impossible that he was having up to 60 seizures a day because after 9, we should be bringing him to the hospital. They want all our doctor records and our seizure log.

They just don't get it.

They have no clue about Lennox-Gastaut and what my son has gone through and are going to call me and my wife liars?

I want to bring Gio to this person's office and lock him in there with her for 10 minutes. I have a feeling, we would get what we need in less than 5.

No News is Good News

Things are pretty ho-hum in the Gio Keto world. That's a good thing, right?
He's been eating well, seizures down to 3 or 4 a day, mainly at night...like usual. He's been wobbly on his feet lately. Not sure what's causing that other than the normal low tone/no balance Gio that we have grown to love. Drunken Sailor Gio can maneuver through the worst obstacle courses and not bump into things. Although, he has been licking the walls...again. He had stopped doing that a few years ago.
I think he likes the color green.
We went to the neurologist 2 weeks ago and normally after hearing what they have to say about Gio's prognosis, we usually worry.
This time, we learned he had gained 8 pounds since December...that's huge since the diet is a form of starvation just a huge amount of fat to keep from starving.
Then we learned the doctor wanted to run a few more tests because she thinks he may have another form of epilepsy called Dravet Syndrome. So, blood tests and urine tests happened...and we are waiting to hear.
But, Charlotte and I talked about this right after hearing the doctor tell us Gio might have something else, we didn't flinch. We didn't get upset, we didn't start asking questions. Both of us just sat there and said....OK.
At this point, what does it matter which epileptic syndrome Gio has? All we can do as parents is care for him through life, make him happy, keep him comfortable and enjoy the time we get to spend with him for however long that is.

He Tries So Hard

Gio's been having more bad days than good recently. He seems to be having more of the extremely long tonic seizures while no longer having the multiple drop seizures or partial complex seizures. The tonic seizures cause him to stop breathing for anywhere between 20 seconds to 45 seconds - it feels like 2 to 3 minutes.
What's interesting is that he isn't lethargic and out of it for long times anymore - he snaps out very quickly. Prior to the diet, he would be out for half an hour to an hour sometimes.
It's a tough situation that he seems to be trying to fight. There are times where I see him looking hard at me just before a seizure and he looks like he feels it coming and is trying to stop it. Then it happens and he cries out when it's done.
They are hard to watch and not getting easier to control.
The issue, though, is we don't know if when he has bad days if he's eaten something he's not supposed. It's tough to keep him away from his little brother who walks around with all the food Gio can't eat. There are days where we here Benicio screaming "NO!" and running away with Gio chasing him...like a lion chasing its prey. While funny, it's sad.
We know one day he ate a cranberry and had a bunch of seizures the next day. Another day, he grabbed a piece of bread so quickly and saw me coming, he swallowed that thing whole! The next night...seizures every hour.
With all this, he is so "here" with us now. He runs around, responds to us, laughs a lot. And then there was this.
Last week his teacher called ecstatic. She has been with him for 2 years now in early-childhood education at a Madison Public School. She said it was his best day ever and had gotten a few seconds of video of him coloring...actually coloring a picture by himself. What's big about this is that he didn't try to eat the markers, didn't throw them away...he grabbed different colors and with a little bit of help colored a picture.
Once I get that video, I'll post it here.

Pneumonia, Meds and Other Changes

So...it's been awhile and a lot has been happening ... in Wisconsin and with Gio's diet. I'll stick with Gio's diet on these pages.
Gio got pneumonia in February and it was horrible. No other words can describe it. Before Gio's  adenoid surgery in September, he used to spend most of winter sick. This was the first one this winter which was great.
But, pneumonia is just plain horrible...especially when it's a kid who cannot tell you he is sick, has no idea what is going on and is having seizures while sick.
He was put on medicines and that really messed things up with the seizures...there was one night he had about 9 really big seizures...one every hour or so. They lasted a long time and looked like he was dying. Once the medicines got through his system...that took about 14 days, he returned to somewhat normal - 3 seizures a day.
We've also changed his medicines an I'm not quite sold. I don't think it's working at all.
And, as for his language...it has stalled again. He wants to talk, but cannot and he keeps wanting to lick everything...I mean EVERYTHING! That sucks when you go to the Children's Museum...trust me.
As for the foods...he's doing well but I think is getting sick of hot dogs. That's kinda sad for a kid.
Good things: He's doing well at school! And, the other day he and Benicio were upstairs watching Yo Gabba Gabba and they were both quiet. I went upstairs and found both standing in front of the TV just watching quietly. Gio stood there for 5 minutes mot moving. That's a HUGE thing!

Fun With Heavy Cream!

We can now add diet root beer to the heavy cream for Gio to drink. Since he gets 50 or more grams 3 times a day, the cream can start tasting gross. We have used saccharine drops to help with taste, but we figured he'd love the soda mixed in. The only other liquid he can drink is flavored water.

Much to our surprise, he isn't a big fan. It might be the diet aspect of the root beer, but if we use any other soda, it must be diet. And we have to research which we can use...just can't give him diet coke!

I also wanted to share these videos of Gio from last night - He's climbing from the window to the couch asking for his bottle and the second, he and Benicio are chasing each other rather than going to bed.

Going Down a Hill

I think there are a lot of parents out there that might take things for granted. I know I would.

What I do not take for granted is when Gio does something that other kids just do on a normal basis.

I took Gio and Benicio sledding today at Elver Park...great sledding hill, lots of kids.

What was so awesome was that Gio immediately walked up the hill and sat down, waiting for Benicio to come up the hill...he was pulling the sled. For Benicio, this was only the second time ever...he did this last year but was only 15 months old. Gio has done this before...and he showed that he remembered! And that's a huge deal!!!!!

I sat Gio in the back and Benicio in the front and pushed them down.

And here's something even more amazing...Gio used his hands as "guides" and kept them straight going down the hill. When they stopped, he stood up and began walking up the hill again!

The fact he kept his balance up the hill and realized he could use his hands to steer is huge.

Makes you want to not take things your kids do for granted.

How Much Crab is too Much?

So Gio has one Keto Meal that involves Crab and Tomato and Canola Oil and Mayo. Simple enough.
38 grams of Mayo mixed with 6 grams of Oil with some garlic salt, ad 37 grams of Crab and chop up 99 grams of tomato (nearly a whole tomato!) and mix.
It's actually the only Keto Meal we have that looks like a full bowl of food AND doesn't involve the drinking of Heavy Cream.
So...we had some crab in the freezer and I made some Monday and he loved it. I mean...I thought he was going to jump out of his seat at how much food he was eating. He then had some for lunch Tuesday. Now...I looked this morning and noticed there was more than enough crab left to make some more I told his nanny and she said, "He did have the for lunch yesterday." I said, go ahead and give it to him for lunch again.
And what did I do for dinner...same thing.
Now, in my mind, he's been eating junk for nearly 3 months now. Junk that has worked to ward of seizures, but still junk. So...to me, the crab was great! Mind you...it's A LOT of mayo and not a lot of crab...but he still gets a whole tomato!
Well...he was none to pleased when he saw the bowl of crab, mayo, tomato tonight. He is certainly done with it. He begrudgingly ate it...but I got dirty looks all night.
Basically, I'm cheap and didn't want the crab to go to waste. Poor kid...has a cheap dad.

Huge Strides! But Don't Drink That!

I have decided that feeding Gio the foods from the diet has become very easy.
Actually, this is much easier than when we had to feed him normal food! He eats it all, it only takes about 15 minutes and...the best part...he loves it!
Prior to this, Charlotte and I would spend more than half an hour trying to get Gio to eat most things...other than hot dogs. He would spit things out, turn his head or not chew the food and try to choke on it so he could vomit and not eat.
Now...he can't wait for the bacon or hot dogs or brats or sausage or chicken covered in oil. Tonight, he actually got to eat crab meat with tomatoes! Plus 36 grams of mayonnaise and 10 grams of canola oil. It actually looked like a full meal...of mayonnaise.
Regardless, I discovered something tonight that I had to test with him. I wasn't sure if he was just randomly doing something or actually falling directions.
I said, "Gio, please come here and go upstairs for a bath." He came from the living room to the stairs and turned to wait for me. I thought it was a fluke...so I walked away to grab Benicio in the kitchen and Gio went back to the windowsill to stare outside. I again said, "Gio, let's go upstairs and take a bath". He turned toward the stairs and walked up them and into the bathroom.
There's a few amazing things with this.
First, he walked up the stairs with no help.
Second, he followed my commands and actually walked up the stairs.
Third he walked into the bathroom.
Now...even parents of kids who have developed normally have issues with getting kids to follow commands...but when you have a child who you never thought would follow simple commands ever, this is nothing short of miraculous.
Unfortunately, on Sunday, he drank some whole milk Benicio left in a glass and we missed it. That's not good. He had a huge seizure that left him having smaller seizures for about 7 hours...barely able to sleep even after a strong sedative...and no celebrating for the Packers.
But, this morning...he was running around like nothing and had a great day in therapy.
I think this will be a great few years!

Major Med Change

Giovanni has been on a drug called Topiramate for more than 2 years. We considered it his base drug - we thought it was working because it limited seizures and whenever we added new ones, nothing changed. Gio has always been on 2 to 3 seizure drugs at a time...it's the way doctors try to battle the Lennox-Gastaut. But, none of the combinations have worked, obviously. So, now that Gio is only having the large tonic seizures, the doctors have decided to change to a new drug and remove Topiramate.

We are waiting to see a change.

While the small, constant myoclonic seizures are gone, the tonic seizures are getting longer. He's not breathing sometimes for more than 45 seconds. He still has these about 4 times a day...mostly when he's sleeping or about to wake-up.

It's good and bad at the same time. He's not having the seizures that left him unable to walk last year...but he's still having the seizures we believe are affecting his development.

One good thing...and most parents might not find this good...Gio is trying to bother his little brother...a lot. He's also trying to take bites out of him. Unfortunately, when Gio is very excited or frustrated, he chooses to use his teeth to remind people he's there. Ask John, a schoolmate in Gio's early-childhood class. Gio's teacher this week has to stick her fingers into Gio's cheek to pry his mouth off John's arm. Luckily, Gio didn't break skin, but John had great dental imprints a dentist could use to make a retainer from. While we are pleased to see Gio interacting with other kids...this might not be the best way.

This is the only time Gio isn't running around...while sleeping.

Spontaneous Sign Language

I spent a week in Phoenix with Benicio visiting my family while Charlotte stayed back home with Gio. It was a tough decision for us to be apart for the Holidays, but traveling with Gio on the new diet, we thought, would've been very, very hard. Plus, Gio had minor surgery on the 28th of December to change out the G-Tube and then he had his one month visit with the dietitian and neurologist about the diet.

The surgery went well...minor sedation to change the tube to a button. Now it looks like he has a plug on his belly rather than a huge contraption with a tube hanging out. We've only been using it when he doesn't drink all his fluids or if he has a seizure and cannot eat at the time he's supposed to be eating...and that's been rare. Since the diet started, he's been drinking water like a champ. He can drink flavored water and sucks that down like it's pure sugar. He has to drink about 48oz a day...he's drinking close to 65oz. We've been double diapering him.

So, while I was gone, Charlotte calls me very excited with some unbelievable news. Gio spontaneously started signing for "more". One of the first things he ever learned as a small child with the sign for "more". He used it constantly. When he started talking he would say more and sign it. All that went away in the past year and a half. But, Thursday December 30th after drinking a cup of water, he turned to Charlotte and signed "more"....no prompt, no cajoling...all on his own.

It had come back!

Of course, the excitement probably overwhelmed the kid because now he's constantly signing "more" and smiling. But, the praise we give him and he loves won't end. He's already started clapping for himself again!

It's pure joy for us to see this. It is surely a sign that everything will start coming back...it has to at this point.