human beings are resilent

It was a good summmer which rolled into a good fall. In the never ending quest for the perfect medication to end all epilepsy medications for Damonito yet another drug was introduced. Sabril or vigabatrin was the latest attempt.
It lasted 4 days, sending Damonito into status and to the hospital where he spent a few days.


He's off Sabril, which wasn't such a sacrifice given the fact that the side effects included permanent visual impairment. Tunnel vision in 25% of adult users so severe that they had only 10% of their field of vision. It seems like the worst side effects of a drug always seem t effect Damonito in the worst way.

Before sending him into status it was causing him to have spasms or constant twitching. He had something that we can only describe as a panic attack. It's hard to know. Plus, Sabril causes liver damage and dental issues.

So it was back to Dilantin and he's feeling better. I didn't see a single seizure on Thanksgiving. It was a welcome change.
I haven't posted for awhile so I'm sharing some photos from the past couple of months.

He shoots! He scores!

A couple of weeks ago I got a real treat and I got to go to Damonito's school. He loves school. He has lots of kids with disabilities to play with and learn from. Nicole was with me and when we arrived, he was having P.E. A teacher came in and the kids got to play basketball. Damonito is pretty good at it. He has great motor skills. We could hear him "talking" and laughing, Damonito has only a few word vocabulary but it's such a joy to hear him speak. Nicole and I had to hide in the office and watch through the window because if he'd seen us, it would have ended there. It was great to see him having so much fun.



Damonito's cognitive skills are at about an 12-18 month level. This summer when I got to hang out with his 7 month old cousin, Calder, I could see some similar repetitive behaviors, they both are very tactile and like to rub and scratch things with their fingers. Damonito will probably never talk in sentences but it's wonderful to hear him learn a new word. I think he understands what we are saying to him, he totally gets it when you say "gimme five!"

He continues to have grand mal seizures each week which can keep him home from school. He's a happy boy with no fear and a ton of determination.

special, indeed

Damonito's brother, Joe, and I recently flew to Ohio for a big family gathering. My mom, Damonito's great grandmother, turned 80. Joe and I got to spend a lot of quality time with the family. We were sitting on the plane in Columbus, Ohio getting ready to return to Phoenix and Joe was talking about the trip. Joe is very intrigued by everyone's relationship to each other so we spent a lot of time discussing how he was related to everyone. We were talking about my sister, his aunt, and I was telling Joe that I had an amazing sister. She is the best sister in the whole wide world and I thought I was pretty lucky. Joe said that he had the best brother in the whole wide world. He said that Damonito was very special. "When you are born handicapped, you come out special."
He's right. Damonito is, indeed, a very special boy.

Happy Birthday dear Damonito...

July 27th was Damonito's 6th birthday. His brother, Joe, and I were in Ohio attending my mom's 80th birthday party. It would have been awesome if he could have gone to Ohio, too, but traveling is out of the question. So we had his party Saturday. He wasn't having the best day. He'd had a grand mal in the morning and was pretty dragged out in the afternoon. He seemed sleepy and sedate. Until we brought out the presents.

He loves when you light the candle and sing "Happy Birthday." As I've said before, he has autistic tendencies because of his epilepsy so opening presents and tearing paper is a lot of fun for him. And his new pop-up game is the perfect repetitive motion he seeks.

kids love water

Damonito loves the pool. This year he is tall enough to stand in the big pool with his head out of the water. He's getting so tall.











He loves the little pool, too, because he can reach the sand to play with it. Yep. It all ends up in the pool. Damonito picks up the sand and rubs it into his palms until it falls into the water then he picks up another handful and does the same thing. He does this over and over.






People with epilepsy are 5 times more likely to have mental health and behavioral problems. Damonito has "obsessive compulsive behavior" that is directly related to his epilepsy.

Children who experience generalized seizures are more prone to problems with inattention and hyperactivity. He's in his own world. Only occasionally catching your eye and smiling just to let you know he's having fun.

school's out for summer

I was hanging out with Damonito today. The school year is over and because of a technicality, he's ineligible for summer school. He has had a great year at school. He's saying and signing more words, he's much more attentive, and he's feeding himself. Which is a sight to behold.
One of the symptoms of Lennox-Gastaut is learning regression so an entire summer without going to school can't be a good thing. We will do absolutely everything we can to make sure he's working on all the things he's learned. We know it's not the same.

Damonito's been quite interested in my glasses. He's been gently taking them off me and putting them on himself. He'll sit there for awhile and look around, like they give him a different view. Then he carefully takes them off himself and puts them back on me. Upside down.

He's doing great feeding himself. His new thing is he tries to tickle you. Which is hilarious because he takes both hands and wiggles his fingers on your back or you leg, places that would never tickle. Of course, he cracks up and you can't help laughing hysterically because he's getting such a kick out of it.

new room...

Damonito's bedroom is getting an overhaul. New paint. New flooring. He now has this great spongy pad on his floor.


He needs a soft spongy floor so if he has a seizure and falls he won't hurt himself. He's having about 2 grand mals a week. His neurologist is going to boost his VNS, his meds are already at the maximum. It's all part of having Lennox Gastaut.

Check this

Read the Axelrods' story

don't let it bring you down

There is a great series of articles about epilepsy in Newsweek this week. The first article explains how common epilepsy is and that research for a cure is underfunded. You should read it... you can get it on-line at www.newsweek.com. It's worth reading.
It was interesting because I understood everything they were talking about. All the different drugs, the Keto diet, the VNS, brain surgery and of course, the seizures. This paragraph from Jon Meacham's article A Storm in the Brain resonates with me, with us so much:

Though the most overt examples of discrimination and demonization have faded with time, epilepsy still receives too little attention, either from the medical community or the public at large. Why? One reason is that advances in drug treatments have created the popular impression that epilepsy is now an essentially manageable condition. (Which, for two thirds of patients, it is. But that still leaves a third for whom it is not.) It is thought to be rarely fatal, controllable by medication. There is a terrible irony here: because most people with epilepsy are not in a constant state of seizure—they are, rather, in perpetual but quiet danger—their condition can appear less serious than it truly is. It is all too human, but all too true, that a problem, including the problem of a serious medical affliction, stays out of mind when it is out of sight.

I think about it everyday. I worry everyday because I know that epilepsy could take Damonito's life any day.
That said, he's doing well. We're seeing a few more drop seizures but he's still having far fewer seizures than a year ago. Clozabam is helping him tremendously. Changing the battery in the VNS has proven effective, it seems to be managing the seizures he was having in his sleep. He's having about one grand mal per week. He's doing ok.
And he lost his other front tooth. He's pretty cute.

Pediatric Epilepsy Monitoring Unit

I have to give a shout out to St. Joseph Hospital and the Barrow Neurological Institute and their new Pediatric Epilepsy Monitoring Unit! How cool is that? An entire unit devoted to epilepsy in children. It's amazing. It's beautiful!

VNS

On February 9th they will turn on Damonito's new VNS. They had to wait for a couple of weeks to make sure that his body didn't reject it. He's doing fine. He's developed a new type of seizure, myclonus, that are occurring in his sleep. These are muscle twitching kind of seizures that indicate that his Lennox Gastaut is progressing. The hope is that the VNS was actually helping these seizures that generally occur in his sleep.

a battery of surgeries

Damonito has had five major surgeries. His biggest surgery wasn't even the most distressing. Although his brain surgery was scary and huge he came through it like a trooper and recovered rapidly. It was his tonsils, outpatient for most people, that caused the greatest stress.

He had an anaphylactic reaction which caused seizures which caused unresponsiveness for several days while we had no idea whether he was going to pull out of it or not.


So when Nicole texted me on Wednesday to tell me that Damonito was having surgery on Friday to change his VNS battery that had gone dead, I was more than a little concerned.
I had a huge knot in my stomach when the intern said "this will be a walk in the park compared to his other surgeries." Yea. We'd heard that before.

The upshot is, the surgery went well. Damonito did great. He's home. He's happy. And he has a new battery for his VNS that is tiny compared to the last one he had.

tough tired

Nicole and I have been trying to work out my phone troubles for a couple of months. The "troubles" are that I can't receive photos from just anyone on my phone. Well, a more accurate statement would be that my phone service doesn't allow photos over a certain size. Nicole figured this out and my first test photo was a photo of Damonito sleeping, with the caption "tough day at school."
Later, I was talking to Damon and I asked him about Damonito's rough day. He seemed confused and was explaining that Damonito's school had brought in a truckload of snow for the kids and that he had played all day. I mentioned to Damon that Nicole had sent me this photo, Damonito was sleeping, with the caption, and I assumed he was sleeping because he'd had a "tough day" of seizures at school. Still confused, Damon asked Nicole while I was on the phone and it occurred to all of us at about the same time that what Nicole had meant was that Damonito had had a "tough day of play" at school and he had passed out from being tired when he got home.
A "tough day" had always meant a bad seizure day to me, so it was nice to have a "tough day" just mean a long, tiring day. Personally, I'm hoping for a lot more of tough/tired days.