New Diagnosis

Damonito tested positive for a gene mutation that causes Dravet Syndrome. His epilepsy is even more rare than we believed. Not that this changes his outcome, Damonito's epilepsy is severe, his seizures are polymorphic and intractable. Which means he has many types of seizures that are not controlled by medication. In other words, he has seizures every day.

It's Been Awhile

It's been awhile since I've posted. Damonito is doing as well as can be expected of a kid who has Lennox-Gastaut. He's 11 years old now and while this past year has been a bit rough, he's happy. Damonito had another surgery to replace a dead battery in his VNS. When the VNS was originally placed at the base of his brain, the doctors said the battery would last 10 years. This is the third battery in under 6 years but they estimate it's because it's at the maximum output so it wears down sooner. The VNS is an important part of his seizure control.

The bad news about this past year is that D'ito has developed migraine headaches. It's not hard to determine when a kid, who is normally very active, is suffering. And then of course there was the vomiting. He's taking a migraine medication, amitriptyline, however it's made his grand mal seizures worse. It's tough. It's all about the side effects. Everything that is done for him centers around the side effects. So having a couple of grand mals each week is better than him suffering from debilitating migraines.

D'ito is finally off Kepra, something they've been trying to do for some time. He still takes Onfi, Topamax, Neurontin, Fycompa, and Lamictal. If it sounds like a lot, it is. His doctors think he's taking too much medication but it's what keeps him from daily seizures.

 

D'ito celebrated his 11th birthday in July. We had a party delay because he had a long grand mal seizure so we postponed the party to the next night when he was feeling better. You never know what will trigger a seizure, it could be the wrapping paper, it could be he missed a nap but it takes awhile to recover so it's best to let him rest. But he loves opening presents. It's such joy to see his face light up. And of course, there's that laugh. It's so great to hear him laugh.

Tattoo you

 Whenever I visit Damonito, at some point during the visit he'll pull up my shirt sleeve to make sure that my tattoo is still there. He pats it and usually says, "ahhhhhhhh." Damon has a couple of tattoos too, Damonito does the same thing to him. Pats him on the arm and says, "ahhhhhhh."
Damon has his name tattooed on his arm and Damonito loves to look at it. He may recognize the letters as the letters in his name. It's hard to say.

We have a "Damon" stamp for his paperwork. Stuff coming from school and the hospital. It keeps the mounds of paperwork straight.
For fun, Damon will stamp Damonito's arm with his name. He smiles. He's very proud of his "tattoo." I don't know if he recognizes his name but it seems like he knows there's a connection.

Friends

Whitney and I took Damonito to the park again last Sunday. He likes to swing. He likes the slides but he really likes the wood chips. I think it's the texture. He rubs them in his hands and then he flicks them.

 When we got to the park Damonito went straight to the swings. He can't swing alone and he's far too big for the baby swing, although that would be perfect for him. I was trying to get him on my lap so he could swing but we were struggling. I could hear someone saying "Damon!" but I didn't think they were talking to us. I was busy trying to figure out how we could swing. However, I have to admit that his name is unusual enough the I'm always interested when someone else has the same name. I heard someone say "That is Damon!" And I looked up to see a little girl running toward us and her dad was saying, "That is Damon! Hello Damon!! It turned out to be a friend from school. There are 10 students in his class so the odds that we would run into

one of them is pretty slim. The little girl definitely recognized him. He did not recognize her, or if he did he didn't acknowledge it. Someone so far out of context may not make sense to him. When something like this happens it reminds me of things we experience that we take for granted will happen to everyone at some time in their life. Things like riding a bike or driving a car or going to the movies. There is nothing normal about his life. Is that such a bad thing? I don't know. He's pretty happy. Maybe that's all that counts.

Focus and clarity of thought

The other day I found myself in a situation that I've been in before. A young man was having a grand mal seizure and I found myself assisting with the situation. I've only been in a situation one other time when someone I didn't know was having a grand mal. Hers was not nearly as violent. The young man's seizure lasted about 3 minutes. It took about 15 minutes for him to recover to the point he could get up and his mom could help him get in the car.

The thing that struck me about the entire situation was the clarity of thought and focus I had in being able to help him. I knew exactly what to do. On the other hand, I'm a complete basket case when my own grandson has a grand mal which I've seen too many times to count. I panic, I've been known to yell (one time when he was in the hospital I was screaming into the hallway "HE'S SEIZING! HE'S SEIZING!!")
Seeing someone have a grand mal is alarming. No matter how many times you've seen it. Seeing your grandson have a grand mal is horrifying.

Easter Sunday

We visited the park today. It was a lot of fun but when we first got there Damonito broke out in this heat rash all over his body. I was pretty concerned but it turned out to be just fine. The video is from a few weeks ago when we went to the same park.

Happy New Year!

The good news for 2012 is that Clobazam has been approved by the FDA and will be available on the market in the US.
Damonito has taken every anti-seizure medicine on the market. Lennox-Gastaut is a progress form of epilepsy so eventually the medicine is no longer effective.
Clobazam has been the only medication that has consistently reduced his number of seizures.

Clozabam has been available in every country except the US. Damonito could have been part of a trial to study Clobazam but he had been on Felbatol and that could alter his results. His doctor was convinced that he would benefit from Clobazam so he was given Clobazam 4 years ago.
For the past 4 years, his family has had to purchase Clobazam from a Canadian pharmacy to the tune of nearly $700 per month.

So HAPPY NEW YEAR! Damonito's next dose of Clobazam will be covered by insurance.
Hallelujah!