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!

Cast off

 For the weeks that Damonito had his cast on, he stopped tearing paper. His room was completely devoid of paper confetti. It was strange to walk into his room. No tiny pieces of paper stuck to your feet. He loves to shred paper, how could a silly broken arm keep him from doing something that makes him so focused?

For the days following the removal of his cast, he babied his arm. He still moved it by picking it up with his right arm. He just let it hang there like it was useless.

 When I went over for a visit last weekend I was surprised but pleased to see shredded paper everywhere in his room. He's using his left arm like nothing happened. And he's back to making confetti.

Broken Arm not Broken Spirit

Damonito fell and broke his arm. The doctor who set it felt that it wasn't because he'd had a seizure but more likely that he had fallen and was trying to catch himself from falling. He came down hard on his arm and it broke at the elbow.
He had surgery to place 2 pins in his elbow went well. No problems. He spent the night in the hospital. It was his first trip to the Phoenix Children's Hospital, where he will be going from now on. The hospital was great. We will certainly miss Barrow and Dr. Ng (he's taken another job outside of Phoenix)
We were never sure if Damonito was left or right handed and now we're pretty sure he's left handed.
He broke his left arm.
To move his arm, he very gently picks it up with his right hand. He won't move it on it's own.
The good news is that he's getting his cast off for his birthday in 2 days.

If he'd had a seizure, he wouldn't have been trying to catch himself. He would just fall over like a tree. Timber.
When a person has a tonic clonic seizure (better know as a grand mal seizure), the tonic phase comes first: All the muscles stiffen. Air being forced past the vocal cords sometimes causing a cry or groan. The person loses consciousness and falls to the floor. The tongue or cheek may be bitten, so bloody saliva may come from the mouth. The person may turn a bit blue in the face. After the tonic phase comes the clonic phase: The arms and usually the legs begin to jerk rapidly and rhythmically, bending and relaxing at the elbows, hips, and knees. After a few minutes, the jerking slows and stops. 

Another good long time.

It's been awhile since I've posted anything about Damonito. He's doing well.

 He's still having regular grand mal seizures. But his medication seems to be keeping all the other seizures in check.

He's in second grade and takes the bus to school every morning.

He's incredibly sweet.  He loves to give hugs. He'll take your arms and slip them around his waist.

Damonito still has a feeding tube but it is solely used for his medication. He's eating all of his meals and drinking all fluids by mouth. We go out for walks. Elmo is still his favorite. He's been watching Dora the Explorer lately. Because of his OCD he still loves to tear paper (if you need some confetti, he's your man). He still stacks blocks. He's doing well.

A Long Good Stretch

Damonito has gone since last fall without a trip to the ER. Some times I feel like it backfires when I post that things are going well because it seems to always take a turn. The fact is that he has so many hills and valleys that there are bound to be problems at any given moment.



He's doing ok. Still having too many grand mals. He had three in one day last week.

Recovery from the grand mals seem to be a little better. Faster. That makes everyone feel better. School has been great. He's learning more signs. He is still very tactile. He loves to touch and feel things.  He's always interested in my watch or my bracelet. He loves the lense cap to my camera.




We're hoping for another long stretch of good.

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.