Jingle Bells

There is something incredibly sweet about watching a bunch of four year olds sing Christmas songs at a school program. They made me laugh and cry at the same time.

Side effects

Sometimes the side effects of the medication are worse than the disease. Sometimes medication can even make seizures worse. Or can cause a different kind of seizure. Side effects include: blurry vision, fatigue, sleeplessness, upset stomach, slurred speech, irritability, aplastic anemia, memory loss, learning disabilities. Allergic reactions include: skin rashes, low blood cell count, liver damage.

out of options

Epilepsy medication is used to treat the symptoms of epilepsy, but it's not a cure for the disease. When a person starts a new epilepsy drug, it often takes time to find the right dose to provide optimal seizure control with minimum side effects. Since 1990, a large number of epilepsy medication has been approved by the FDA, increasing the treatment options for patients.

How well an epilepsy medication works may be affected by other medications the patient is taking. With Lennox-Gastaut there is no single medication that will control seizures. Also with Lennox-Gastaut, new medications initially improve seizures but within a few months patients develop a tolerance to the drug to the point of ineffectiveness.
Damonito is currently trying a new drug that has just been approved by the FDA. Just in the nick of time. He hasn't been doing well and we've been hoping for a new development.

now you see it, now you don't

When my dad had his stroke there was a guy who shared a room with him in the rehab hospital we called Houdini. Unfortunately I don't remember his real name, but my sister and I gave him the name because the minute the nurse would leave the room he'd take off his clothes. Which was really a feat since he was strapped down.


Damonito is never strapped down so it makes taking his own clothes off much easier. And he does. Immediately. Although he manages to keep his clothes on at school, mostly, he rarely has clothes on at home. He'd take his diaper off if we didn't tape it. Even then sometimes he gets it off. Which never ends well.
I don't know if there is some connection between his epilepsy and him taking off his clothes. Maybe his skin is overly sensitive and it just feels better without them. Maybe he just likes to be naked.

Mom knows

Damonito's mom, Nicole, is amazing. She is the backbone for the rest of us. I'd call her The Rock but the nickname is already taken. She has crystal clarity even at the worst of times. In those times I feel pretty worthless, although I am good at yelling for help. I take my cues from Nicole and I've only seen her actually break down twice throughout this whole ordeal. Really lose it.
She knows everything about Damonito. She knows exact amounts of every medication Damonito has ever taken. It's been a lot. She knows his weight in kilos. She knows how he'll respond in any given situation. She knows how many hairs are on his head. She can tell when he's going to have a grand mal. She knows everything. It's amazing.
I've never once heard Nicole say, "Why me? Why us? Why him?" I've never heard her say that she can't do this anymore. She's never blamed anyone, she's never felt sorry for herself. She gets up everyday and she is The Rock for the rest of us (now I can't say what goes on in her head in the middle of the night but that is her own and she's entitled). All I know is I feel like she's taking the bullet for the rest of us. And I am in awe of her.

Robust Frame

One year for Halloween Damonito was The Incredible Hulk. It was the perfect costume but not so much a costume because he is, after all, incredible. And he is a hulk. Not so much in size as in strength. The kid has guns. From across the room he seems a little helpless. Get closer and he holds his hands up to take your hands and the next thing you know he's pulling you down to the floor. You think because he's only four that he can't be that strong. He is.

the ability to spring back

The resiliency of children is amazing. Damonito has managed to find his way back from places that there was no return. Sometimes no worse for wear. He's a fighter. We're lucky. We are amazingly lucky.

Sometimes simple is complicated

Damonito is at a much greater risk for seizure when he's sick or tired. That's where the good days/bad days come in. If he's had trouble sleeping usually a bad day will follow. If he has too many bad days in a row he could land in the hospital because his seizures will be uncontrollable. So sleep is very important. Part of the reason he hadn't been sleeping so well was because he wasn't breathing well while he was sleeping. So, to help with his breathing the doctors removed his tonsils.
A tonsillectomy is outpatient surgery these days. They wanted to keep Damonito over night for observation. When his system is compromised everything is vulnerable. He went into and out of surgery like a champ. Afterall, he'd had brain surgery. This would be a walk in the park.
So we thought.
Three grand mal seizures during the night changed everyone's opinion. His oxygen levels had dropped dangerously low and he had to be moved to PICU (pediatric intensive care unit).
He had become comatose and for three days we weren't sure he was going to come out of it. This was one of the times they called in the chaplan.
Not much comfort after a tonsillectomy.

Big Eyes Big Eyes

Damonito has had four surgeries. He has a g-tube, he has a VNS chip, he had brain surgery last summer, and this summer he had his tonsils taken out. I have photographed him before and after surgery, on good days and bad. I have photographs of him laughing hysterically and I even have photos of him having seizures. But I have spent the past four years trying to capture essence of Damonito's unnaturally long eyelashes.

It's in the little things

Brain surgery is huge. I mean incisions are made in the top of the skull to remove a flap of bone, exposing the brain. The outer covering is cut and the two hemispheres of the brain are slightly pulled apart to expose the corpus callosum. The fibers of the callosum are cut and once the bleeding is controlled the brain covering, bone, and scalp are stitched closed. We knew all of this before it happened. We were told what to expect. Surgery could last eight hours. There could be swelling. All sorts of complications. But we knew it all. We were prepared for the worst. We were ecstatic when the surgeon came out after only four hours to tell us how well Damonito had done. He invited us to the recovery room to see for ourselves. Damonito was asleep but he looked pretty good for just having had his head cut open. There was this small dot on his forehead, a cut, like the point of a knife. We speculated how it got there. So when the surgeon came back we asked. After the stress and worry of Damonito having brain surgery it was the cut from having his head screwed to the table that brought me to tears. No one told us. I guess they assumed we'd know.

Tooth and Nail

Last Spring Damonito's drop seizures were at an all time high. He was having hundreds of seizures every day and when he was upright and walking around they were the "crash and burn" kind of seizure. He had his very own padded playpen where he spent most of his time awake. It was simply too dangerous for him to be out on his own. When he was out, he was fast. He was so determined but his seizures were so intense that mostly he would collapse unable to catch himself. We couldn't take our eyes off of him for second. And even then there were injuries. Lots of bruises, some stitches, and a missing tooth.

Internal rhythm

Epileptic seizures occur when large numbers of brain cells send electrochemical messages rhythmically and in unison. It is this simultaneous "firing" the brain cells which disrupts normal behaviors and causes shaking, confusion, and loss of control. The vagus nerve stimulation chip or VNS is designed to prevent seizures by sending regular, pulses of electrical energy to the brain via the vagus nerve. It's something like a pacemaker for the brain. The VNS, pacemaker part, is placed under the skin on the chest wall and a wire runs from it to the vagus nerve in the neck at the base of the brain. Once it's in it's in. Half of all patients with VNS experience about a 50% reduction in seizures. Only 9% have complete control. We had to try.

"Shake well before use"

When Damonito was six months old he had a grand mal seizure that nearly took his life. A grand mal seizure lasting more than five minutes or immediately followed by another grand mal seizure can result in brain damage or death. This particular seizure lasted forty-five minutes. Damonito's medication levels are always checked when he is admitted to the hospital. His tegretol levels were 0. His pharmacy had mis-mixed his medication. To be more precise, they didn't shake it up before dispensing it. He hadn't had any anti-seizure medicine for two weeks.



We're not sure exactly what happened, if his ability to swallow had been compromised by the seizure or if it would have happened anyway, but at that time he lost the ability to swallow. He aspirated formula from his bottle into his lungs which creates a whole other set of problems. The G-tube went in and since he couldn't pass a swallow study he couldn't have anything by mouth. It would be two years and a lot of therapy before he would eat solid food. And he really didn't know what to do with it. It was a tactile experience. Mostly he played with it. He's getting better with it now. He can use a spoon. And sometimes he actually gets it in his mouth.

Two Thirds

The biggest difference between focalized and generalized seizures is that if Damonito had focalized seizures they could remove the part of the brain with the seizure activity and his seizures would stop. With generalized or "whole brain" seizures if they can stop the misfire from one half of his brain to the other there is a chance that the seizures will also stop.
The problem with the surgery is that if they cut the entire corpus callosum then the necessary communication between the two halves of the brain is also cut. Which means things we take for granted, like reading, would be impossible. So they cut only two thirds of the corpus callosum with the hope that is enough to stop the misfire. The theory is if two thirds works then seizures are controlled and the child could have some hope of normalcy. If the seizures continue, then consideration must be given to cutting the entire corpus collosum. Since Damonito's surgery only reduced the number of seizures without eliminating them, we have a lot to consider.

One day

For most forms of epilepsy the earlier in life the seizures begin the greater the chance that the child will grow out of it. Boys are more likely to have epilepsy than girls. Approximately three-fourths of children with epilepsy can completely control their seizures with medication and 70% of children who have been free of seizures for two years will remain seizure free without medication for the rest of their lives. We're looking forward to just one day without seizures.

We never lose hope because miracles do happen. We've seen it with our very eyes. We've seen Damonito recover when even the doctors have given up. He's been comatose and resuscitated, we've seen the forlorned looks of the hospital staff, they've even called in the chaplan. Somehow he's managed to find his way back.

Nothing out of the ordinary

Damonito has two types of seizures. He has grand mal seizures, which are the biggies but are basically under control with medication. When he's sick or tired he'll still have grand mals. The other type of seizure he has are atonic or drop seizures. These are small seizures that range from the drop of his head to a "full out crash and burn across the living room floor" seizure. They last only seconds but they can be alarming. These drop seizures are not as intense as they used to be nor are they nearly as frequent. Last year before surgery he was having well over 100 per day.

Damonito has an older brother, Joe. Joe knows that Damonito has seizures. He is often protective but on occasion he's used it to sneak a favorite toy from Damonito. "It's giving him seizures, Mom."

YOINK!

It's rare for the family to go out together. It's just hard because anything can trigger the drop seizures. But we decided to go out for lunch one day. We walked into an Indian restaurant, sat down at a large table in the middle of the room. Secured Damonito in the high chair and he had a drop seizure and just planted his forehead on the table with a loud THUD. Everyone in the restaurant looked up and Joe, without missing a beat, held his arms out straight as if to hold back the crowd and said loud enough for everyone to hear,

"It's ok, he just had a seizure. He's ok."

No words are necessary

There is a link between epilepsy and autism. Damonito doesn't have autism but he has autistic tendencies. He has repetitive behavior (he loves to slam drawers and cupboards over and over) and he doesn't talk. However, he's a cuddle bug and he gives great hugs and kisses. When he hugs you he gives you this comforting pat on the back as if to say everything will be alright. Right now he has about a five word vocabulary. He clearly says "up" and "uh-oh" and at the appropriate time without being prompted. He's learning sign language too. He has about five signs: want, more, eat and two others he made up. We're not sure what they mean but he seems to use them at a time that makes us feel like he's swearing at us.

10 fingers and 10 toes

The first thing you do when you have a baby is you count their fingers and toes. I don't know when and where that started but I know I did it when my kids were born and I counted my grandkids fingers and toes when they were born. I'm sure my mom counted mine when I was born. It's just what you do.

Damonito has tried every anti-seizure medication approved for epilepsy by the FDA. And then some. He was on the ketogenic diet, he has a VNS chip, and last summer he had brain surgery, a corpus-colostomy. Two thirds of the membrane that connects the two halves of his brain was severed.

He has 10 fingers and 10 toes.

Beautiful Boy

Damonito has a rare form of epilepsy called Doose Syndrome, which is a form of Lennox Gastaut Syndrome. There is no known cause and the seizures are whole brain, or generalized, seizures as opposed to being focalized in one area of the brain. What makes it severe is that it's difficult to treat because it's resistant to medication and treatment.
Some days are good. Some days are bad. We never know.

Meet Damonito

Damonito is four years old. I call him Damonito because his dad's name is Damon. It's my way of keeping them straight. Damonito is epileptic. He's had seizures since he was 4 months old. His seizures are a daily part of his life. This is his story.