Lennox-Gastaut Syndrome

I'm trying to remain optimistic.

I'm looking at both the good and the bad.

The Good News. The Doodle hasn't had a head drop seizure while awake since September 11th!

Now the Bad News.
The Doodle has been having sleeping seizures again, and they've become more and more frequent. Today he had 3 just during his nap. Since he sleeps with us, I can count how many he has in the night because he's right next to me. He wakes up an average of 5 times a night with these weird sleep seizures. This is what it looks like:

1. He screams out, usually--but not always
2. His breathing gets heavier and deeper
3. His body stiffens up
4. His eyes open and roll back in his head

They last about 5 seconds, not very long at all. Sometimes he'll cry a little bit right after until he can be comforted and told it's going to be OK. Then he usually goes right back to sleep.

So something has definitely changed. He's been doing great with NO seizures during the day while awake. He's had a few "staring" spells where he's dazed off and stared, not sure if it was a seizure or not...mainly, he's only having these sleeping seizures right now.

Remember me? The Control Freak? The one who wants to know? Well, is the medicine working or just kind of working? Is the medication subsiding what might be a grand mal and just these little tonic sleeping seizures are breaking through? Or has something changed in his brain and now this is what he's getting?

I want him to have another MRI. It's been since last February and I want to make sure nothing has changed or there is nothing growing in there on his brain that shouldn't be. I'd also like him to have another sleep study eeg so that we can see exactly where and what these night time spasms are.

Since the Doodle was always a horrible sleeper--very light sleeper and he would always wake up screaming as if he was "falling". He would scare himself awake every day and night. The doctors think these were infantile spasms (seizures). This explains a lot. It wasn't until last January when he had his first grand mal seizure that I ever realized he could have been having seizures all along.

Scary.

While googling these sleep type of seizures tonight, I came across some information on the type of epilepsy the Doodle has. I was especially interested to see that besides the speech and development, behavior issues is also part of this epilepsy. Super. So it sounds like we can chalk up some of his behavior to epilepsy with a side order or autism and a buffet of side-effects from the anti-seizure drugs sprinkled in with Terrible Twos, ahem, Threes.

What is Lennox-Gastaut syndrome?
LGS is a rare and severe form of epilepsy. It occurs more often in boys than girls, and usually develops before the child is 5 years old. It accounts for up to 4% of all childhood epilepsy cases.

LGS can be caused in several ways, including problems with brain formation or head injury. Although it has many possible causes, in 30-35% of cases no cause can be found.

Characteristics of LGS
LGS is often difficult to spot. Many healthcare providers and caregivers do not recognize LGS readily. It is often identified by the following:

Experiencing several seizure types and sometimes many seizures in a day
Delayed intellectual development
A distinct brain wave pattern on an EEG

Challenges of LGS
Behavioral problems are common and often the biggest concern to parents and caregivers. Examples of behavior issues may include acting out, aggression, refusal to cooperate, hitting, biting, crying, jealous behavior, and insubordination.

Cognitive impairments are common in epilepsy. Cognitive effects may include attention, memory, learning, speech, language, and other functions.

B I N G O !

Standards

The Doodle is completely out of it. He can barely walk on his own; he's very wobbly. I can tell he doesn't feel good because he didn't want to get his picture taken. He just looks very sad.

Since the weekend hospital drama I'm feeling like my standards have been lowered where my happiness is concerned. I had to go to work this morning at 6:30 a.m. so I called my mom a couple of times to see how the Doodle was doing. When she told me he had one grand mal, I found myself relieved that it was only one. Never before would I have been relieved to hear that he had a grand mal. I guess I've lowered the bar. Now if we don't land in the hospital I will consider it a good day.

At least our nurse was here this morning when he had the seizure. She was able to time it and check his vital signs during and after the seizure. He is not the same baby he was last week. I watch as the seizures chip away at his already medically altered personality. He looks severely drugged and tired and is cranky yet unresponsive. His eyes look vacant and his dark purple circles look like they might hurt. He could barely clap his hands. He is going in and out of sleep fighting it every step of the way; not sure if this is from the multiple seizures or the high potency drugs in his system; probably both. It's almost like he is afraid to go to sleep because he knows what is going to happen to him.

If you would have asked me last week, I would have optimistically told you I didn't know how much longer we would need a nurse since he had gone the whole week without either kind of seizure.

I'm waiting for a call back from UCSF so that we can see what our next step is going to be. With such limited options, I have a pretty good idea what they are going to tell me.

They will tell me to just sit back and wait.

The Calm Before the Storm

I'm sitting in a hospital bed right now holding a very sick little Doodle. Things went from bad to worse last night after his second grand mal seizure. He had seven more. This is the Doodle's record. Nine big ass-kicking grand mal seizures in 12 hours. He is fried.

We called UCSF and they told us to bring him to our local hospital's emergency room so that they could give him a sedative drug meant to stop or interrupt the seizures. They were coming almost every hour and they were horrific.

The Doodle is very sensitive to sedation drugs. They have the opposite effect on him. Valium hypes him up. So now we sit here, watching the Doodle bounce off the walls not sleeping. Our little insomniac is screaming, totally freaked out yet so tired he can't stand it. All he wants to do is pull his IV out. He didn't sleep all night. None of us did. The irony is being tired can bring on seizures...

The last week he had virtually no seizures. It was awesome. We had our baby back. His entire mood and spirits were up! He got a taste of what it must feel like to feel good.

I thought the medicine was finally working. Part of me, the wishful part, thought maybe he had outgrown them. It's possible right? Possible but not likely.

It's as if the anti-seizure medicine had been suppressing the seizures but then pissed them off in the meantime. Hell hath no fury like a pissed off seizure. Now they were catching up. Never, ever, has the Doodle had this many grand mal seizures in one day. His high score was 4 in one day and that was rare and then he didn't have another one for a week and a half.

The two doses of Ativan have done nothing. You would think they would have knocked him out. Nope. Wide awake. They even tried some Benadryl. Nope. Still awake. Every time he starts to fall asleep, he jolts himself awake and then screams. Almost like he's getting an electric shock or having another seizure. We can't tell and they do not have him hooked up to an EEG; so we do not know.

They told us they were going to transport us to UCSF because they do not have a Pediatric Neurologist here and now our nice new doctor is there anyway. But UCSF declined. They said there is nothing they can do for us there that they can't do here. Basically, there is nothing you can do for seizures except watch and wait and then throw medicine on them and hope for the best. I'm not going to take this personally.

I wish they could at least tell us why this is happening. What is causing these seizures? There is something very wrong with the Doodle and we do not know what it is. The seizures are not the disease but a symptom of another disease or so I read.70% of epilepsy cases never learn the why...it just is.

They've once again increased his medication dosages, so we will have to wait and see. As for how long we will be in here, I do not know. He's already had two grand mal's here at the hospital. I'm not sure the pissed off seizures are ready to stop any time soon.

They are talking about doing a spinal tap. I can't imagine that so I am trying not to think of that right now. This would be to see if he has Meningitis. Wouldn't he have some other symptoms? He has none. Just seizures. I had Jim google Meningitis. It's a pretty scary viral infection.

Please say a prayer for the Doodle. He can use all the prayers he can get right now.

Thank you.

Living With A Terrorist

I’ll never forget September 11, 2001. I remember exactly where I was when the tragic life changing event of our century took place. I remember watching the first tower burning on the news with astonishment. I remember sitting with Jim on the edge of the bed and holding Jimmy while I sobbed. I remember being in complete disbelief and then it happened again…another plane flew straight into the second tower. I remember brushing my teeth with Cinnamon Close Up toothpaste and feeling sick to my stomach. I still can’t brush with Cinnamon Close Up without feeling queasy. There was so much confusion, commotion and speculation and it was still unclear as to why the first plane hit the first tower, and then the second plane hit. As the day’s horrific events unfolded, and more reports came out about the other planes—the one into the Pentagon and the one that crashed into the field in Pennsylvania, it was obvious that it was the sinister work of Hijacking Terrorists.

I remember not opening our store that day, being afraid that this terror attack could strike in more and more cities throughout the day. I was glued to the news. I remember not wanting to leave our house and being scared about not having enough food and supplies should this turn into some kind of horrifying and devastating World War on American soil. Those events that day shook all of us.

We took Jimmy out in the boat again tonight so that he could knee board. Grammy was home from her vacation house so we asked her to watch the Doodle. He’s been doing so great with the seizures this last week. And then we got a call from Grammy. He had a grand mal tonight around 5:30 p.m. He was having a good time jumping in his bouncy house and then it happened. He likes to climb in and out of the jumpy and he fell down and went into a seizure. My mom doesn’t know if the seizure caused the fall or the fall caused the seizure…It was the bad kind. She said it lasted about a minute. Usually after he has a big seizure, he is out of it and exhausted. He sleeps and you can’t wake him up for at least 20 minutes to a half hour. This time he screamed and cried for a long time right after. She said she couldn’t calm him down. I’ve heard from people who have had seizures that they can wake up from a grand mal and be nauseous, agitated or have a headache. Since the Doodle doesn’t talk, he can’t tell us what he is feeling.

It’s 11:17 p.m. and the Doodle is laying next to me and Jimmy watching the Backyardigans while I type. He’s all wound up and won’t sit still since he slept for a couple of hours tonight with my mom after the seizure. Out of the blue, he just let out a yelp and went into another grand mal seizure. This was one of the worst one’s I’ve seen, his face was contorted with his eyes rolled back into his head. It’s hard for me to watch and then I looked over and saw the look for terror on Jimmy’s face. Even though he’s scared, Jimmy is trying to be so strong. He said, “It’s OK Mom, I’ll go get Dad.” And then he ran in the other room to get Jim. The full body convulsing lasted about a minute and now the Doodle is sound asleep, exhausted from the reign that just took over his precious brain, body and soul.

Jim told me the other night that he felt like the Doodle’s body and brain had been invaded by a Terrorist. He was right on the money.

Although the Doodle’s seizure disorder is not as gravely morbid, economically and politically devastating as 9-1-1, living with Epilepsy is similar to living with a Terrorist. Once the seizure strikes you are scared, effected and confused. You’d do anything for the seizure to stop. You pray, making desperate deals with God. Once it finally stops you are hopeful that it will not return. Then the seizure returns…and your hope has been crushed and there is nothing you can do but wait. First you wait for the seizure to stop and then you spend the rest of your day or week waiting and watching for the seizure to return. You can’t relax. Even if the seizures have gone away for a few hours or days…you know they are coming back; planning their attack at the perfect and unsuspecting time where they can inflict the most terror, damage and pain. This type of terrorist is not concerned with age or innocence. It leaves bodily injury, brain cell destruction and confusion in its path for all close to it.

You cannot rest living with this terrorist called Epilepsy, it’s all you can think about. Even when you aren’t thinking about it, you are thinking about it. Things are no longer up to you. You have no control over the situation or the seizure. The Epilepsy Terrorist feeds on your despair and anxiety while you wait for the other shoe to drop.

I still don't know which seizures are worse, the big ass kicking seizures or the quick drop you to floor seizures. We get both.

I will sleep with one eye open tonight as I listen to the breathing patterns and watch the Doodle’s movements in the glow of our dim night light.