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:
- He screams out, usually--but not always
- His breathing gets heavier and deeper
- His body stiffens up
- 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.
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 !