Posted Thursday, July 26, 2007 - 22:00 by Anonymous
Lots has happened since my last blog. My grandmother’s birthday party was a complete surprise to her, even though I had my doubts. How do you keep fifty family members from accidentally spilling the beans? Somehow, though, it came off without a hitch. The only problem we had was that Thomas and Jonathan missed the surprise because Thomas was concerned with the fact that we had left our car on the next block. He kept wandering over there and Jonathan had to follow. Once the surprise was over, I moved the car to our usual Uncle Tom’s House parking spot and Thomas settled down. Again, the kids swam until it was dark. We had a really good time and Grandma was very surprised.
We visited the neurologist again last week and we chatted for a while about Thomas’ nighttime antics. The Clonidine is still not keeping him asleep like the doctor thought it would, so we talked about exactly what he does when he gets up in the night. After thinking for a moment, the neurologist asked that we bring Thomas for an EEG (electroencephalogram), when they put stickers and wires on his head while he’s sleeping and wait for something (a seizure) to happen. The doctor was concerned, after I told her about how Thomas wet his bed several times in one night and seems to have a “lights are on but no one’s home” look about him when he wakes, that he is having seizures. I’ve been asked many times before if Thomas has seizures, but I wrongly assumed that seizure behavior is passing out and writhing on the floor for a few seconds. After educating myself with the pamphlet entitled “Understanding Epilepsy” that the doctor provided, I’ve learned that seizures can be a blank stare, slight twitching, a single severe muscle spasm and other things I had never thought of as “seizure behavior”. Once she gave me that particular piece of literature, a red flag was raised: So Thomas could have epilepsy ON TOP OF autism? Swell! Let’s keep those diagnoses comin’! By the way, I gave the neurologist the studies on Namenda/Memantine, and she remains unconvinced that there is enough information available on the drug for use in children with ASD. I’m not sure what to do next…how much money would I need to bribe her, I wonder? Maybe I should turn these requests into a singing telegram. I can bring balloons and my tap shoes next time and wear an ape suit.
Thomas may not have epilepsy, in fact; the doctor wants the EEG just to make sure that epileptic seizures are not to blame for the sleeping problems. So if Thomas has the EEG and it’s abnormal, then we come back for a consultation with the neuro. If the EEG is normal, then she wants him to do a sleep study. I’m so excited for these tests that I can’t even express it in words!
Not.
The preparation for an EEG is horrific. I mean, if I was the one who had to have the test, it would be no big deal. The fact that I have to prepare a four-and-a-half year-old autistic child for it absolutely curls my hair. The whole idea of this test is to get a look at the brain waves while Thomas is sleeping, so sleep deprivation is key to the success of the EEG. The person on the phone instructed me to put Thomas down for bed at the normal time and then wake him at 1:30 a.m. (in the morning, in case you missed the “a.m.”) and keep him awake until the test which is scheduled for 10:45 a.m. Trying to get him to stay awake in the car on the way there is going to be a scream! Jonathan is taking that day off work so that one of us can drive the car while the other entertains Thomas. If we can just get him to stay up all that time, the test should go fairly smoothly. Of course, I’m going to need someone to keep me awake all those hours. Everyone’s sleepschedule is going to be completely screwed up. I already know exactly what’s going to happen. Our whole family is going to be up at 1:30 a.m. like a bunch of vampires.
The main thing is that I really don’t know what to hope for in all of this. Like, what are the best-case and worst-case scenarios? How can the best-case be that Thomas has epilepsy? That’s just silly. Then again, if he doesn’t have epilepsy, we have to dig even further and do a sleep study (again, my hair is curling just thinking about that) and continue to grab at straws. Then, they may want to do an all-day EEG where I have to get Thomas to walk around like Frankenstein for twenty-four hours with a mobile EEG pack around his waist and wires sticking out of his head. What should I hope for? This may sound horrible, but I would be fine with it if Thomas has epilepsy. My best friend has epilepsy and she’s completely normal with her daily medication. If epilepsy would help us pinpoint Thomas’ sleeping problems, fine. So we’re beginning another journey to possible diagnosis, and possible nothing. This whole thing may lead us to no answers at all. “Yeah, your son has sleep problems. We can’t figure out why. That’ll be nine zillion dollars. Have a nice day!”
Yeah, yeah, I’ll try to stay optimistic. The EEG is scheduled for August 16th.
Otherwise Thomas has been pretty good. We’ve gotten Hayley almost completely potty-trained, so we’re done with diapers! She sometimes doesn’t make it through the night without wetting the bed, so we’re putting her in a diaper at bedtime (okay, so not “done-done” with diapers, but pretty close). In the morning, bless her little heart, she gets up and goes to the bathroom all by herself without waking me up! She’s doing a great job (even with #2!) and we’re so proud of her. Thomas is obsessed with our cars (again or still?) and demands that I pull our truck in the garage in the morning so he can look at it and get in and out of it. He enjoys it and it’s not hurting anyone, so I let him do it. He has been talking about how he wants to be a racecar driver, which is cute. Today he wanted us to go to the “car store” and buy a Toyota Highlander like the one my dad drives. I told him that I don’t have enough money to buy one and that they cost around forty thousand dollars. Thomas remained firm in his desire despite my silly lack-of-funds problem. He’ll just have to wait for Grandpa to work on our boring old Suburban again so we can borrow his car.
Twitter
Facebook
By Email
RSS Feed
Lots has happened since my last blog. My grandmother’s birthday party was a complete surprise to her, even though I had my doubts. How do you keep fifty family members from accidentally spilling the beans? Somehow, though, it came off without a hitch. The only problem we had was that Thomas and Jonathan missed the surprise because Thomas was concerned with the fact that we had left our car on the next block. He kept wandering over there and Jonathan had to follow. Once the surprise was over, I moved the car to our usual Uncle Tom’s House parking spot and Thomas settled down. Again, the kids swam until it was dark. We had a really good time and Grandma was very surprised.
We visited the neurologist again last week and we chatted for a while about Thomas’ nighttime antics. The Clonidine is still not keeping him asleep like the doctor thought it would, so we talked about exactly what he does when he gets up in the night. After thinking for a moment, the neurologist asked that we bring Thomas for an EEG (electroencephalogram), when they put stickers and wires on his head while he’s sleeping and wait for something (a seizure) to happen. The doctor was concerned, after I told her about how Thomas wet his bed several times in one night and seems to have a “lights are on but no one’s home” look about him when he wakes, that he is having seizures. I’ve been asked many times before if Thomas has seizures, but I wrongly assumed that seizure behavior is passing out and writhing on the floor for a few seconds. After educating myself with the pamphlet entitled “Understanding Epilepsy” that the doctor provided, I’ve learned that seizures can be a blank stare, slight twitching, a single severe muscle spasm and other things I had never thought of as “seizure behavior”. Once she gave me that particular piece of literature, a red flag was raised: So Thomas could have epilepsy ON TOP OF autism? Swell! Let’s keep those diagnoses comin’! By the way, I gave the neurologist the studies on Namenda/Memantine, and she remains unconvinced that there is enough information available on the drug for use in children with ASD. I’m not sure what to do next…how much money would I need to bribe her, I wonder? Maybe I should turn these requests into a singing telegram. I can bring balloons and my tap shoes next time and wear an ape suit.
Thomas may not have epilepsy, in fact; the doctor wants the EEG just to make sure that epileptic seizures are not to blame for the sleeping problems. So if Thomas has the EEG and it’s abnormal, then we come back for a consultation with the neuro. If the EEG is normal, then she wants him to do a sleep study. I’m so excited for these tests that I can’t even express it in words!
Not.
The preparation for an EEG is horrific. I mean, if I was the one who had to have the test, it would be no big deal. The fact that I have to prepare a four-and-a-half year-old autistic child for it absolutely curls my hair. The whole idea of this test is to get a look at the brain waves while Thomas is sleeping, so sleep deprivation is key to the success of the EEG. The person on the phone instructed me to put Thomas down for bed at the normal time and then wake him at 1:30 a.m. (in the morning, in case you missed the “a.m.”) and keep him awake until the test which is scheduled for 10:45 a.m. Trying to get him to stay awake in the car on the way there is going to be a scream! Jonathan is taking that day off work so that one of us can drive the car while the other entertains Thomas. If we can just get him to stay up all that time, the test should go fairly smoothly. Of course, I’m going to need someone to keep me awake all those hours. Everyone’s sleep schedule is going to be completely screwed up. I already know exactly what’s going to happen. Our whole family is going to be up at 1:30 a.m. like a bunch of vampires.
The main thing is that I really don’t know what to hope for in all of this. Like, what are the best-case and worst-case scenarios? How can the best-case be that Thomas has epilepsy? That’s just silly. Then again, if he doesn’t have epilepsy, we have to dig even further and do a sleep study (again, my hair is curling just thinking about that) and continue to grab at straws. Then, they may want to do an all-day EEG where I have to get Thomas to walk around like Frankenstein for twenty-four hours with a mobile EEG pack around his waist and wires sticking out of his head. What should I hope for? This may sound horrible, but I would be fine with it if Thomas has epilepsy. My best friend has epilepsy and she’s completely normal with her daily medication. If epilepsy would help us pinpoint Thomas’ sleeping problems, fine. So we’re beginning another journey to possible diagnosis, and possible nothing. This whole thing may lead us to no answers at all. “Yeah, your son has sleep problems. We can’t figure out why. That’ll be nine zillion dollars. Have a nice day!”
Yeah, yeah, I’ll try to stay optimistic. The EEG is scheduled for August 16th.
Otherwise Thomas has been pretty good. We’ve gotten Hayley almost completely potty-trained, so we’re done with diapers! She sometimes doesn’t make it through the night without wetting the bed, so we’re putting her in a diaper at bedtime (okay, so not “done-done” with diapers, but pretty close). In the morning, bless her little heart, she gets up and goes to the bathroom all by herself without waking me up! She’s doing a great job (even with #2!) and we’re so proud of her. Thomas is obsessed with our cars (again or still?) and demands that I pull our truck in the garage in the morning so he can look at it and get in and out of it. He enjoys it and it’s not hurting anyone, so I let him do it. He has been talking about how he wants to be a racecar driver, which is cute. Today he wanted us to go to the “car store” and buy a Toyota Highlander like the one my dad drives. I told him that I don’t have enough money to buy one and that they cost around forty thousand dollars. Thomas remained firm in his desire despite my silly lack-of-funds problem. He’ll just have to wait for Grandpa to work on our boring old Suburban again so we can borrow his car.