Thursday, December 13, 2007

"Acceptance" is NOT the Same as "Giving Up"

Stacy over at The Preemie Experiment asked about “Settling In.” You may wish to call it “Acceptance.” When do you “admit” that your life is not “normal” and it’s “OK” (that’s it’s not normal)? I’ll post an abbreviated version over at TPE but I decided to explore it here, more fully, based upon our “latest” shoe-dropping event with our youngest developing a seizure disorder.

I’ve always felt that there was a fine line between “acceptance” and “giving up”. I never wanted to say, “would of, could of, should of.” So, tying in with alternative therapies, we tried a ton of interventions with our preemies. Especially in the autism arena. We did diets, supplements, chelation, Wilbarger protocol, physical therapy, occupational therapy, early intervention, etc. I still belong to several on-line groups and I follow the “latest” break throughs because I have not given up. But, for the most part, I have accepted that my life, basically, sucks. DH and I have a depraved sense of humor and maybe that helps.

My youngest DS, by one minute, has decided to develop a seizure disorder. The school called us about a month ago describing what sounded like seizures. We dutifully made a trip to the pediatrician who agreed with all involved. Now, DH and I have never seen one of these seizures. They are only happening at school and by the time I get there, the seizing is finished. But, the teacher, speech therapist, principal and para-pro (that’s “teacher’s aide” for the uninitiated) have all witnessed them. We log the seizures and report them to the doctor.

Since we have the “world’s greatest” health care here in the United States, we are, of course, on a waiting list. We can see the pediatric neurologist in February. We did get an EEG (boy was THAT fun!) done a couple of weeks ago and we have an MRI scheduled for the day after Christmas. (Hey, I’m not doing anything.) I’m torn between wanting the tests to show “something” and for them to show “nothing.”

Early this morning, 2:32 a.m. to be exact, DH and I were woken out of a sound sleep by what sounded like a huge temper tantrum from DS. He was screaming, crying, stiffening, arching, hitting himself, tightening up his stomach muscles, grunting, etc. Of course, we have cathedral ceilings and it was just echoing through out the house. These “tantrums” would cycle. The behavior would last for a few minutes, then it would stop and he would start to drift off to sleep. And, it would start again. I knew it wasn’t a tantrum because he wasn’t pushing me away or kicking me, which is his typical behavior when tantruming. He id not have a fever. Finally, I called the doctor at 3:00 a.m. That’s the first time that I’ve called in the middle of the night in 10 years. I wanted to know if I could treat this as pain and give DS some Tylenol. We checked DS out for a few “bad” things and then got the blessing to administer Tylenol.

Now, while this was all going on, DH and I sat on the couch and brain stormed what could be wrong. Kidney stones? Couldn’t be an ear infection, he’s never had one. Teeth? He was just at the dentist. Stomachache? Constipation? UTI? We very calmly and rationally ran through a list, discussing the pros and cons while we tried to comfort this screaming child who is non-verbal due to autism. Finally at about 3:30 a.m., he settled down and went to sleep. Whether the Tylenol helped, I don’t know. We kept him home from school today.

While I was trying to get back to sleep, which in my situation takes all of 5 minutes due to sleep deprivation, I wondered about his seizures. I have a friend who has grand mal seizures. Huge nasty things where he bites people and hurts people if you physically get too close to him. Law enforcement has been involved on occasions when the dispatcher has sent the police rather than a paramedic. He has no memory of what he does nor can he stop it while he’s engaged in the seizure. So, I wondered, could a seizure in a toddler manifest itself as a tantrum?

This morning, I “Googled” toddler seizures and found this:

Gelastic seizures are brief outbursts of emotion, usually in the form of a laugh or a cry. They may be accompanied by forced eye movements, chewing or grinding the teeth, tonic posturing, and clonic jerking. The person may appear confused and/or dazed during and after an episode. Gelastic seizures usually last 5 to 60 seconds. The person may remember them clearly or may be completely unaware of what occurred.Gelastic seizures are both unpredictable and unprovoked by the person's surroundings. They are abrupt in onset and quickly over. Gelastic seizures may occur nocturnally, waking the person from sleep and leaving them exhausted.Research shows that gelastic seizures often occur in people who have a (often maternal) family history of migraines.Dextroamphetamine, primidone, and phenobarbital, sometimes in combination, may be prescribed to control gelastic seizures.

Wow. I have migraines. The seizures described by the school last 5-10 seconds. He rolls his eyes back in his head. He arches and stiffens. He also has inappropriate laughter.

Now, I ask you. How many parents could sit, debate and brain storm their child’s situation at 3:00 a.m., briefly consider a grand mal seizure masked as a tantrum, go back to sleep, and follow up with it on the internet the next morning after all the kids had gone off to school, if they had NOT “settled in” or “accepted” their children’s disabilities? Or maybe I’m just the cold hearted b*tch that the family wants to make me out to be. While my life does “suck” for the most part, it does not necessarily “suck” to be me. I think there is a huge distinction.


At December 13, 2007 at 9:11 PM , Blogger Suzanne said...

Wow---my daughter was diagnosed last Saturday with autism, and we are looking at an EEG and MRI. The Gelastic seizures sound just like her. She will be walking across the room and all of a sudden start laughing or crying, for just a bit, then take up where she left off. Thanks for teaching me the term--another thing to ask about at medical appts.

At December 30, 2007 at 8:23 PM , Blogger Mommakitten said...

I just happened across your profile and I wanted to let you know that your family is in my prayers. We have a set of twins micro preemie, and Nate has been doing just fine, yet Aiden has been going through so many obstacles. I know how it is to still have problems after NICU, I can only imagine how it is with your 4 little guys. As I said you are in my prayers and if you need to talk preemie mom to preemie mom, I am new at it all but I am an ear that will listen and a heart that will care.

Momma Kitten

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