June 22, 2010

>> Tuesday, June 22, 2010

5 or 6 events.

The reason I have no clue if it's 6 or not is simply put: Absence seizures are difficult to ascertain. I THINK he had one during breakfast but I am not too sure so...there's a question mark.

He had 2 T/C right after he went to bed, and then 2 more in the morning, he followed that up with a drop, landing against the wall. I want to take him to the ER but what would they do? They would just look at his history and as soon as they saw: Generalized, they would tell me I should try the Ketogenic diet.

I am beyond frustrated, I cry everyday, and there is NOT ONE medical professional who gives a damn.

I resent 'perfect children' and their parents who complain about a teething baby keeping them awake. I find I just want to scream at them to stop complaining and creating drama...it's just TEETHING. I hate this space I am in, I hate the space Bug is in more than anything. I know that it's depressing to hear about his troubles, I know that people with healthy children don't want to think about it. But I have nothing I can do to help my son.

I can call, but if they are unwilling to accept that call, then I call someone else. I have been this route a few times, I am not new to this game, I know what comes next. I hang up the phone crying, again. It feels so pointless, and so very depressing. There is no point in yelling at the phone operator, what can SHE do? If I can't talk to the Doctor...then I can't get him in sooner than September.

I feel like I am watching him die. He spent an hour sitting on me this morning, after the drop. He was barely there, that awareness in a person's eyes, was on automatic pilot, he was not interacting, he was spinning intermittently. And then he would stop, I would think: Is he going to seize? But he would lay his head on my chest and just breathe deeply.

We really are invisible.

1 comments:

Brandonsrecovery June 23, 2010 at 11:53 PM  

I suggest starting him on a Mucus free diet and joining the Autism-Mercury group.

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Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

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