Tuesday, June 12, 2012

PICU update

Pumpkin was released yesterday afternoon. All in all, the hospital stay was rather uneventful.

In retrospect, I don't fault anyone at the hospital for reacting the way they did. Pumpkin was incredibly non-responsive in the ER. She wouldn't look at anyone. She wouldn't talk. She just plain didn't react to anything. The doctor took one look at a severely disabled foster child and needed to cover all his bases. Even if she had had an ear infection, that wouldn't fully explain how zoned out she was.

However, the seizure activity her neurologist says was occurring does explain everything. I personally never saw a single seizure. But when her neurologist checked in on us yesterday, he told me that any time I see her balance off like I described it to him, I am to assume seizure! He also pretty much told me to expect more of this out of Pumpkin.

So now I know how else her seizures can look. I might not see a single one of them – but she's having them all the time. The doctor said that her brain scans are very, very abnormal. For the most part the abnormal brain activity is on the left side. Sometimes it's on the right. And sometimes the whole brain will fire at once. (This is how the doctor described things.) And basically, my Genius Brother told me awhile ago that the difference between "abnormal brain activity" and "seizure" is little more than an arbitrary line drawn in the sand.

Without any extra treatment for seizure, Pumpkin started to recover yesterday. She's still not as verbal as she was a few weeks ago. And I'm not completely convinced this wasn't tied to the increase in contact with her mother. But she's doing better.

Her neurologist said that we need to adjust her medication. So, we are. I really pushed him for a connection between the regression and seizures to the visits with Mom.

His answer was very clinical. He said, after I really questioned him, that the verbal regression could be an emotional response to the stress. But his response to the seizures was, "you and I have stress and we don't have seizures".

While standing next to him in the hospital that all made sense. Once I got home though, I can manipulate that statement.
I have a suppressed immune system due to the medications I'm on. I have a cold sore virus permanently in my body. When I'm under stress – I get a cold sore. If you don't have the virus, of course you won't get a cold sore.
I have psoriatic arthritis. When I'm under stress my body swells up horribly and I flare. If you don't have arthritis, of course you won't have an arthritic flare.
Pumpkin has epilepsy. Surely there are environmental things that can cause her epilepsy to "flare"??? I don't have epilepsy, so of course I'm not going to respond to stress by having a seizure.
Either way, I know how to treat Pumpkin when this happens again. I won't be going to the ER. I will give her a drug for break through seizures. Unsupervised visits have been stopped with Mom. I asked if it's necessary for her to have the supervised visits. I do believe they are horribly stressful for Pumpkin and you can't convince me they are in her best interests!! And, if this case is actually going to change now due to the abuse a week ago (which it should), they certainly aren't necessary. I'm praying like crazy that all the powers that be will do what it takes to keep Pumpkin safe!!

1 comment:

Mie said...

As an example - flashing lights have been known to trigger seizures in individuals who experience them at a particular frequency. Though individuals not known to have epilepsy experience the seizures, the incidence is much higher in those that are epileptic. Just one example of an environmental influence that can trigger seizures specifically.