The Hunt

I originally planned a lengthy update for today. The first day time and errands would allow.

I also have a few choice comments on the Questcor issues as well. But that will have to wait.

Between the internet and Austin mood and seizure interruptions, I have been quietly dealing with another issue.

Surgery.

There are very few people I've mentioned this to, simply because I was afraid of the response I would get in the end. I had to hide my vulnerability to this subject.

It took over a month. I emailed Dr. Chugani about Austin's most recent hyps-free EEG (he told me during our visit in March to let him know if there are any changes with his EEGs -notably the hypsarrythmia).

I had the EEG report sent in early August. It took our local hospital exactly one month to fax a paper copy of the report.

During the spotty internet service, I was a wreck knowing that Detroit had received the report and I could not get into my email inbox.

This morning I had this email waiting for me...

Hi; the EEG does not really show any lateralization to either side, but remains diffuse all over the brain. I don't think I can make a case for surgery. However, as Austin evolves out of the spasms into some other seizure types, there are other meds that can be used. Just because a particular med did not work for spasms does not mean it would not work for other seizure types. So keep your hopes up! Are we having lots of seizures now? HC



I felt my heart shatter. We are nearing our Felbatol end (I hope). It is our eighth AED. EIGHTH. Somehow our parting in Detroit in March left me with slivers of hope. He explained how unclear the evidence was (particularly because of the EEG loaded with hyps), but that doors could be opened in a matter of months -when the hyps clear. Which they have. Which did not even open the door a smidgen. Instead it slammed in my face.

I did respond to that email. Told him about the seizures and the behavior that accompanies them. And asked the very stupid question that I already knew, but had to get confirmation from the guru himself. Should we give up on the possibility of surgery in the future?

A very simple and matter of fact I would not pursue surgery. HC was his response.

So there it is. My secret hopes of new developments making a difference rejected.

My heart is torn in different directions. I don't want surgery to be the answer. I don't. I don't want an AED with unreasonable side effects to be it either. I want the Miracle. The Healing. So, in that respect I'm okay. But, the logistical side is crushed. It sees nothing more than the bottom of the barrel.

This struggle comes at a particularly bad time too. Austin's clusters and seizure-related behaviors are at an all time high. Saving the details for later, I will only say that I was desperately yearning for a new option -or even a new hope for a new option this week.

It's not over. Sadly, the surgery hunt is (for a while until something new suggests otherwise in the future), but the miracle hunt is just beginning.