Thursday, September 24, 2009

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.

6 comments:

Colby said...

I just felt my heart sink as I read...I can't claim to know exactly how you feel, since Colby has never been a candidate for the surgery...

I can only feel your fear and grief of the future and what it holds for your family...

It is certainly a sickening feeling...I know it so, SO well...And we are on our 11th different Rx as we speak...

All I have been trying to do is keep trying different meds...and, of course, praying for our miracle...

One of my very best friends has a son, 28, who has Angelman's Syndrome...He has had grand mals and partials all his life....Sometimes 90-100 per day....He hasn't had one in over 4 years....They just stopped...for no reason....

So miracles DO happen...That's about the only thing that helps me get through these days...

Take care....And keep hanging in there...

Cyndi

Sophie's Story by Elaine said...

Holli...I am heartbroken. But I still have hope for Austin. I know that I have told you this a million times over...out of all the other IS kids I know, Austin reminds me the most of Sophie. Did I ever tell you that Dr. C told us that Sophie was not a surgical candidate? If not, I will send you some e-mails of our correspondence. Also, have you ever thought about getting a second opinion at Cleveland Clinic? If we didn't have Sophie's surgery at Detroit, we most likely would have gone to Cleveland Clinic.

Whatever you decide to do, I know how hard it must have been to hear that news. ((((HUGS))))

Holli said...

Cyndi -Yes, I'm letting go of surgery for a while. But, I refuse to let go of the possibility of his Healing. It's got to only be a matter of time.

Elaine -You did send me your correspondence with Dr. C. That's what keeps reminding me that tomorrow can always hold a different answer. I will never forget all the advice you have given me after your experience. I guess I just need to wait for more changes to occur.

baby trevor's mommy said...

Oh Holli...I have grown to really deeply love you & Austin over this past year. Which is why my heart is shattered with you. I know how big this surgery drama feels...and is. But...and I say this as a surgery row mom...it is not the end. You are an amazing mom. Passionate. Pro-active. And I know you'll grieve...and then pick yourself up and keep fighting for him. Because that is what we do. And even though you know me and cliches...I really do believe what doesn't kill us makes us stronger. You ARE so much stronger than you know.

xoxoxo

...danielle

Liz said...

So my little tidbit of hope (I too am still deathly afraid to keep hopes of miracles up, but without hope, I've got nothing).....

Maddie tried Zonegran before we had her IS diagnosis and I swore it increased and intensified her seizures. I made her Neuro let me stop it cold turkey. Fast forward nine months, Dr C says we should give it a go again. So we do. And seizures totally suck for the first two weeks. And suddenly we have an almost 90% seizure reduction. I am still afraid it is a honeymoon effect, so I'm afraid to get too excited yet. But every once in a while, I think drugs may work.

And I'm glad to know y'all are ok.

blogzilly said...

I'm really sorry. Sorry that you got that as an 'answer', sorry things aren't getting better.

DO NOT GIVE UP. DO NOT GIVE UP HOPE.

Elaine was a fighter, she told me lots of stories about how she had to fight and kick and scratch to get through the next steps, and I believe her.

There's gotta be a way. I refuse to believe otherwise. There has got to be new roads that can open up.

You're in my thoughts.