Thursday, March 10, 2011

The 3rd time is NOT a charm*...

I have written several posts over the last few months. Never to be published. I have so much anger and sadness and guilt with this relapse. It's exhausting and consuming. So I'll update as quickly as possible and hopefully this one will be published.

We tried ACTH. It FAILED.

I was worried that with the wean of ACTH (actually we switched to Prednisone for the wean) that we would see a steady increase in her seizures. And, at first, we did. But once we got to a higher dose of Zonisamide, the intensity and number of seizures within a cluster started to decrease. She is still having around two clusters a day. Small clusters. Very mild clusters. But seizures they are. On a daily basis.

So we are still fighting. We have Vigabatrin in the waiting (just received the package yesterday) along with the ketogenic diet (our appt is in April). We just increased Zonisamide on Monday night so we will give that a chance and see what happens.

On a good note. Actually...a GREAT note. We have seen improvement with Sophie's behavior. There has been a lot going on with medications since surgery. After surgery, she was on Dilantin and Depakote. Since her latest relapse in seizures we have...weaned Dilantin, started and stopped Vimpat, reintroduced and weaned Dilantin, weaned Depakote, started and stopped ACTH, started and stopped Prednisone and started Zonisamide. So right now, she is only on Zonisamide. With all that said, I think Dilantin was making her aggressive. And I think Zonisamide is making her calmer. She has been playing independently. She LOVES her iPad. She has been singing a lot lately. She has become attached to a few possessions and seeks them out. I have never seen her do that before. She has a Dora doll with Boots in a pouch, a magic wand and a music box. She'll put all three items in this little shopping cart and push them around. Or she'll just want to hold them while watching TV. I think this is a huge developmental milestone.

And speaking of milestones...we had her IEP yesterday. I PROMISE to update very soon with all the progress she continues to make (despite having daily seizures).

*This was the third time we have tried ACTH. And this is the third time it has failed. I just knew it was going to work this time. And why not?!?! She has had the majority of her left hemisphere removed...including her left frontal lobe where all the seizures were originating from (according to the grids that were placed prior to the resection). So, I just knew that ACTH would be powerful enough to stop the seizures from this small remaining area that is still active with seizures. I was powerful enough to make her gain 6 pounds in less than two weeks, have her face puff up with dark circles under her eyes, have wicked mood swings including roid rage, suppress her immune system, lower her potassium level (she had to be put on a supplement) and so much more ugly stuff. All this for the small sum of $130,000 from a company that has HORRIBLE customer service (and I am just talking about this round of ACTH).


Kerri said...

Oh Elaine, I'm so sorry. I have been following your blog for a while and I am amazed by Sophie's strength. I am so happy to hear about her development. It's amazing how excited we get over what normally would be such a simple milestone. I pray for Sophie and for all of you. Thank you so much for the update.

Sinead said...

So sorry. I am glad to hear that she is progressing despite the daily seizures. I know its not enough. Hoping for better days.

blogzilly said...

ACTH is a good that is turned into liquid evil by greedy bastards. How any drug can be a 'first-line' treatment with an effectiveness rate of MAYBE 50/50 and cost over 25K for around a week's worth of the shit be acceptable to any human being?

I guess it's acceptable to the ones who roll the hard 6 and fall on the LUCKY side of the 50 percent. Good for them. And I mean that. But what about the OTHER 50 percent?

Why is it that pretty much every other product I know of that fails you get a refund? Except stuff like this. I just shake my head. Especially when you think about how much we spend on ACTH, put in the pockets of a bunch of greedy pricks, but taken OUT of a lifetime maximum of the insurance policy on our kids.

And for what?

I'm telling you...somewhere down the line, someone is going to answer for this. Maybe not in this life, but somewhere.

What a crock.

I can imagine what your other un-published blogs felt like. Thanks for updating, and I'm sorry things are going the way they are. I really am.

Holli said...

I have often wondered what would be worse, never getting complete control or facing relapse after relapse. It's obvious we ALL want control, but I can't even imagine how difficult this must be. We've never gotten a completely seizure free day, but for that short week after surgery, I saw the potential. I even let myself start feeling relief that he was SO much better. Then to have it taken away and start all over again. That was almost worse than any low point we've hit since this started. It seems the battle is never over for us.

But I'm so very relieved you are not seeing cognitive declines, but rather still seeing progress. Any new milestone or development (however big or small) always seems to give us enough fire to keep going and fighting. That's what we're fighting for ultimately.

Love ya both...

lisa said...

I hate ACTH so much, of course, if it had worked for us I'm sure I'd sing a different tune. I'm sorry she and you had to go through that without it working.

Anger, sadness and exhaustion sound about right. How could you not feel those things. I am hopeful you will find the solution though, and so glad that in the meantime she is making good progress.

kelley&brandon said...

I have followed your blog for several years now - my daughter Camilla is the same age as Sophie and they were both diagnosed with IS right around the same time so her story is near to my heart and the similarities between the two girls are sometimes uncanny - I cannot tell you how much I empathize with you - I know the emense frustration of having to watch daily seizures, I know the anger of seeing your delayed child play with 'normal children', I know the hate of medication side efffects, and I know the physical and emotional exhaustion of a strong, active child who 'acts out' on a regular basis and I know about trying to balance all this with a spouse and other siblings. I am SO SORRY that you all are having to deal with this - I remember the joy in your posts when she was seizure free and at that time I prayed that that joy would never leave you guys - I'll leave you with a verse that gives me comfort as we are about a month out from Camilla's Corpus Callosotomy - "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future" Jeremiah 29:11 I will be praying for your hope and future - Kelley