Tuesday, July 28, 2009

The Good, The Bad, and The Cute!

You're all caught up on the good news we received in Houston last Friday. No hyps! Yay!

But, I did mention there was some alarming news we learned too. The bad.

I haven't been able to get into it until now. I didn't want to put a damper on the good.

So, here it is.

Our epilepsy specialist dropped the bomb. The one I've been dreading to hear for about a year now. Ever since I started suspecting that Austin was having atonic seizures instead of just single, isolated myoclonic infantile spasm seizures.

It was...

The L word.


Lennox-Gastaut Syndrome.

It's a seizure disorder too, just like Infantile Spasms/West Syndrome. It has it's own triad of symptoms too. In order for a diagnosis of West Syndrome (what we've been dealing with -I don't usually refer to it as West Syndrome) to be made, the child having the infantile spasm seizures must have the following: the infantile spasms, of course, an EEG pattern of hypsarrythmia, and developmental delay. In order for LGS to be diagnosed, the child must have multiple types of seizures (typically atonics and tonics and usually resistant to AEDs), have a distinct EEG pattern, and cognitive impairment.

All kids with IS are at a higher risk for developing LGS. Kids who have developed different seizures on top of the infantile spasms are at an even higher risk. Those who have had unsuccessful treatment of those seizures over a long period of time...the risk is even higher.

Austin does not have LGS. BUT, our epi feels quite strongly he is headed in that direction. So, while the hyps-free EEG was good, the fear of another disorder around the corner is looming. It has been a fear of mine for a very long time. As soon as I learned of it and learned about it, all I could do was hope and pray that this would not be our fate.

He does not have the EEG pattern, but he is in the highest risk category he can be in at this point. He also does not have tonic type seizures either. But, he does have the atonics. A very bad sign, according to the epi.

Although he did say that LGS is just another name for another disorder and it wouldn't necessarily mean it would be worst case scenario of LGS, it scares the life out of me. Some kids with it fare well. Others. Not so well.

I haven't heard many positive stories about this syndrome. That doesn't help the fear factor. Fact is, I try to avoid looking it up entirely. And I've been that way for months. Fearing if I knew too much, I would realize it's a very possible future for us. Because he meets several of the diagnostic criteria already. My mind doesn't like to go there. Worrying about another disorder before we've even tackled the first. One thing at a time is the only way I can handle this. But, he said it out loud Friday. There's no more pretending I'm ignorant to it.

But, what can I do about it? Nothing really. Hope, pray, and love him through this. Concentrate on today before I know what tomorrow holds. Although my dreams of beating this IS and continuing on with our lives seizure and disorder free get a little fuzzy sometimes. With multiple interruptions now in my mind containing a bold LGS flashing brightly in my line of vision. All the while, constantly trying to push it aside and remind myself TODAY. TODAY. Not tomorrow. A tug of war in the brain so to speak.

So, that's what I'm working on. Today. Today, he is a happy, squealy, lively new child. There is a new light in his eyes. One that should not be dimmed because of my fears. Of what has yet to happen.

And, so, with that...(And to end this on a good note)

I give you...


The past week or so has revealed, little by little, the Austin I remember. It's been months since I've seen this personality of his that, honestly, I almost forgot existed. He's been hiding beneath this hazy cloud of medicine. Slowly, it's lifting. Each day he is being released to me just a little bit more. I can't even begin to imagine what I might see if there were no more seizures stealing their own piece of him.

I know this alertness may only be temporary. There will be new med trials to come...all bound to have their own side effects. But, this possibly temporary phase has given me exactly what I needed. It lights a fire under me again. Because I see now that the Austin I knew is not really gone. He's still in there. Waiting to be saved. And it gives me the strength to keep pushing. And this is just a glimmer of who he really is in there -under the medicine cloud. I don't want just a taste of how he should be. I want all of him back again.


baby trevor's mommy said...

Oh sheesh...I'm just a blubbery mess tonight!

I seriously love how you open your heart. Love it!

And gosh do I remember how emotionally devastated I felt when Dr. Boston told us that Trevor had LGS. He said he didn't need to wait for the EEG to come 'round. And it gutted me.

I'm not sure if you know who Mike Bartenhagen is? His son Broc has LGS. He's a great dad...and friend. He emailed me after we got that news and told me that it's really just a new label. And that nothing changes. But of course...it takes time for the heart to move there. He's quite a bit ahead of you...and me.


I love you, hon. Thoroughly! You are an amazing mommy. Good grief...I mean what are you like 24ish? How many 20-somethings out there could handle this with as much grace...and strength...and faith...as you do? You are an inspiration! And so is your little man! I could eat you both up!



Sophie's Story by Elaine said...

Okay...did Austin really pass out in the ball pit??? He is TOO ADORABLE...makes me want to drive to Texas and scoop him up in my arms and give him big hugs...you too. You are from Texas, right?

Sophie was given the LGS dx. But I feel it was just a label for her. Too old for IS and no way other to label it. She didn't have the EEG pattern. Just multiple seizure type. It meant nothing to me. Just kind of pissed me off. I felt just because there was no other category to put her in, the epi felt the need to dump the LGS dx on us. I remember the next pediatrician appt Sophie had after the dx. The ped walked in and looked at me with this sad look on her face and started out with saying I'm so sorry about Sophie's new dx. At first I didn't know what she was talking about and it scared the heck out of me.

But I remember when Sophie was first dx with IS and for quite some time after that, I was scared of the LGS dx.

Anyway, I have so much more to say to you but I am so incredibly tired. I'll e-mail you when I get the chance.



blogzilly said...

I'm a bit speechless and confused, not just by your post but by Danielle and Elaine's follow-ups. I didn't know both of you had heard that diagnosis as well. Seems very tossed around, the phrase.

My brain is mushy and tired so I am not thinking clearly, so let me just say that I love your attitude regardless of what the epi said or suggested. Such a positive, constructive force of nature you are.

Holli said...

Danielle -haha, I wish I was 24ish!!

Anyway, I do remember when you got that news. It's strange because Trevor doesn't even have multiple types of seizures, does he? Or the EEG pattern. Why the heck would he try to make that dx?

And, thanks sweetie, you're an incredible mommy too! Gosh, I only wish I had the strenth and patience to take on what you have. One kiddo sucks me dry!

Elaine -Yep, we're in Texas. And, yep, he passed smooth out in the ball pit. During OT. Our therapist said it was likely from all the sensory stimulation. And he was already so tired on top of that. Cutest thing I've ever seen though!
I had no idea they told you Sophie had LGS. I can understand you being pissed about it. I would be too, especially because it seems like a forced dx.

Ken -That's exactly what I was thinking when I read their comments. I had no clue it was so easy to make the dx. I thought the EEG pattern was vital. I guess like Elaine said, once they grow out of the infantile spasm category, there's a need to re-label it somehow. Makes me feel quite a bit better about it actually.