We (meaning Dr. Neuro in tandem with J & I) chose not to use a safety drug (like Topomax or Zonegran) after Trevy's first course of ACTH. His seizures stopped so quickly...after just four injections. That was a good sign. And even though we wouldn't speak the words for fear of jinxing...we were all filled with Hope. Of course his persistently abnormal EEG always kept us guessing if it was the right move.
Actually...Dr. Neuro recently told me she always regretted not extending Trevor's ACTH trial the first time. To see if perhaps his EEG would clear completely.
She's not the only one second guessing. Because of course I wonder now if it would have made a difference. Adding a safety net. Maybe Trevy's seizures would have stayed in remission? But at the time...the side effects involved with the drugs felt heavier. And I didn't want to contribute to Trevy's developmental challenges. Every drug comes with the risk of inhibiting that very area.
So we opted out.
Until we were shoved back into the world of AEDs. About two months ago.
It struck me today as I was watching Bristel & Trev playing together. She was bossing. He was tossing. And it hit my heart like a ton of bricks. How happy Trevy is. I didn't realize just how much of his personality was stolen by ACTH. But now...two weeks from the last injection...Trevor is a totally different kid. Cranky & Clingy have morphed into Happy & Clappy. In spite of 40+ seizures daily...not that I'm counting mind you!
::wink::
He's not just happy either. He's also making developmental strides! Consistently babbling for the first time ever! And mimicking sounds. New sounds! It's been amazing. And the truth is...he is happier & more there than he's ever been. It's like the fog has lifted.
All those abnormal-EEG months I thought I was doing the right thing by not using a safety med. I was so afraid to rock the developmental boat.
Only to be here today. With Trevy almost maxing out his Zonegran dosage. And yet doing so good. It makes me wonder if the Zonegran is at least dulling enough of the epileptiform activity to allow the fog to part just enough for Trevy to gain new skills? Which in turn makes me wonder where he'd be today if we had chosen to use a safety?
But life is not like those "choose your own ending" books that I loved as a girl. We do our best to make the right choices. And then continue to live. And besides...I don't think anyone can really know for sure. Maybe this sudden happy & forward spell is just a fluke? Maybe he would have hit a developmental growth spurt anyway? Maybe the fog will fall again?
But it's enough of something...to make me feel like this is one time I won't look back on & wish I could re-choose.
(I always feel inclined to add a filter to my thoughts. Probably because I've randomly received criticism. But at any rate...this post is in no way an attempt to persuade any parent to use an AED. As always...this is simply my journey. As told by me. Filtered through my heart's experience. And again...as always...I encourage everyone to follow their own.)
13 comments:
First, I think it's really sad that you have to add a filter. Blogging is sacred to me because it's my thoughts, unfiltered, just me...and that's the way it should be for all...your safe place to be open & free. ~ Okay, enough of that rant! Sorry!!~
Isn't it wonderful to see hope become reality in Trevy's smiley face, happy play and chatting voice?! What a beautiful day to witness such growth and change!! Go Trevy Go!
We always do the best we can in that moment. That's all we can do. Trevy is blessed to have a momma who thinks things through so thoroughly and doesn't give up.
Bless you both.
M
Answered Prayers!!! Bwana atukuzwe!! I am so happy for you all and for Trevor. We are continuing to pray for his development here and we know God is in control. Love you all bunches, Mom
I second, M. Unlike my coffee, I like my blogging unfiltered. No holds barred!!
Can I get an AMEN!!?? Also, second M. Trevy is so lucky to have a warrior mama!
You just have to do the best with the info you have at the time. Hind site is usually 20/20, but with ep, there's no telling. All that matters is today. Today he's happy, he's showing growth...just look at him! He looks fantastic. Who's to say that the 2nd round of ACTH didn't do something to his brain that can't be seen with a test?
That was our dilemma with ACTH. We know it did terrible things while she was on it. The side effects far out weighed the sz at the time, but who knows if it paved a way for the Topa to work better? All I know is that Kay is doing fab and making progress today and hoping she will continue tomorrow and the next day.
Wish I knew where to find that magic wand and crystal ball!! That would make all our lives easier. *wink*
Much love,
Shanna
P.S. Your girlfriend says *wave* hi ;)
we never experience the ACTH crankies but I am so glad Trevy is past them!
So where do you go from here... med wise? Are you going to try the Vig next?
M...I know. I totally annoy myself for filtering...or feeling the urge to filter. Ugh...it's a firstborn thing. People pleasers we are! *wink* Anyway...it is tangible joy seeing Trevy smile. And especially watching his little face light up when he makes a connection with something...that sends us over the moon! He LOVES praise!
TZ Mom...we feel your prayers!
Shanna...if you find that crystal ball ship it my way! *smile* And your coffee ref...sent me to warm up the mornings leftovers! lol
Jen...sooooo Trev had labs done today. I feel stupid for not knowning they could test his Zon levels with bloodwork! *rolling eyes* I think Dr. Neuro wants to give the Zon another week...and then we'll move onto Vig. I'm not sure if we'll stay on the Zon tho. I'm not sure that I want to wean him...because I'm really not sure if it's helping or not. It's one of those things that I'd hate to wean him...and see BIG seizures. I'd rather just go ahead and keep him where he's at...add the Vig...and give it awhile before making any more changes. I think there has been some debate on wether to treat the clinical seizures or the EEG presentation. Altho from what I've read Vig is good for spasms & myoclonics? But then I thought they were in the same family anyway?
...danielle
I'm curious about why the neuro would want to wean the Zonegran before trying the Vig? I suppose there is some theory behind trying one med at a time, but since he's already on the Zonegran it makes sense to me that you would just add the Vig and see. I'm no neuro though... Anyway, I'm so glad to hear that Trevor is happy right now. I'm sorry that you are feeling the "what if's". I'd like to say don't go there, but I can't cause I do that too! One thing I know for certain, you make the best possible choice that you can each and every step of the way for your baby. A boy coulden't ask for a more loving Mama.
Here are my personal... non neuro thoughts. Check the Zon level, take Zon to it's max dose. If it's not working back off a little, give it a week or so THEN add Vig. Personally I wouldn't want the Zon maxed out when you add another. Is he having any noticeable side effects from the Zon?
Vig does work for myos and IS, or at least that is my understanding. IS is essentially a type of myo.
With Austin, we always treated the EEG, because it dictated his development. Even when he wasn't seizing, when he had a bad EEG, he was still 'off'. The neuro agreed we'd treat the EEG to see if it helped, and it did.
Ok, my personal 2 cents!
Karen...Dr. Neuro hasn't mentioned weaning the Zon. That was just me thinking outloud. Because we're not sure if the Zon has helped Trev's seizures at all. He's having too many to really count each day...although many of them are very mild. The big ones really seem to be myo in nature. Just several quick jerks in a row. But very strong. Anyway...ugh...all this decision making & loving stuff...wears me out! *smile*
Jen...he's tolerated the Zon very well. When we up his dose we do notice that he's a bit groggy & stumbly. But otherwise no effect. He's even eating like a champ! I was worried about the whole weaning ACTH plus Zon factor. Last time we weaned ACTH Trevor nearly stopped eating! But anyway...it's diff this time so that's one less worry.
I'm really hoping the Vig does the trick!
...danielle
Karen...Dr. Neuro hasn't mentioned weaning the Zon. That was just me thinking outloud. Because we're not sure if the Zon has helped Trev's seizures at all. He's having too many to really count each day...although many of them are very mild. The big ones really seem to be myo in nature. Just several quick jerks in a row. But very strong. Anyway...ugh...all this decision making & loving stuff...wears me out! *smile*
Jen...he's tolerated the Zon very well. When we up his dose we do notice that he's a bit groggy & stumbly. But otherwise no effect. He's even eating like a champ! I was worried about the whole weaning ACTH plus Zon factor. Last time we weaned ACTH Trevor nearly stopped eating! But anyway...it's diff this time so that's one less worry.
I'm really hoping the Vig does the trick!
...danielle
I know it's so hard not to second guess yourself, but in my opinion i think Trevy has the best mommy in the world and you went with what felt right at the time. i too wish our lives were the pick the ending books. i think I would definitely be altering some endings in mine! As far as your filtering the blog, I think it's sad that we feel that we must do it. I'm guilty of it too, but i've made the decision today ...no more!!! That is my blog, a place for me to vent...if it's offending someone too bad, they have the choice not to come on there anymore. I love your honest thoughts! They make me feel like I'm not the only one with a huge range of emotions on life. Take the filter away, and just let it rip!!!
About your concerns with the eating, and you may aleady know this, the ACTH is a different ballgame than the Zonegran. The Zonegran can actually be an appetite supressant, while the ACTH is obviously the opposite : ) As you know, KC stopped eating when he came off the ACTH and we had to get a gtube. The neuro was cautious about putting on the Zonegran because of the appetite suppresant qualities. Long story short, if you do think weaning Zonegran is right for Trevor I woulden't worry about him not eating during the wean. If anything I would think he'd eat more. Totally not trying to sway you one way or another, just thought I'd share my experience. Good luck. I know this is such a hard choice. I'm sure either way you will do the right thing.
Karen
Way to go Trev! I know you are thrilled to hear the babbling! It would be music to my ears if Austin would start that back up!
I was seriously thinking the Zonegran was inhibiting Austin's development some...but, he's suddenly starting to come around a bit more. Pushing buttons, trying to figure out toys...never thought that would be such a big deal!
Second-guessing is something I know all too well. Unfortunately, we don't have that crystal ball to make all the right decisions, and the "what-if-I-would've..." will break you down. I, for one, can tell how dedicated you are to Trevy, and nothing is stronger than your Mommy's instinct!
AMEN shanna! loving the unfiltered AND hope-filled post! hugs & kisses ur way!
sharon
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