but I am anyway.
I just hung up with Dr. Neuro...
she had a chance to look at the VEEG from the other day
(don't ask me which...cause seriously...I haven't been sleeping & couldn't tell you)
without a doubt Trevor's IS is back.
She still wants to hook him up tomorrow to gather more data...
but there is NO doubt.
She mentioned ACTH. And possibly Topomax?
I don't know.
I hate that we have to choose. I hate all the second guessing. I hate Dr. M-it's-just-a-tic. I hate that gnawing pit in my stomach. I hate that I already knew...and that because I already knew my tears are all dried up.
I hate that we could go 8 months SF...and it come to this.
15 comments:
I am so sorry!!! I am crying with you. We are praying! I wish I could give you a big hug. Trevor will beat this again...he will!! Lots of love and prayer from your blogger friends in Alabama.
Allison & Jeff
Any idea how you get your arms through this monitor to give hugs??? Cuz I'm sure you could really use one right now.
After Emma got her IS diagnosis, she was put on Topamax & Vigabatrin. We did the Vig for a couple of months. The combo did a really good job at keeping the seizures away. We weaned off the Vig and were left with just the Topamax. We've only had a couple of seizures since weaning off the Vig. And I believe those are from growth spurts.
Emma hasn't had any IS signs on her EEGs. She does have some activity, but it doesn't actually manifest physically. At the moment, our doctor isn't too worried about it.
Thinking of you guys. Good luck tomorrow.
Hugs & prayers!!!
I am so sorry. Stay positive. I am hoping and praying that they will stop as quickly as they did last time. Ugh...I hate the choosing of what AED to try next. My opinion...I would lean towards ACTH. But of course, the thought of a 2nd round of ACTH is gut-wrenching. I believe Dr. Chugani prefers Zonegran over Topamax. They are very similar drugs but I **think** Zonegran is less sedating that Topamax. UGH!!! I am so sorry you are having to deal with all of this.
It's a tough decision, but you will make the right one.
Everything is going to be fine. I just know it. Just know we love you and we'll be praying for you.
Hugs,
Shanna
I'm so very sorry. He's beaten the IS monster once so you know that he can beat it again! He's one tough little dude. All of our IS kids are. Please try to get some rest because I'm worried you are going to get sick...Trevy needs his Mommy. You know we are sending you huge, huge hugs.
I am sorry I missed your call last night. tired Mommy went to bed early. I tried calling this AM since I know you get up early, but I only let it ring a few times. I will call again this morning. Til then know I am thinking of you all.
hugs,
Jen
Sexy voice?? You're too funny, edven when all this is happening!
Danielle I am so sorry. My heart hurts so bad for you right now. Of course, I will be praying like crazy for you guys. I wish I had some words of wisdom for you, but I don't : ( This is what we are always afraid of, as IS moms. But I'm here to listen..anytime. I'm praying. I'm believing with you that Trevor CAN beat this again. The med choice is though. Maybe ACTH again since it worked before? Or Vigabatrin? I'm not sure about Topamax...I've heard it makes the kids tired, but KC takes Zonegran and I love it. It works well with no side effects (at least for him)
KC and I are sending big hugs to you and your family. We are loving you guys, thinking of you and praying for you. I just had KC say God please bless Trevor, in his mumbled, sweet sort of way. I'm sure God understood him ; )
Love,
Karen
don't ya wish there was some master handbook to tell u - when this happens, do this! ugh! i'm here for ya babe - hang in there!
xoxox,
sharon
Don't know what else to say other than I'm thinking of you all, especially little Trevor. I know you'll be strong and find the positives just wish you didn't have to. Big hugs and love from the UK. xxx
Thinking of you as always - we think Jude may have lapsed also but don't want to say it out loud just yet. Hope things work out your end...
Ian
I want to thank all from the IS group who have been an encouragement to my daughter. As the Grandma of Trevy, I have felt so helpless and a lot of times am at a loss for words. The only thing left often is to pray for my precious grandson, daughter and family. The Lord has been so faithful in using each of you to offer encouragement and hope. Thank you from the bottom of my heart. You have been a tremendous blessing to all of us.
Love from Trevy's "Grams"
I just came here from "Marissa's Bunny", and want to wish you and Trevor the best of luck. I hope whatever course of treatment comes next works.
My healing thoughts and prayers are added for your family, too. I had never heard of IS until Marissa was diagnosed. I hope this blog is giving you some emotional support from all of us who care
marissa's nana
Oh Danielle I am so sorry...that Trevy and you all have to go through this again! How maddening, heartwrenching and so totally wrong.
My heart goes out to you all. I'm praying Trevy beats the odds again & this time it sticks.
Take care of you.
Danielle,
So sorry sweetheart! We are praying really hard!
Love you!
Jenn
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