The following email dialogue I'm about to share is intensely personal. For me. Tears streamed while I composed. Because my heart is deeply deeply involved.
I'm not sure that my heart is even completely comfortable with being so open.
And yet every time I've swallowed the knot and been gut-wrenchingly honest. It seems I'll find an email from someone who was moved. Usually that's someone who also loves a child with IS.
The passion that stirs my soul crazy for rescuing Trevor. Also burns in my heart for other families living the crazy IS life. It's all a giant learning curve you know. I never expected to sit here. Debating with doctors. Insurance companies. Making impossible treatment choices. Fighting for my son.
And it sucks sometimes. Many times.
And it takes tremendous courage. I used to down-play it. Like somehow it wasn't unusual. Important. Brave.
But it is.
And it's so incredibly hard. On the heart. Mind. Emotions.
But it's also incredibly important. For my soul. My sanity. My family. My son!
**************
Dr. Neuro...
How do you feel if we remove the Vigabtrin...and introduce Topomax???
Honestly...Trev's seizures really haven't changed. We're currently at 100 mgs am & pm I don't think the Vig is benefiting. And I'm ready to move forward with Top.
His teachers at Groden yesterday mentioned that he was quite floppy. Sooooo...I'm going to wait the full 7 days before increasing again.
Also...I've been doing a lot of research regarding generic vs. brand. I know we tried generic Zonegran...but I always wondered if we'd gone with the brand if it would have made a difference. Can you do a pre-auth for brand Topomax?
...danielle
***************
Hi Danielle,
I feel topamax will be a better option. I will try to get authorisation for the brand topamax. It is still very early for final word on rufinamide . I am working on the referal to another Dr. Boston. I looked at the PET images. i am not very impressed at the asymmetry, but I will send it to Dr. Chugani.Let us see how things evolve.
Dr. Neuro
*****************
I totally agree with adding the Topomax to the Banzel. I figured let's cocktail those two rather than the Vigabatrin. Although it's hard to not lose hope in Banzel when we haven't seen any reduction yet. We'll give it two months...
Regarding the Topomax. I know that Neighborhood has taken the generic only stance. However, even the Epilepsy Foundation has issued a statement regarding the use of generics for treating seizures. In the event that Neighborhood refuses to authorize the brand...there are two possible compromises.
1) We do bi-weekly blood draws to check his levels
2) Depending on how expensive the cost...Jonathan & I may be able to pay for the brand script out of pocket. We're working through SSI approval...which will give us extra money in hand to help with costs associated with Trevy's care.
Lastly...I trust that you'll appreciate our thoughts. Jonathan & I both feel strongly that we have to follow the surgery path completely before we can let go of that as a possible option for Trevor. Even if that means having Chugani see Trevor. At this point...it's hard to believe that we'll find a med that will allow Trevor to reach his full potential. Which is why we would even consider something as radical as surgical intervention. When Trevor's IS first presented...you & Dr. M both effectively convinced us that we needed to move aggressively to save him! Choosing ACTH that first time was SO terrifying. But we'll never regret using it despite all the fears we faced with side effects. And even though the second round was ineffective...we don't regret trying. It's the same reason why we were willing to trial Vigabatrin despite the possible visual field loss. Because at the end of the day...we are desperate to rescue Trevor.
When I look in his eyes...I see SO much potential. SO much life. And courage. But over the past few months it feels like we're losing some of that light that used to be there. We don't want to lose him because we're afraid.
Which is why we're at the point that we're ready to really aggressively pursue surgery. I know we can't make decisions on our emotions all the time. But deep down I have always had this feeling that we'd be here. That's why I could never relax...even during Trevor's seizure free time. I just had this sense that it wasn't over for us. My gut was right. And as each month has passed...this feeling in my stomach is so strong that I can't give up. I can't. Not until we've turned over every rock.
I love Trevor too much...
...danielle
********************
I am not so naive. I know that Trevor's miracle may not be during this life. It may be waiting with Jesus.
I know that there may come a time to wave a white flag. To let go. To stop fighting. And start surrendering. Specifically regarding surgery. But until we've gone down every feasible path...
I'm just not there. And the flag'll stay tucked away.
I'm not sure that my heart is even completely comfortable with being so open.
And yet every time I've swallowed the knot and been gut-wrenchingly honest. It seems I'll find an email from someone who was moved. Usually that's someone who also loves a child with IS.
The passion that stirs my soul crazy for rescuing Trevor. Also burns in my heart for other families living the crazy IS life. It's all a giant learning curve you know. I never expected to sit here. Debating with doctors. Insurance companies. Making impossible treatment choices. Fighting for my son.
And it sucks sometimes. Many times.
And it takes tremendous courage. I used to down-play it. Like somehow it wasn't unusual. Important. Brave.
But it is.
And it's so incredibly hard. On the heart. Mind. Emotions.
But it's also incredibly important. For my soul. My sanity. My family. My son!
**************
Dr. Neuro...
How do you feel if we remove the Vigabtrin...and introduce Topomax???
Honestly...Trev's seizures really haven't changed. We're currently at 100 mgs am & pm I don't think the Vig is benefiting. And I'm ready to move forward with Top.
His teachers at Groden yesterday mentioned that he was quite floppy. Sooooo...I'm going to wait the full 7 days before increasing again.
Also...I've been doing a lot of research regarding generic vs. brand. I know we tried generic Zonegran...but I always wondered if we'd gone with the brand if it would have made a difference. Can you do a pre-auth for brand Topomax?
...danielle
***************
Hi Danielle,
I feel topamax will be a better option. I will try to get authorisation for the brand topamax. It is still very early for final word on rufinamide . I am working on the referal to another Dr. Boston. I looked at the PET images. i am not very impressed at the asymmetry, but I will send it to Dr. Chugani.Let us see how things evolve.
Dr. Neuro
*****************
I totally agree with adding the Topomax to the Banzel. I figured let's cocktail those two rather than the Vigabatrin. Although it's hard to not lose hope in Banzel when we haven't seen any reduction yet. We'll give it two months...
Regarding the Topomax. I know that Neighborhood has taken the generic only stance. However, even the Epilepsy Foundation has issued a statement regarding the use of generics for treating seizures. In the event that Neighborhood refuses to authorize the brand...there are two possible compromises.
1) We do bi-weekly blood draws to check his levels
2) Depending on how expensive the cost...Jonathan & I may be able to pay for the brand script out of pocket. We're working through SSI approval...which will give us extra money in hand to help with costs associated with Trevy's care.
Lastly...I trust that you'll appreciate our thoughts. Jonathan & I both feel strongly that we have to follow the surgery path completely before we can let go of that as a possible option for Trevor. Even if that means having Chugani see Trevor. At this point...it's hard to believe that we'll find a med that will allow Trevor to reach his full potential. Which is why we would even consider something as radical as surgical intervention. When Trevor's IS first presented...you & Dr. M both effectively convinced us that we needed to move aggressively to save him! Choosing ACTH that first time was SO terrifying. But we'll never regret using it despite all the fears we faced with side effects. And even though the second round was ineffective...we don't regret trying. It's the same reason why we were willing to trial Vigabatrin despite the possible visual field loss. Because at the end of the day...we are desperate to rescue Trevor.
When I look in his eyes...I see SO much potential. SO much life. And courage. But over the past few months it feels like we're losing some of that light that used to be there. We don't want to lose him because we're afraid.
Which is why we're at the point that we're ready to really aggressively pursue surgery. I know we can't make decisions on our emotions all the time. But deep down I have always had this feeling that we'd be here. That's why I could never relax...even during Trevor's seizure free time. I just had this sense that it wasn't over for us. My gut was right. And as each month has passed...this feeling in my stomach is so strong that I can't give up. I can't. Not until we've turned over every rock.
I love Trevor too much...
...danielle
********************
I am not so naive. I know that Trevor's miracle may not be during this life. It may be waiting with Jesus.
I know that there may come a time to wave a white flag. To let go. To stop fighting. And start surrendering. Specifically regarding surgery. But until we've gone down every feasible path...
I'm just not there. And the flag'll stay tucked away.