Suprizingly I did not.
But I certainly feel like I may at any moment.
I don't know what's going to happen the next few days...and I'm not sure I'll be emotionally able to even post. Right now my heart is running down my face. I feel so weak. so scared.
But I want those that follow & love Trevor to know. To pray. To think love. We desperately need it. Below is the email I recieved this morning from Dr. Chugani after he viewed the video clip. My mom is watching all three kids so I can shower...and stop crying. I've left three messages already for our neuro...plus emailed new clips from this morning to them. I uploaded on of the clips from this morning to YouTube as well...it may take a few minutes to be viewable.
They are remnants of infantile spasms. The fact that he consistently goesto the right side suggests that he has a focus on the left side. Since heresponded so nicely to ACTH, many docs would give another course of ACTH. Others may use vigabatrin. If he did not show too many side effects toACTH the first time, I personally would go with ACTH, but opinions willdiffer, HC
8 comments:
Danielle...my heart breaks for you and your family. I know the pain you feel. I know that nothing at the moment can take it away. I know at some point it will get better. Out of the 2+ years that Sophie has been having seizures...she had one period of 33 days where she was SF. I cannot explain the pain I felt the day they came back. The day that all my hopes were ripped from me yet again. Hopefully, whatever path of treatment you choose for Trevor, his seizures will be gone again before you know it. Between the results of the BEAM study and now this...my heart aches. I will say extra prayers for Trevor. Still hope...still believe...our kids will never cease to amaze me.
We're here for you. Thinking of you guys. And praying for Trevor.
It's strange on our end. I don't want Emma to have seizures. But it seems like after the last couple of ones that she's had, she gets "better". It's like it unlocks some part of her brain to learn and she takes steps forward in her development. I don't know if that's much help, but it's starting to be a comforting thought to me.
Danielle,
I am so sorry, I am praying for you, Trevor, and your family. I remember you saying how much trouble you were having obtaining ACTH through your insurance. I have 4 unopened vials in my refrigerator and will overnight them to you if need be. If your neuro recommends a second course-they are yours. Please, please keep us posted.
Take care sweetie,
Molli
We are here for you if you need. OMG. I can't believe this. Please call if you feel like talking. If you don't, I totally understand.
Have they confirmed the video evidence against the latest three day EEG? Our neuro had said it is difficult to diagnose just from video alone. He said if 10 neuros saw a child having seizures on a video, five would say they were seizures and the other five would say they were not. I watched the video three times, and it seems so slight, that I don't know how they can tell for sure from video alone.
It is so heart wrenching to hear that. Please, let me know if there is anything I can do. My thoughts and prayers are with you all.
my love, i'm here for u! i can't imagine what u're going thru, but i'm ALWAYS here to listen! my cell number is on my website if u ever need to call....u guys r in my prayers as u work thru this & figure out what's next....God has blessed u with such a beautiful family & i know he had big plans for u guys! keep on, keepin on sweets! and know that u have all of us to lean on it & when u need it!!!
I hope you have been able to get through to a neuro (any neuro) by now. I am thinking of you all.
hugs
I'm so sorry to hear this!! My heart breaks for you like it did the first time Connor had a seizure. I hope the EEG provides you with answers. Until then, hang in there. We are all here for you! I'm glad your Mom is with you. Thank God for Moms! Sending you and Trevy big comforting hugs!!!!
17 days, we went 17 days seizure free in the middle of ACTH. I'm so sorry to hear about this.
Let me know how it goes.
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