What sucks more than giving your daughter daily injections of ACTH? Having to still give her daily injections when it did NOT work. Ughhhhhhhhhhh!!!!!!!!!!!!!! Her seizures are slowly creeping back up in numbers. Ughhhhhhhhh!!!!!!!!!!!!! What's next? Who knows. After failing 12 treatments (8 different drugs with trying 2 twice, ketogenic diet, IVIG), it is hard to think up another option. When do you say enough is enough.
I talked with her neuro on the phone the other night. He said he doesn't think anything is going to stop her seizures. He said it is just trying to find a balance of keeping them somewhat under control while minimizing the effects to her development. When I asked if they could possibly morph into a different type of seizure that would be easier to control (I am trying to hold on to a little bit of hope here not really trying to have him predict the future but knowing the personality of my neuro I do not know why I ask him these types of questions)...he says...hopefully but they might not be able to be controlled either. Why...why do I ask him these things. I really need to find a new neuro. I need a neuro that says maybe we will find something...maybe she will outgrown them...just something to keep me hoping. But maybe I should let go of that hope. Just enjoy Sophie day to day. Stop thinking about her future. But what parent doesn't think of their child's future...special needs or typical developing. As a parent, that is hard to do. I never thought about her having uncontrollable grand mal seizures...until now. I should be happy that she is only having uncontrollable tonic seizures and infantile spasms. It could be worse. I should really stop posting so late at night. I am really depressing at this hour. Sorry. So much for my new philosophy of thinking positive. Tomorrow is a new day. I will try again tomorrow. Think positive. I will keep telling myself that.
I talked with her neuro on the phone the other night. He said he doesn't think anything is going to stop her seizures. He said it is just trying to find a balance of keeping them somewhat under control while minimizing the effects to her development. When I asked if they could possibly morph into a different type of seizure that would be easier to control (I am trying to hold on to a little bit of hope here not really trying to have him predict the future but knowing the personality of my neuro I do not know why I ask him these types of questions)...he says...hopefully but they might not be able to be controlled either. Why...why do I ask him these things. I really need to find a new neuro. I need a neuro that says maybe we will find something...maybe she will outgrown them...just something to keep me hoping. But maybe I should let go of that hope. Just enjoy Sophie day to day. Stop thinking about her future. But what parent doesn't think of their child's future...special needs or typical developing. As a parent, that is hard to do. I never thought about her having uncontrollable grand mal seizures...until now. I should be happy that she is only having uncontrollable tonic seizures and infantile spasms. It could be worse. I should really stop posting so late at night. I am really depressing at this hour. Sorry. So much for my new philosophy of thinking positive. Tomorrow is a new day. I will try again tomorrow. Think positive. I will keep telling myself that.
6 comments:
We are so sorry that once again a treatment was unsuccessful, but I think you're right when you say you can't dwell on the disappointments and fear of what might be. I know that sometimes you just can't help going down the "what if worse case scenario" road. What parent doesn't? Just don't dwell there too long.
Sophie has demonstrated to all of us what determination and hard work can result in. I'm sure your doc never gave you a lot of hope that she would crawl, much less walk and talk. I guess she showed him!!
I know every bad day, every damn seizure rips at your heart. I pray that every smile she gives when she's splashing in the pool or being twirled by her cousins on the swing or when she she looks at you and says "mama" or " more pe-bah" puts a little soothing balm on those rips.
All of us here in KC continue to celebrate her accomplishments and applaud the determination you and Brandon have to leave no stone unturned to try to find the best treatment options. I can't imagine where Sophie would be if you and Brad had been less aggressive.
Here's hoping today is one of the good ones.
Love to all of you,
Barb
I am so sorry to hear this. There are still so many drugs to try... check out this list
http://professionals.epilepsy.com/page/medications.html
Re: neuros. I am not sure where you lived, but have you consulted with Chugani by email?
Good luck!!
Hi,
My Name is Monica & my 2 year old son Connor was diagnosed the end of 2006 at 8 months old with IS. I found your site through Dear Trevor. I can so relate to this post. We have tried so many options with Connor also and nothing has managed to stop the spasms. We are actually restarting the keto diet. We had started the wean, but his spasms got progressively worse so we decided 10-30 a day was much better than 100 a day which is where were headed. I'm at the point too that it's like at what point do you say that we've tried everything. That we may never stop the spasms but we can atleast try to control enough to just have a few a day. I'm frustrated as far as neuros go too. I just don't feel like they really care. It's not their child you know. HAng in there. Your little Sophie is such a doll. I'll keep following her progress. Please feel free to check out our site! Big hugs from another IS mommy, Monica
Oh hon, I am right there with you. Our baby has IS and we had a failed ACTH experience in June. The daily shots during the wean were the absolute worst, each one was like a jab to my heart too since we had to cause her pain, and it wasn't helping her. We are still working our way through other drugs in hopes to stop her seizures. My heart goes out to you and I feel your frustration and fears for her future. You have a beautiful girl and what she had had to endure is not fair. I know that feeling in the pit of your stomach when you see the seizure start, that "oh no, not again" feeling and your heart just hurts.
Just know you are not alone in your difficult journey, there are others who share this pain and Sophie is in my "prayer list."
-Christina
Elaine,
I can only imagine what your going through having to continue give the injections. We've failed many treatments too. I'm always praying for Sophie and many of Ava's other IS friends.
I'm glad we all have eachother to lean on. It was only a month or two ago I was considering the VNS for Ava! I just didn't want to fail any more meds.
I know you guys have tried the Keto, but MassGeneral has a Low Glycemic diet that seems pretty easy to follow. We were going to switch to it if Ava kept rejecting. Did keto help Sophie at all?
Elaine- I hope you and Sophie are doing better and are almost done with the wean. I'm sending positive thoughts Sophie's way!
Lori and Nora
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