Back to reality

So we are back home (in Charlotte). And happy to be here, even though Maddie is not a candidate for surgery. I guess I am a little disappointed, though not nearly as much so as I expected.

I know if she HAD been found to be a candidate for surgery, I would have probably been rejoicing it right now. But I have to admit I am a bit relieved. I was scared of the idea of surgery, and even more scared of having to make that choice.

What it means for her right now is that we are no closer to finding a solution for her seizures. But we did really like the doctor there and he did give us some ideas as to what we should try next. He also seemed to put a positive spin on it all, and he seemed to think that Maddie’s spasms would change into another seizure type (this option ranges from okay to very bad depending on what type she ends up with) or that they may just go away altogether. This is not news to me, but for some reason, he just seemed so sure of it, it made me feel better today.

I am just mentally (and physically) exhausted right now. But for some reason, I feel a sense of relief. Partially because he spent so much time talking about how he liked our local Neuro and that he agreed with all the steps we’ve taken thus far. And partially because now I know I’ve done all I could do, that I’ve exhausted the options available to me.

So our next step is to try Zonegran which we never gave a fair trial. If that doesn’t get her seizure free, we will try the Ketogenic diet. We have been interested in the diet for awhile, but our hold-up has been that she is still breastfeeding. We will have to stop that, which is certainly okay at her age, but I have held onto it because of the fear of her cancer relapsing. Nursing has provided her (and me) so much comfort during all of this, and the idea of facing a bone marrow transplant without being able to nurse her makes me sad. But the ketogenic diet shows alot of promise for lots of kids with epilepsy. So if it comes to it, I will wean my little girl.

And for those who care about the details: the FDG PET showed diffuse hypometabolism of glucose throughout the entire cerebral cortex, so there was no sign of a focal point where the seizures originate. The FMZ did suggest a focus in the left hippocampus and temporal lobe. However, because the EEG showed some spasms originating from the left but others originating from the right, they did not feel there was enough evidence to provide any certainty that the left hippocampus was truly the source. But again, down the road, as the seizures change, it is possible a focus will emerge.

So we are back to our reality of trying meds and hoping and praying they help. But I am committed to finding something, and at least I know we tried.

And one more very important thing: Our IS buddy Bennett had a temporal lobectomy today. He is resting in the PICU now and it sounds like things went well. They removed his cortical dysplasia and a brain tumor which they believe to have caused his Infantile Spasms. Please pray for a smooth and speedy recovery for him and for his parents’ strength and patience during this tough time. We hope this will give Bennett a chance at a seizure free life.

Love to everyone,
Liz, Brandon, and Maddie

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13 thoughts on “Back to reality

  1. Liz, I pray for all of you everyday. Hang tough. You are one strong lady. I look forward to the day when Maddie is old enough to know how lucky she is to have you for a mom. We Love Tom & Susan

  2. Praying for you in Alabama.
    God bless you and give you peace and strength.
    May He lay a healing, comforting and peace giving hand on your baby.

  3. Liz,
    My heart sank when I read your comment on Ken’s blog. I remember all too well our trip home from Detroit and the disappointment of Austin not being a candidate. But, it wasn’t the end of the world for me either like I had expected it to be. Dr. C gave us great advice and lots of hope for the future.

    We also had confusion on the tests..EEG was useless, FDG showed right sided abnormalities, but the FMZ showed a possibility of both. I left scratching my head. Not because he did not explain it to me, but because I thought Detroit held ALL the answers and we still had some he could not answer. He did tell us that even though we should not pursue any further at that moment, we could still follow up and re-test later on. The seizures can laterlize over time. So, don’t give up completely. I’m not and probably never will. Yes, I’ll keep up with the med trials, maybe try the keto, but I’ll always keep that possibility in the back of my mind. The door closed right now, but not locked.

    The most important thing is that you’ve looked in every corner for your sweet girl. And I know you will continue to do so.

    I hope you can all get some rest now that you’re at home. I know you’ve had an exhausting week.

    (((hugs)))

  4. Liz,
    Thank you so much for the kind words you left on my blog. I have been reading through yours as well. When I read about your Maddie or Blogzilly’s Bennett, i know pretty much what you are feeling as I’ve been down that same road.

    I would love to say that all of this gets easier, but it never really does. You just learn how to better deal with it all and as you are your child’s strongest advocate, you just keep doing everything in your power to give them a happy and healthy life.

    Unfortunately, nothing has worked to stop my Taylor’s seizures…but I’m lucky in that Taylor is a very loving child and I never have to wonder how I’m going to explain what she has to go through to her. I actually find that as a consolation. If she had to have these horrible seizures then there is a part of me that is glad that she is still mentally a toddler. I hope that makes sense to you and you don’t think me bad for that.

    If there is anything you ever want to know about my journey with Taylor and her seizures…please feel free to email me. I would like to think that 20 years of seizures gives me a little insight.

    By the way, Maddie is just adorable. I love the picture you have of her at the top of your blog. It makes me smile everytime I see it.

    Dawn

  5. I can imagine that you must have such mixed emotions right now. I’m sorry that you didn’t have the outcome you were hoping for, but I’m glad you can take comfort in the fact that you certainly have exhausted all options. And it’s great to hear that Dr. C has such faith in your local neuro!

    Blessings to you as you try yet another “next step.”

    Ella (from Arkansas)’s mom

    p.s. You are such a good writer!

  6. We don’t know each other, but i receive updates through a mutual friend, the Singletons, in Columbia, SC
    Remembering you before our Lord and asking not only for healing but strength and peace.

  7. Liz…I feel so guilty that I’m just now catching up. I’ve been in such a funk. Maybe it’s just PMS? Gosh I hope…

    Anyway!

    It sounds like even though surgery isn’t an option right now…that you had a really positive optimistic visit. I SO wanted you to have a good…hope filled visit no matter what.

    …danielle

  8. Liz,

    I feel like my thoughts are repeating those before mine, but I too am sorry that Detroit was not what you were hoping it would be..what we were all hoping and praying it would be for Maddie. From your post, you seem very comforted with what Dr. C told you, and have a renowned sense of hope. I think of you guys often and pray that Maddie’s seizures will be gone.

    Praying for you all,
    Jody

  9. Hi Liz,

    I just found your site. I weaned my daughter Jade a couple of months after she turned two, and a few months after that she started having seizures. I, too, missed the easy comfort of breastfeeding, especially after the terrible “drop” seizures that caused her so many injuries. So I can certainly see why you don’t want to lose that bond just yet!

    My daughter is now on the ketogenic diet and it has been a miracle for her. It’s still a challenge and there are constant adjustments since she insists on growing (grins) but since all her medications made her seizures far worse, it has been so worthwhile.

    I love the pictures of Maddie in your banner; she is adorable! I wish you all the very best.

  10. Liz,

    Hoping that you have success with the Zonegran…praying for your Maddie. We are just now on Zonegran and not having much success just yet–but trying to give it time. Sometimes, you feel like you just don’t have the time though. We’ve been on so many drugs now….we’re seeing another neuro here in a few weeks to see if our Kate is a surgical candidate and I don’t know how I feel about it either…happy to have found your blog through Ken’s.

    Kandra

  11. I’m so sorry she isn’t a candidate, but I can completely understand your relief at the same time. SOunds like you had an awesome visit atleast with Dr. C. I’m praying we get to see him before it is all said and done. Connor has an MRI tomorrow so I’m waiting to see what is found with that & then i’m e-mailing Dr. C to see if he has any advice or willing to see Connor. We’ve finally met our out of pocket for insurance so NOW is the time. We’ve done the keto too (heck…what haven’t we tried???) so if you have any questions feel free to ask. We did it out of Charlotte (not sure I would recommend them though…several problems). Hang in there, trust me I know how frustrating this all can be. Maddie is a fighter and something is bound to work out eventually! {{{hugs}}} monica

  12. I got your message…if you will send me your e-mail add. then I will pass that info. on to you. You never know who is reading the internet so I rather not make this info public, goodness knows i don’t need to get sued…ha ha ha!

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