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