Lately I have just been too busy living my life to post. I think that is a good thing, as it means I have not been spending as much time on the Internet as a diversion. Life is moving along I guess.
Maddie is still having lots of seizures, though they are greatly decreased from 45 days ago. Right now she has around 100 seizures per day, which includes typical infantile spasms in clusters, single spasms and head drops which cluster as well. I did not actually count the head drops in clusters before because there were so many and I had tons of “bigger” seizures to count. But if I had been keeping track of them, I would say that 2 months ago she was having 500-1000 spasms of some type daily. That is just absolutely outrageous. Luckily, we have gotten some level of control now, but it has not come without a price. For Maddie, the side effects of Zonegran that are not fading much yet are loss of appetite and cognitive issues. She has trouble recalling and pronouncing words. She walks with much less balance. That is improving, but we are getting her a helmet because walking is truly dangerous for her right now between the seizures and her lack of balance.
In an attempt to try to reduce some of these side effects, while maintaining some level of seizure control, we decided to reduce her dose of Keppra, an anti-epileptic she has been on for 6+ months that frankly we did not think was doing much of anything. 5 days after the dose change when the number of spasms (in clusters) per day had quadrupled, we decided Keppra might actually be doing something after all. So we went back up to her old dose. And things have gotten almost back to where they were.
Going forward from here, the plan is still to do the Ketogenic Diet starting Oct 26 in Charlotte. By then, we have to have her meds at a stable level, so we really can’t change much between now and then if we want to give her the best shot at the diet working. If the diet works for her, down the road, we would consider weaning both the Keppra and the Zonegran. But for now, it seems they are both helping and we don’t want to lose the only seizure control we’ve ever had except from dangerously high doses of steroids.
The tricky part is that for the diet to work, Maddie will have to eat every single bite and drop of the foods we make her. And her appetite is tiny right now. And because of the loss of appetite, I haven’t weaned her from breastmilk yet. Because that has been the only way I can ensure she takes in enough fluids most days. But it has to be done, as much as I don’t want to do it.
Sometimes I think I’m insane that I am nursing my almost three year old. But she loves it, and honestly I do too, and there really isn’t anything that makes her happier in the world. It totally bums me out to have to take it away from her. But the diet will not work unless I do. And if it works, it will be worth it.
I truly feel the ketogenic diet offers the highest chance of seizure freedom for her now. Though the meds she is on now are helping, going much higher would leave her so out of it, I am not sure it
would allow her to make any developmental progress even if she were to get seizure free.
So in the next two weeks we may make one more med increase just to see if we see any great improvement and I have to wean her from nursing. We also have lots of therapy, and we are trying to get Maddie a bed that is safe for her through insurance. I have heard this can be quite a fight. So things are busy here.
And we also have to say goodbye to Brandon. I will write more about this later, but right now we are just enjoying our time together as much as possible.
Last month was Childhood Cancer Awareness month and I am ashamed that I let it go by without even mentioning it. Those of you that have followed our story for awhile know that this time last year we were gearing up for the MileStones walk for CureSearch. Hands down, I still feel it is the most important charity to support, but this year, I gave myself a pass. We just have too much going on right now for me to organize a team for an event we probably can’t attend. But I am optimistic that next year things will have settled down for us a bit and I’ll be asking for your money again for this fabulous cause. Honestly, if there were better treatments for children’s cancers, Maddie would likely not be suffering from hundreds of seizures a day. But that chemo hopefully saved her life, so I am still grateful.
On that note, October is a tough month for us because it was the month of Maddie’s diagnosis. But that means we are actually approaching the two year anniversary of her leukemia diagnosis. I’m not ready to celebrate yet, but every month she is still in remission is a step in the right direction.
And I hate to just throw this in at the end of our update, but I want to mention it now so that if you can pray for him, you would do so now. A mom of another child with IS, Danielle, has been one of my strongest supports in this battle with seizures. Her beautiful son Trevor is having grids placed on his brain today to monitor his seizure activity. This is like an internal EEG, which is much more accurate. He will be monitored this way until Friday, when he will have a subtotal hemispherectomy. Dr. Chugani’s team in Detroit is doing the surgery, so he is in great hands. Please pray for a successful surgery with no complications, but most importantly that this rids him of seizures forever.
I don’t think I can properly express how much I hate seizures and all that they take from our children.
Love to everyone,
Liz, Brandon, and Maddie