Monday night's supper was a milestone: last keto meal, forever, we hope. Tuesday morning's breakfast was also significant: first non-keto meal in almost a year. We made pancakes for breakfast today (Tuesday), with peanut butter and fruit, since Micah is still supposed to avoid sugar for a few weeks. A fork wasn't fast enough for him to shovel it in, so he used both hands. Peanut-buttery hands and utensils and cup--delightful! There will certainly be adjustments, and it may not all be a smooth path to eating normally, but regular food, here we come!
We head to Children's Memorial in Chicago on Thursday for an overnight EEG (2pm Thurs to 7am Fri) and then an appointment with Micah's doctor on Friday morning. These EEGs are always exhausting for us all, so we'll be glad when it is over. At our doctor appointment, we hope to learn more about the schedule for testing and possible surgery. But we still won't know for a while whether or not surgery will be a good option.
Micah is loving life right now. His favorite things to do these days are sing and dance, play with playdough, read books, play with mama and daddy or friends, go to preschool, and now, EAT. We have enjoyed the few snowfalls we have had, but I'm tired of this rainy, foggy weather! It's nice to be able to go outside even in the winter, so I am hoping for more clear weather soon. And for no snow on Thursday and Friday when we are traveling to and from Chicago.
Tuesday, January 17, 2012
Tuesday, January 3, 2012
I guess I'll just say it...
Micah had a second MRI on December 12, 2011, and the results showed a small abnormality called a cortical malformation dysplasia in his left fronto-temporal lobe. Our doctor described it as a group of neurons all tangled together and in the wrong place. This has been there since he was born. It is not an injury or tumor or aneurysm. Our doctor believes this is the origin of Micah's seizures. She believes that the second type he had (generalized drop seizures from all over his brain) resulted from irritation caused by the first type of seizures he had (partial or focal seizures). It was these secondary seizures that the ACTH steroid was effective on. He continues to have subclinical (undetectable) focal seizures even now.
He did have an MRI last summer before he was two years old, on which they didn't see this. This is not surprising, since his brain was less mature at that point, which would have made it harder to see. And in fact, the first read of this MRI indicated no problem. Our doctor made the radiologists look again at the particular place where his seizures originate, and then they found this slight abnormality.
What does this mean? Once Micah has finished on the ketogenic diet, we will begin the process of a pre-surgical work-up. He will have more extensive testing to "prove" that this malformation is what has caused the seizures (PET scan, MEG, and other tests). If it turns out to be unrelated or he's not a candidate, we'll try something else. If it is "proven", and our epileptologist and her team (other epileptologists, neurologists and neurosurgeons at Children's Memorial and the Feinberg School of Medicine at Northwestern) recommend it, we plan to go ahead with neurosurgery to remove this small, malformed part of Micah's brain. There, I've said it (well, written it at least). Micah might have brain surgery. Soon. Gah!!!
We really don't know much yet, other than that more testing needs to be done beforehand. They do very careful screening of surgical candidates, and so we don't know for sure that Micah will qualify. The malformation has to be large enough to be seen in surgery, as well as in a place where operating will not cause damage to healthy brain tissue. This is not a life-or-death malformation so if he's not a good candidate, we obviously won't do it. Still, the drop seizures could come back at any time, so we want to do something if we can. When this surgery is performed, though, success rates are high. It can cure epilepsy. I have been reading some about it, and have seen so much positive feedback. Adults who finally have this kind of surgery wonder why they put it off for so long (fear) since it has made their lives so much better now that they are seizure-free. Micah is at a good age for this. He is a strong, healthy boy, not a fragile infant. Being as young as he is is an advantage for healing and brain adaptation after surgery.
I can talk about this clinically all day long. But to think of actually sending my baby into a surgery where they cut his head open and remove part of his brain? Terrifying! We have had to make a lot of decisions on this road, but this will be the hardest by far. Statistically, this surgery isn't really any more risky than the ACTH injections, but it feels very different because they would cut open his head!
I continue to try and process what this means. None of us is perfect, even if we are created in the image of God. Yet this particular imperfection in Micah has caused so much grief for him and for us. These questions will continue to rattle around in my head and will probably come out in future blog posts.
So, what's next? More testing, more waiting, more decisions. We pray for peace of mind and patience in this process. We don't know a timeline for testing or possible surgery. It will likely be a few months.
He did have an MRI last summer before he was two years old, on which they didn't see this. This is not surprising, since his brain was less mature at that point, which would have made it harder to see. And in fact, the first read of this MRI indicated no problem. Our doctor made the radiologists look again at the particular place where his seizures originate, and then they found this slight abnormality.
What does this mean? Once Micah has finished on the ketogenic diet, we will begin the process of a pre-surgical work-up. He will have more extensive testing to "prove" that this malformation is what has caused the seizures (PET scan, MEG, and other tests). If it turns out to be unrelated or he's not a candidate, we'll try something else. If it is "proven", and our epileptologist and her team (other epileptologists, neurologists and neurosurgeons at Children's Memorial and the Feinberg School of Medicine at Northwestern) recommend it, we plan to go ahead with neurosurgery to remove this small, malformed part of Micah's brain. There, I've said it (well, written it at least). Micah might have brain surgery. Soon. Gah!!!
We really don't know much yet, other than that more testing needs to be done beforehand. They do very careful screening of surgical candidates, and so we don't know for sure that Micah will qualify. The malformation has to be large enough to be seen in surgery, as well as in a place where operating will not cause damage to healthy brain tissue. This is not a life-or-death malformation so if he's not a good candidate, we obviously won't do it. Still, the drop seizures could come back at any time, so we want to do something if we can. When this surgery is performed, though, success rates are high. It can cure epilepsy. I have been reading some about it, and have seen so much positive feedback. Adults who finally have this kind of surgery wonder why they put it off for so long (fear) since it has made their lives so much better now that they are seizure-free. Micah is at a good age for this. He is a strong, healthy boy, not a fragile infant. Being as young as he is is an advantage for healing and brain adaptation after surgery.
I can talk about this clinically all day long. But to think of actually sending my baby into a surgery where they cut his head open and remove part of his brain? Terrifying! We have had to make a lot of decisions on this road, but this will be the hardest by far. Statistically, this surgery isn't really any more risky than the ACTH injections, but it feels very different because they would cut open his head!
I continue to try and process what this means. None of us is perfect, even if we are created in the image of God. Yet this particular imperfection in Micah has caused so much grief for him and for us. These questions will continue to rattle around in my head and will probably come out in future blog posts.
So, what's next? More testing, more waiting, more decisions. We pray for peace of mind and patience in this process. We don't know a timeline for testing or possible surgery. It will likely be a few months.
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