Elin had seizures everyday for nearly a week following her procedure. It was a rough few days for us that's for sure. She also would have nothing to do with the bandage on her head. She had removed it before even leaving the OR. The nurses tried to use a bandage and a neoprene headband; she wasn't a fan of that either. So last Thursday I enlisted Susie to come up and help me and we spent the entire day trying to keep her hands off her head and tried to distract her. She is no dummy; when her hands were restrained her would lay on her back and rub her head back and forth until she worked the headband off. By Thursday night we gave up and let her wound breathe and hoped she wouldn't scratch or touch it. Sure enough, Once the head wrap was off she left her head alone.
The doctor recommended a full week without wearing her CI so she couldn't hear and that was also a problem. The whole post surgery was pretty much a disaster but we made it through and now a week out we are trying to return to normalcy. She has been going to school this week and has remained seizure free there- so that's something!
Yesterday we started letting her wear her CI again. I wish I would have had my phone by me when I put it on her. She lit up- started giggling and babbling. It was obvious she was VERY excited to be able to hear again. Unfortunately her incision became swollen yesterday so she couldn't wear it all day.
We met with her epileptologist (neurologist) yesterday to go over the results of her MRI. It revealed that her brain has continued to grow and develop as any brain typically does but now that it is bigger we can see more of the structure. When she had her first MRI at 7 months they were able to identify her partial agenesis of her corpus callosum. Basically this means she is missing part of the brain matter that connects the two hemispheres of the brain. From her most recent MRI it appears in some cross sections that her corpus callosum connects (albeit thinly) in some spots. It is still much smaller then a typical corpus callosum but it has continued to develop and grow. She does however have a broader issue- it's call cortical malformation- meaning parts of her brain were not formed correctly in inutero and no amount of maturation will fix that. So her left and right temporal regions are not normal. We know from her EEG's that the seizures tend to come from the left temporal region and the MRI supports that the tissue in this region has not formed correctly.
So what's next- well that's the tricky part. Perhaps more EEG's, sleep studies and even another MRI to measure how her brain functions under certain tasks. This news did not make Myles or I happy. We thought this MRI was the only one she would need and we are not planning to put her under the knife again to remove the magnet so they can do this all over again- no thanks!
So we are moving in another direction called the ketogenic diet. It is a special diet that can sometimes help kids with all different kinds of intractable epilepsy. Its is 90% fat- basically no carbs, minimal fruit and veggies. All oils, butter, creams, high fat meats etc. I will write a separate post about this because it is intense and kind of confusing but very promising.
In summation- no real definitive answers to our most pressing questions. Can she under go epilepsy surgery? Not without many more tests. Does the MRI explain why she has these seizures? No, but it can tell us the area where the seizures are coming from is abnormal. Can we control her seizures better? With the new diet- perhaps.
