I am heartbroken.
My 4 year old had a resection of his left parietal lobe the Thursday before Thanksgiving. His neurologist and neurosurgeon both commented about the dramatic difference in the subdural grid EEG from before the resection versus after.
The pathology of the resected tissue showed a lesion, which everyone seemed pleased about, since it hadn’t showed on the MRI.
Everyone seemed confident they got it all.
But, the seizures haven’t stopped.
Actually, now they are more often than they were before. Today was the 3rd in 3 days. Before, it was always 5-10 days apart. His right arm seems noticeably weak afterwards, which I never noticed before.
So, after putting my little guy through all of that… After putting our whole family through that, it’s just heartbreaking that it’s not better. Possibly worse?
So, we’re starting back on the M.A.D. (modified Atkins diet, a less restrictive for of the Keto medical diet) and may be upping the dose on one of the 3 AEDs (anti-epileptic drugs) he is still on.
It makes me angry. My little guy doesn’t deserve any of this. 😢. I just don’t understand. We did all of this to help him. How can it possibly be getting worse?