U of I Children's Hospital

I've been pretty bad about keeping this updated, but I've been told that a lot of people are asking about how he's been doing. A week before Christmas, he had a series of seizures that were pretty unusual for him. Instead of his typical complex partials, (stare off into space for 10-30 seconds then snaps right out of it like it never happened) he convulsed. The first one lasted several minutes and 911 was called, he was given oxygen, then transported to the U. They did some routine blood work and sent us home. He had 2 more convulsive seizures so I took him back up the next day. While back in the ER, he had another seizure in front of the doctor and they had to give him 3 doses of rescue meds to stop it. After we noticed he wasn't following anything with his eyes or using the right side of his body, which is apparently called Todd's paralysis in epilepsy...but it reminded me a lot of left side neglect that stroke patients can get. Liam's paralysis only lasted a few hours but it can last up to 36. Not even his eyes would move past mid-line, it was as if he just completely forgot that the right side of his body was there, nor did he cry when IVs were put in on the right side.

Next, he had a CT scan and they thought that he may have a lesion in his left parietal lobe. He was still pretty out of it from the seizures, which is not normal from him, which worked to our benefit because he didn't even try to wiggle out from the scanner and it only took about 30 seconds. Once we were admitted to the hospital, they put us into isolation as a precaution, so staff had to put on masks, gloves, and gowns anytime they came into the room. I had to do the same whenever I left the room. The child life specialists were great at bringing in toys, movies, and even snacks since he couldn't leave the room. After a spinal tap, more blood work, respiratory tests, observation, and 2 MRIs, we were able to eliminate a lot of things but weren't able to figure anything out. They determined from the MRIs that the images from the CT scan were put together in a way that only made it appear there was a lesion and there was no brain abnormalities aside from the delayed myelination in the frontal lobe that we were already aware of.

I am having the new MRIs sent to St. Louis for Dr. McGill to compare to the MRIs from June, but other than that we haven't figured much out. We now have a rescue med on hand that we have to give him if he has a seizure that lasts more than 5 minutes or if he has more than one in an hour. We are going to do a new EEG in February in St. Louis as well. I hope for his sake they get all the glue out of his hair this time! We have upped his trileptal and he hasn't had any seizures yet, but this EEG MAY tell us if we need to change or add to his meds. Apparently epilepsy drugs have a high abuse rate and can be hard to get so I hope not. We are only allowed to have one dose of the rescue drugs at  time due to federal regulations, which worries me since he had 2-3 doses in the ER.

So, we haven't learned much but he is doing well and has even started pulling himself up to stand and cruising along furniture. I'll just continue "going with it" for now until I learn I there's something I can actually do.