St Louis Children's EEG/Neurology

Today Pacen had his EEG & neuro appt with his new provider at St Louis Children's. It took several months for us to get in with the provider we wanted, and today was the day YEY!

I honestly went into this appointment thinking about how great Pacen has progressed, that he hasn't had any seizures from what we've notice in about 6 months, and things were heading in the right direction. I was hoping we would have been going down a path of decreasing medications,  get a happy face sticker and be on our way.

We arrived at the hospital around 830 to check in for our 9am EEG. We were taken right back and Pacen was such a champ sitting so nicely to get all of the electrodes glued on, and wrapped up so they won't fall off. He followed directions perfectly for the EEG tech, and went right to sleep within 10 minutes of laying down without any fussing. It couldn't have gone any smoother. He didn't any any visual seizures during the EEG, and the EEG didn't pick up any seizure activity. What it did pick up was a mess of abnormal beta waves. (I am still not 100% sure on how the beta waves should be vs how they presented on the EEG, but I will find that out on Monday or Tuesday when I get the report.)

Next, we moved onto the clinic visit with Dr. Ryther. She took her time to gather a detailed history from all of Pacen's records and we talked about his previous MRI that was done in El Paso & EEG that was done in New Mexico. We also talked about his previous seizures. She asked me what we were told about the MRI & EEG. We were told that both were normal. She immediately said that she had information for me that would seem somewhat shocking or new, but she wanted to do his physical exam before she told me. So here I am thinking, holy cow, what could it be?! She tested all of his reflexes, range of motion, joints, had him run down the hallway and play with a little squishy ball. After that is when I got some interesting news. Dr Ryther informed me that she studied Pacen's MRI and found that the occipital lobe (lobe in the back) of his brain is damaged, it is not symmetrical, and her clinical exam correlated with her findings from his previous EEG & MRI, and the EEG that he had today.  That his seizures and abnormal beta waves are coming from that lobe of his brain, and his birth was likely the culprit of this brain damage resulting in a mild Cerebral Palsy. She said on a scale of 100% being the worst and 0% being the best, his brain damage is right around a 10-20%. She said that we should have never been told that his MRI was normal, or led to believe that any of his seizures were not related to his traumatic birth.

Traumatic birth: very low oxygen for 14 minutes before a c-section was done. His APGAR scores were 2 & 4. 

I am sure that my jaw hit the floor. Just 7 months ago, we were told by the ECEP team in NM that his seizures, GI issues, development & high muscle tone was NOT caused by his traumatic birth.

Another MRI, an overnight EEG & a sleep study have been ordered to further add weight onto his diagnosis and pinpoint exactly what his diagnosis will be since cerebral palsy is kind of an umbrella term.

For right now, in the neurology aspect of things, his only diagnosis is epilepsy & developmental delay. In all reality, he is so very little delayed, that he doesn't qualify for therapy. That is a GOOD thing!

This is all of the info that I have right now. I will update again after we get the EEG report back next week because there will be changes.