EEG's (Electroencephalography)

Getting ready to fall asleep for his second EEG

EEG's are a bit of a scary thing for your first time.  You are lead into a small white room with a bed, a computer, sometimes a camera on the ceiling, and a few chairs.  You are supposed to somehow get your child in a comfortable position so that the EEG tech can stick many wires (Leeds) onto their head and then wrap them up like a mummy.  Noah of course HATES this whole process.  He cry's each and every time to the point of exhaustion and then falls asleep as soon as they are done wrapping his head.  Maybe this is their evil plan or something to get my child to sleep.  Since he is a baby I can't actually sleep deprive him at this point.  With every wire they stick to his head they have to first take a swab of sticky goop and apply it onto his scalp with a very irritating rubbing motion that makes him go bonkers.  They do this about 20-40 times depending on how many wires they are using that day.  Then once the wire is stuck on to his head they put a piece of tape over each one that pulls at his hair and makes him scream worse.  Then to make matter worse they take a mile long piece of gauze and turn my son from an adorable baby into an adorable mummy.  Noah's eyes are usually as red as cherries at this point and my anxiety and worry is through the roof.  I try everything I can to keep him calm.  Pacifiers, bottles, his favorite blankets or toys.  Nothing works but he does end up falling asleep out of pure exhaustion.  

20-30 minutes later after I sit in a darkened room watching the patterns on the computer and trying to figure out what constitutes a bad read or not the EEG tech finally returns to tell us it is done. The last time I was googling what an EEG looks like for a child with Infantile Spasms (hypsarrythmia) and honestly I can't make it all out.  Probably why they make you go through years of schooling to read those things.  Every breathe he took or movement of his head something was happening on the EEG so I was clueless what it all meant.  

The EEG tech is not allowed to tell you what the outcome is and they are just there to kind of torture your sleeping baby even further by flashing bright lights in front of their eyelids to see if that might cause a seizure.  Then, if your sleeping baby isn't awakened from the flashes, he is awakened from the EEG tech unwrapping his head and quickly yanking all the Leeds, goop, and tape of his scalp and hair.  Another screamfest arises and the tech tries to do this as fast as possible.  We then wipe a wet cloth over his hair to get some of the stickiness out of it and then we are sent on our way to await a phone call from the neurologist.  

I pray that if and when we have to have another EEG that Noah might be older and might be able to better handle the whole process.  For now as a small baby it annoys and scares the crap out of him and I think might be why I have started to see tiny grey hairs coming out on my head. 

Infantile Spasms Gone!!!

I forgot to mention that when Infantile Spasms are diagnosed an EEG is performed.  When Noah had his EEG it showed something called Hypsorythmia, which is basically just really chaotic brain waves happening all over his tiny little brain.  Not all diagnosis of Infantile Spasms will have Hypsorythmia but most do.

After Noah was on his steroid for two weeks he was still showing signs of episodes but once again they were taking on a new form.  Now his eyes were rolling upward and locking in place and then his back would arch.  However, he could still take his bottle and cry and laugh and we could actually get his eyes to drop down with distraction. He was also no longer doing any of the mouth chewing or lip stretching motions. He could not do any of this stuff before with the other Infantile Spasms. 

I called his neurologist once again. Told her that he is still having the spasms and that "I think he needs to have a second EEG this week to see if the Hypsorythmia is gone."  She agreed and he was in for another EEG two days later.  (sometimes you have to be real specific with doctors and you will be surprised on how much they will do for you).  I also asked if she would be working the day of the EEG and if there was any way that she could be present for the EEG or afterwards. Our next actual scheduled appointment was two months out so I was just double checking to see if she would.  Surprise to us she came in early that day just to be there to look over his EEG and see us before her other patients arrived. She is wonderful.  I also got a chance to show her a new video we had taken of Noah's newer episodes. 

His EEG showed that as of right now his Infantile Spasms are gone.  G.O.N.E!!!  Yahoo!  No more hypsarythmia or brain damage to my Noah's Noggin :)  However, why then was he still having these strange episodes.  That is when I pulled out the video.....and that is when he got yet another diagnosis to his already long list of life altering diagnosis'......Sandifer's Syndrome.