Hello all, I am hoping you wonderful ladies can read my story and maybe give me some advice. I dont agree with the Neurologist on what type of seizures my 4 year old is having, does it even matter though? is it worth persuing and arguing with them?
I also dont agree with the DX, I think it is a scape goat kind of dx so that they dont have to look anymore.
I will give you a little bit of back story to start with, sorry if this get long.
My youngest son was born at 30 weeks via C-section due to transverse presentation and fetal distress. Apgars were 4 and 7. NICU stay was farly short, 7 weeks, slow feeder lots of set backs, and tons of apnea and bradacardia. that was the biggest hold up in comming home was the bradacardia issues. He went home on an apnea monitor and used that for almost 6 months, but could have stopped after about 2.
Over the next 2 year he was behind for almost every developmental milestone even given the corrected age. He was 3 before he would talk at all. He has always been very small also, he has just in the last few month even made in onto the growth chart. He is 4 now, 30 lbs.
On April 25 he had been sleeping for about 20 minutes and I walked through my room (he sleeps with me becasue he likes to get up first and get into things) and notices both of his arms were shaking. I got closer and pulled his blanket off and realized his legs were stiff. His eyelids were fluttering. His arm went from shaking while held close to his body and pulled in, to clenched in tight fist.
I had a brother with CP and he had seizures quite frequently, so I recognized it as a seizure immediatly.
After a few minutes without it stopping I decided we needed to go to the ER, convinced of coarse that he had suffered some severe head injury or menengitis or something of the like.
It last a little over 25 minutes stopping right as we pulled into the ER parking lot. As it came to an end he vomiited.
For about the next hour he had no use of his left arm, and his left leg was tight still so he couldnt stand. The left side of his face was drawn so he couldnt talk. I thought it was a stroke honestly, I was terrified.
The ER did blood work and a CAT scan. All was normal. HE was refered to a Ped Neurologist for a sleep deprived EEG.
Over the next few weeks I did tons of research on seizures. I discovered something called absence seizures that I had never heard of before, but was sure he had been having since he was about 6 month old. I remembered watching him stare wide eyed at the wall, no blinking no responding to his name. My little brother who was 10 at the time would see him doing it and joke that he wanted to have a staring contest, and would stand in front of him doing the same. It would usually last 20-30 seconds. I ask his Ped about it as I thought it was maybe a vision problem. They checked his eyes and said he was fine.
So finally the time came for his neuro visit and we made the 300 mile trip to the Neurologist.
His EEG was abnormal and the Dr agreed that the starting spells were most likely seizures. So he was put on Trileptal. The paperwork I got from the Dr called the seizure a complex partial seizure evolving into general seizure. I didnt really understand how she could know that since I didnt watch the seizure start, so how do we know it wasnt a general onset?
Yesterday afternoon I just got the results from the Neuro on an MRI, they say he had periventricular Luekomelatia. I got a copy of the report from the redialogist, it says multiple dilated pervascular spaces is the perventriclar white matter.
I ask what the dx was going to be, if they were going to call it epilepcy, and she said that the dx was inconclusive, and that I could call it epilepcy if I liked, but that it didnt really matter, that they dont dx like that.
Non of my reading suggest PLM having any correllation with VRS.
After I talked to the Neurologist yesterday I walked into the bedroom to find him having a seizure. It looked just like the last one, exept to begin with I thought he might still be contious because he was laying on his side, and looked like he was looking at me, he had what at the time looked like a scared expression on his face. It took me a few seconds to realize his eyes were just pointed that he wasnt actually looking, and the expression was just the muscules in his face.
I didnt see this one start either, his left hand was shaking when I found him, but the other was drawn in and fist clenched, legs stiff, so his whole body was involved not just left side.
My question I guess is what is making the Dr think it is Complex partial and not General, is that likely because the left side seems to be more involved? and Does it make a difference in the treatment to know how it starts?
His left side was limp again for a long time, he couldnt pick up his head and couldnt look to the right it seemed, like not only could he not turn his head, but his eyes wouldnt seem move either. His left leg was stiff again. He was vey upset that he couldnt make his arm move. He kept asking me to grab it and pick it up. After about 15 min he went to sleep. When he woke up 3 hours later he was fine.
Thanks for reading, sorry it was soo long. Any insight would be appreciated.