I suppose it is somewhat normal in everyone’s life to come to that… you know… that Breaking Point. That point where you feel completely broken and exposed before the world as the fragile human being you are. I have been at the Breaking Point many times. There are the big ones… Momma’s brutal murder, My little Brother Ian’s death by that hit and run driver, my perfect little Grand Baby Kaylynn’s death. There are the almost normal ones… Company you work for going bankrupt & Relocating, Lay Off & Relocating, Breast Cancer Scare, Breast Cancer scare while expecting your 6th child… you get the picture. I do not think there is anything though that quite prepares you for watching your child grow and regress at the same time. Nope, I was never quite ready to watch my little boy have a death look in his eyes, watch them roll back in his head and you realize he is not breathing… then wait for what seems like eternity for him to breath. 1 minute, 5 minutes, 12 minutes… no matter what the length is how many you happen to have seen that week… No nothing can quite prepare you and every time my heart feels like it will beat out of my chest and I fear… I fear that it will not stop, I fear that it will further damage his brain. Yes, I fear that I will loose my sweet little boy forever. As I sit watching him sleep with his stuffed animal, I can hardly believe that he will be 12 Thursday. My Brynnon, the sweet blue eyed dirty blond haired boy that can take apart anything.
I am anxious all night, waiting for the appointment to see the Neurologist. It’s a big day, because after that last 12 minute seizure his meds were increased and I want to hear that this 24 hour Video EEG looks better. I hope and I pray that we can just get a good report, at the very least a definite diagnosis and some answers for why this is happening to my Brynn. Can it be just a coincidence that he is the child that had a severe articulation disorder, he is the child with the cafe’ au leu spots, he is the child that has problems with self control, he is the child who is almost 12 with the cognitive function of a 6/7 year old… who happens to have Epilepsy. Over the course of 6 months he has declined intellectually and gained 18 pounds. Somebody has got to be able to explain this to me. So, I wait for his name to be called. I am so ready for this appointment! I have his Oxygen desaturation reports printed and ready all neatly in a folder in order. I have the video’s of Brett’s episodes he is having at night and I even have a list of questions. I am so ready for answers I cannot stand it. The appointment went so good the first half. “Yes, those do look like complex partial seizures Brett is having at night. Bring him to his pediatrician and he will order an EEG, then refer you to me if it is abnormal. If the EEG happens to be pretty normal, I would watch him closely as this can change at any time.” Okay, seems simple enough… We talked about the daytime events in Brynn. “Simple or Complex Partial definitely, but not petit mal. Would be extremely odd for him to have petit mal with his Rolandic Type.” This is where it gets complicated. Rolandic? Never seemed to fit in my mind for Brynn. I am after all one of those crazy people who just cannot let it go, I have to research until I am comfortable with the diagnosis and/or someone can explain it to me to get me to see their point of view and agree with them. Degree or not, I need evidence, especially when it comes to my children. A. He does not nor probably ever did have “Normal Intellectual Functioning” B. I have never seem Brynn drool or his face twitch unless he is having a Tonic or Tonic Clonic Seizure. C. Brynn does not Grunt, he moans while sleeping. So, my next question is obviously… Oh, so the 24 hour Video EEG shows Rolandic as well? *Record Scratch Sound* Uh, he just had one of those? “He did? When was that? I am sorry but I have not read it yet”
Next… So let’s move on, here is the Pulse Oximeter Desaturation Report from the 2 minute observed Tonic like Seizure that I observed and timed. I matched this up with the time, so that I could see if indeed he lost oxygen. All Highlighted and with my notes about what the seizure looked like. He then talks about Sleep Apnea and how Brynn has a short neck and he is a bit over weight, this is probably a sleep apnea. Makes sense to me… except i am showing a witnessed drop in Oxygen from normal level to 65% that lasted for 2 minutes. He questions the Pulse Oximeter, I explain I do tape it to his hand every night. He then says he will order a 24 hour sleep study and gives a grand example of how your body is able to adjust to lack of oxygen, used a diver as an example… My child is not a diver and hasn’t trained for this… So the day I have looked forward to… the one that I may finally get a few answers… at least find out what is going on to cause these increased seizures and what looked to me like a 12 minute Tonic… and two 2 minute Tonics… Of course when I tell him this he says that I am probably mistaken, because there was the slight twitching even if it was not the heavy jerking as his previous Tonic Clonic Seizures it still has the character of Clonic Activity. I said I think it looked more like a strange postictal phase with slight twitching, he says Clonic. Okay… time to move on… We are going to add Klonopin for him, this should help him sleep better too, especially if you are still seeing the kind of seizure activity your seeing. He is maxed out on the depokene for his weight, so we cannot increase it any more.
So we leave with fewer answers than we arrived with and more questions really because all of his answers were thus far based on a 45 minute Video EEG taken a year ago. Brett will see the Pediatrician, who will order an VEEG and the Neuro will read Brynn’s 24 Hour VEEG over lunch and let us know…
So we get home and get a call from the Nurse saying he has read the EEG and Brynnon’s awake portion was pretty normal with some right side activity. His sleep portion of the VEEG was very abnormal. I asked what percentage of it was abnormal and she repeated the question and said she will ask the Neuro, I then asked if she could ask him too if he still thinks it’s Rolandic. That was before 2 PM today… never did get a call back… I called the office to let them know that Brynnon still cannot swallow a tablet and needs a liquid, they were going to call it in, no problem… the pharmacy I gave them the address and phone number for never get the call for the Klonopin…. Pretty much a wasted day huh?
I have not really reached my Breaking Point… No, not yet but I am ever so slowly getting there. Brett with Epilepsy… on top of Brynnon’s problems… and then stack on everything else. I did not even home school today, and I am pretty sure I will wait till Monday to get it back together. Maybe, just maybe if you let things go, relax and breathe in deeply every once in a while life will settle down and you can get close but can delay the inevitable Breaking Point. Maybe, hope for the best but prepare for the worst right???
|Brynnon (12 Thursday)|