I haven’t posted much in the past two months. I’ve had a baby so there’s that and my 6 year son developed seizures, on average about 8 or 9 in a 24 hour period, 2 to 3 at night (while sleeping) and 5 or 6 in the day.
The weirdness around it is such that despite that when i get to the most recent part of it i’m going to look like a complete nut, i’m going to go ahead and place this chronicle on the internet in case anyone else finds themselves in this position, either themselves or with their children.
About 2 months ago, my 6 year old son Adam started doing this weird little tick. He would grimace, one side of his mouth would grimace he’d go “huh huh huh huh huh” for 20 to 30 seconds. Now, kids are weird so we didn’t think so much of it, but our eyebrows were raised. My wife first noticed it while he was watching TV.
One morning however, he was sound asleep and suddenly he popped open his eyes and did it, half his mouth upturned, “huh huh huh huh huh huh huh huh “….not looking at anything, just… doing it, and then he simply fell right back asleep.
He was not awake or aware he was doing this. This is when we started shitting out pants a bit.
After that, however it grew. And it grew quickly.
What was a “tick” it soon became obvious was some type of seizure and it got bigger and more pronounced. The entire side of his face would grimace and freeze, he’d stare wildly, his eyelid would flutter, his jaw would quiver, his arm would raise and stiffen and he’d go “heh hehhh ehehhh hehehehhhh ehehh heh heh” for a full minute.
And it continued to grow. When it would hit, along with the grimace and weird laugh he would move, doing something repetitively, like turning to the wall, turning back, turning to the wall, turning back, turning to the wall, turning back, turning to the wall, turning back, etc. Arm rigid, that grimace, and after awhile the laugh became a snort. Loud snort. It would go on a for a minute or so.
He would do this 2 to 3 times at night, out of a sound sleep. I slept in his room with him and he’d wake me up several times a night with that “heh heh heh… heh. hehhhhh… heheh…” or that snort. 5 to 6 times also during the day.
While this is happening, please don’t forget, we had a baby. All this is going on and we have a newborn and my wife had a very brutal birthing experience. I am currently in eastern europe, which is a hell hole for giving birth. I mean that. This is not first world civilization and it’s a disgusting hell hole that cares not one, small, tiddle for women’s psychological, emotional, or even physical well being. Don’t get me started on this one. In any case, i digress.
Obviously we, and by we i mean i since my wife had to stay home and nurse the newborn, took him to doctors and of course to a neurologist. He had an EEG and actually had a seizure during the EEG. The EEG showed the seizure, no doubt. The neurologist looked at it and said he had some type of epilepsy and we should start meds.
I mean, of course it’s bloody some type of epilepsy. Jeez, look at this shit.
A few other doctors suggested it could fit psychogenic seizures. By psychogenic, i mean there’s a possibility it’s NOT epilepsy and it’s psychological. They couldn’t prove it, they didn’t have the expertise and it wasn’t their field, but there were some oddities.
That grimace on the side of his face? It changed sides. Randomly. it wasn’t always the same side. The fact that this began just before birth of a sibling could suggest psychogenic. I took him for an MRI (a damn scary experience for a 6 year old). His MRI was clean as a whistle. There’s more, but you get the idea.
There were two columns, one epilepsy, one psychogenic. Both lists were long and you could argue for either. This is important because epilepsy meds are serious. Really serious. The side effects are serious. Their effects on a developing brain are serious. I’m not against them, but you should NOT give them to a child who does not absolutely need them.
So what the fuck do we do?
A very dear friend of ours who does alternative healing methods insisted it was psychogenic from the get go. He was adamant and he cares very deeply for adam.
He thought long and hard about how to try to treat it. Lost sleep over it. Finally, shortly before going to Belgrade to get another opinion and then start meds, my wife and i went to his place, without adam to do a session.
Here’s where it gets weird. Bear with me. This next bit is at times going to sound a little… odd.
Using actupunture, on ME, he recreated Adam’s pathology map. (i repeat, mky little boy was not present) I… inexplicably entered an altered state of consciousness, and trust me, i know a bloody altered state of consciousness when i see one. In a very strange way that i cannot really explain or describer rationally, i became my son. I took on his pathologies and his psychological… state. i don’t know how to describe it. I became him in a very real way, although i was lucid the entire time. My personality changed and i saw and described things from another…. mindset. my little boy’s. I am not, at ALL a new agey type of person. I’m a pretty cynical guy. This is what happened and i cannot explain it fully or describe it raiotnally. Our friend and my wife asked me questions and had me explore and explain mental maps from my son’s perspective. I explained things from my child’s inner, mental perspective. I described things. I could not think entirely like myself. I could not think in complex terms. I answered questions and talked at legnth about the mental images i saw, including mazes and rivers.
We gained a great understanding and formulated a plan based on that. The officially description of what happened from the methodological perspective is, as kooky as this sounds, i took on his pathologies so that i could bring them to the surface for my son. My boy, at 6 years old is too young to go through this psychodrama technique himself.
According to the methodology’s rationale, as his father, i am tied in him in ways beyond the physical, and can do this in his place.
I know this is utterly ridiculous. Prior to this insane afternoon i would have told you VEHEmently the same thing.
The session lasted 4 hours. Afterwards we picked up my boy who was with my wife’s brother for the day, brought him home, and began doing the things i had said were needed from my altered state.
From the moment i picked him up he has not had a seizure. He went from 8 to 9 of these fuckers a day to nothing. Nothing. As of this writing it has been 10 days.
He has changed, though.
What had happened is that he was growing in such a way as to be a “good child”. Always nice. Rarely angry. He became what was wanted from him, but to do so, he pushed all anger, all negative emotion down. locked it down until it only existed as an inner alter ego. He could not pack in any further. it had to come out and so… the seizures.
With the release of his pathological knot and the stopping of the seizures, all of this negative emotion is now pouring out.
He was hell to deal with for the 3 days following that session. He was… holy shit he was a walking rage machine of releasing frustration. All the stuff we never saw because he had it locked away is now pouring out.
It was difficult to deal with and must be dealt with… so carefully it is one fuck of a challenge.
You canNOT, absolutely cannot respond with anger. Cannot. But the pathology is trying like hell to produce an angry response. Obviously, as a parent you cannot be permissive towards unacceptable behavior either. but you also have to let it all come out. It will run its course as long as you don’t fuck up.
Calm, sympathetic firmness. You must hold your ground, but not attach with negative emotion.
I could do this, no problem. I spent weeks swearing i would do anything, ANYTHING if i could make these seizures go away. If this what i have to do, no problem. I would be a rock.
The living Anger Machine lasted 3 days. Then it subsided and my little boy returned.
I had a child who was having seizures, for a couple months. Lots of them. We tried a very weird psychodrama technique, one which the child WASN’T EVEN PRESENT FOR, and boom, from the moment i saw him next, he stopped having them.
There you go. This is not some piece of fiction, this is all very real, this is what my life has been for the past 2 plus months. Different people may have different reactions, but if anyone out there ever goes through this, you are not alone. We were so very alone and so very scared and so very lost as to what to do and so, so very worried. Lots tears shed and lots of self flagellation for being such utterly shitty parents that this could happen. We debated whether to pull him from Kindergarten, i prepared myself for dealing long term with a kid with epilepsy, i watched while he had all these freaking seizures that i couldn’t hug, kiss and snuggle away. I still don’t know what the FUCK has just happened, but suddenly it’s over?
I sat in my storage basement and cried. My wife has cried more in the past 2 months then i’ve seen her cry in the past 2 years.
And now… it’s…. it’s apparently over. Sometimes you simply don’t know what the fuck.
We’ll pick up again posting here on the blog. Actually, Act 1 of the Slender Man Opera is basically done and i’ll be posting the first 2 songs over the next couple of days.