I know you were wondering about Daniel

Well, I went in to see the doctor yesterday to get the EEG results from the test we did last week.  The doctor and I do not see eye-to-eye on a couple of points, but besides that, he’s an okay guy. He was straight-forward and laid it on me – the neurologist wants to see Daniel as soon as humanly possible.

It seems that the EEG revealed that our little man may have Lennox-Gastaut Syndrome. If you don’t feel like clicking the link, here’s the skinny:  it’s a rare form of childhood onset epilepsy that is highly resistant to treatment and often doesn’t go away.  (That’s the very short version.)  According to some preliminary reading, it seems there’s a correlation between kids born with cord complications and LGS.  I’m kinda wishing someone had told me that so that I would have known it was a possibility instead of casting around for the last year and a half, trying to figure out why my kid was having progressively worse seizures.

The complicating factor is, of course, the autism.  This is the thing that the doctor and I don’t agree on. He says that there’s no way to assess Daniel for autism because of the presence of the epilepsy. I say that the autism is a separate issue and that there are two distinct presentations that we’re dealing with but that they are independently observable.  The slow development, the difficulty reaching basic milestones, and things like that are all part of what is potentially LGS.  The patterned behavior (doing the same thing in the same order whenever he goes outside or into a particular room), the need for specific instruction, and the weird emotional quirks would be the autism.

The frustrating part for me is that I can see an enormously intelligent kid in there.  I can see him trying so hard to say the words, to find a way to express himself, to even remember what the thing is that he’s trying to identify… and he’s even come up with his own lexicon and pattern of association to work around it.  This is a pretty typical autistic behavior, an indication of that brilliance.  But the epilepsy hammering his brain all the time means that any gained ground is only temporary, and we’ll have to go over the whole thing again later.

I don’t mind that.  It doesn’t bother me.  Even giving him pharmaceuticals at this point doesn’t bother me.

What bothers me is what might come next.  One of the indicating points is how difficult it is to treat.  The drugs only last for so long, and then there’s the possibility of a brain implant or even a corpus callosum surgery, neither of which are happy-fun-time.  It’s a constant uphill battle against seizures that can come out of nowhere, hit like a ton of bricks, and leave the kid reeling for hours.  LGS kids (and adults) are constantly on the prowl for something – anything – that will work.  They have to be.

I remember looking through the epilepsy sites last year, trying to find a direction to even start looking, and when I happened across LGS, I remember thinking, “Good gods, I hope that’s not what we have to deal with…”

(God?  You listening?  Kiss my ass, You jerkwad.  It wasn’t a dare.)

And yet, at the same time, I’ve been through worse.  At least Daniel is here to have this problem.  I know if someone had asked me to make a choice – to let him die (which, as you may recall, quite nearly happened) or to let him live knowing that this would be an eventuality – I would have chosen to let him live, hands-down, bonked noggins and all.  Hell, if that had been a choice for Toby, I would have said the same thing, knowing that he was going to be even more challenging.

Here’s the weird part:

The twisted part of my brain ties it all in to the science-fiction side and wonders if this is part of that next phase of human evolution I keep talking about.  Every evolutionary step has casualties, it’s true, but the strongest contenders for the “next big thing” have to overcome the apparent disadvantages of their mutation/adaptation.  What if this is one of those times?  What if doing something radical like DNA activation or “brain surgery” with Reiki would help his little body adapt to this stage and maybe become the harbinger of a whole new race of genius people (who also happen to be dashingly good-looking)?

Regardless, the fight is not over, and I do not take “screwed” for an answer.  If there is a solution to this problem, you can bet your sweet ass I’m going to find it.

 

2 Replies to “I know you were wondering about Daniel”

  1. my grandson Phoenix is 3-1/2 and autistic. high functioning, loving, and bright but has seizures that seem to be difficult to control. I have been a medical transcriptionist for 20 years and I agree with you about autism and seizures being separate issues for treatment. I also have very strong convictions that autistic kids have some kind of extra ability to sense things that typicals do not, I do not know where you are, but I have heard a lot of good things about Dr. Stephen Luber, pediatrician who specializes in autism. he is located in Rockwood Clinic, Spokane washington and is also affiliated with Northwest Autism Center in Spokane. I live in Las Vegas now but I hope to be able to send my daughter and Phoenix up there for a consultation with him. I will keep you and Daniel in my thoughts.

    1. I really appreciate that, Cynthia. I will share with you some of the recent things that seem to be working really, really well. In addition to the Keppra, which we’ve been increasing steadily, we also give him a folic acid supplement twice a day, two Min-Tran from Standard Process twice a day, and a half a Multizyme twice a day, which is a digestive enzyme. The Multizyme seems to help with sugar-handling very much because even with a strict diet, things still slip through. For a while, we were using a super papaya enzyme, but I’m thinking he reached his required point for that and no longer needs it. Even with the Keppra increase, he was still having some breakthrough seizures of the “twitchy” variety, but the Multizymes knocked that out. Now, he only has a few minor ones where he has a small myoclonic and then gets stuck in “loop” for a few minutes, and then he’s fine.

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