The High Wire Act That’s Been Our Lives For The Past Month & A Half…
October 4, 2012
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Now Reading: The High Wire Act That’s Been Our Lives For The Past Month & A Half…
October 4, 2012
I’ve been relatively quiet on my blog and Facebook Page the past few months. But I figure it’s time to update y’all on what’s been going on. No really big things good or bad, but alot of little bad things that can add up to drive me (and the wife) crazy. Ok, where should I start.
SEIZURES & ANTI SEIZURE MEDS & THORAZINE
So as you all know by now, Kyle starting having seizures in mid-May and went on the drug trileptal immediately after. All was fine for about two months, and then in mid-August he started having some dizzy clumsy spells. Were they side effects of the med or mini seizures? For a few weeks we decreased his trileptal based on a neurologist’s advice. After a few more weeks of dizzy/ clumsy spells the neurologist asked us to slowly increase his dose of trileptal. So far so good? Kinda sorta. Also, any increase in Trileptal comes with a drug test cuz a common side effect of the drug is hyponatremia. So we have to check the sodium level in his blood after 2 weeks at each new dosage. Fun stuff.
Also because of his dizziness/ clumsiness, we asked Kyle’s psychopharmacologist if he should come off his tiny dose of Thorazine. Remember Kyle takes klonopin & Thorazine due to his “summer of rage” in 2011 and he’s been great on them since September 2011. But stupid me, I googled Thorazine and seizures and saw that Thorazine can lower the seizure threshold in people who are susceptible to getting seizures. So I asked his dr if he should come off of it, and in my words “I’m not sure exactly what the Thorazine did for him anyway”
Well, we don’t have the summer of rage back, but at times we’ve got a much more hyper kid, who has a lot of his ADD / ADHD tendencies back. Boy, I guess the Thorazine was helping him. Duh! But on paper it made sense taking him off (I keep telling myself).
Against all of this was our mid August discovery of a nice sized lump on Kyle’s groin area. Pediatrician & urologist determined it was an Inguinal hernia. They said Kyle’s not in any pain and it didn’t need immediate surgery, but they scheduled surgery for September 19th. The whole time Kyle is showing no signs of discomfort. And as the weeks go by the hernia comes out more and then a few days before the surgery date, it totally disappears. I’m thinking “maybe he doesn’t need surgery” and reading on the web that surgeons will always choose surgery but it’s not always necessary. So on the day of the surgery, Wednesday September 19, I ask the surgeon if he needs the surgery and of course he talks me into it and everything he said made total sense…
Surgery was quick and easy, Kyle came out of it nice and we went home later that afternoon. Kyle seemed himself, no problems. He had us fooled. The next day when the anesthesia wore off he was in a lot of pain. A lot of moaning. Wife gave him the Tylenol with codeine they prescribed us “just in case” and he needed it… But we think that the codeine made him constipated. And Kyle was a kid that used to have major stomach issues/ pain and that wasn’t good. Basically after the surgery and codeine he wasn’t himself for quite awhile. Had some mini-meltdowns, some biting, again some of the old “summer of rage” behaviors.
Every time one of these behaviors creeps up it scares the hell out of me. It reminds me of the way things used to be. I put that stuff behind me, and I actually forget some of the behaviors and when they come back, it’s like total recall to when we needed to take all the toys out of his room just to keep him safe. Back in the summer of ’11 we were like 1-2 bad meltdowns away from his bedroom having no furniture and just a mattress on the floor. This is before the miracle of klonopin & Thorazine. Anyway, so some of those behaviors are back. Not the violent side of them, but they hyperness and the biting, etc. And it makes me afraid that we are heading there again.
Long story short, hernia surgery was successful. Caused him more discomfort than we expected. With that came some constipation, and a return of some old/bad behaviors. And now the discomfort is gone (we think) and the constipation is gone (we think), but of course some of the bad behaviors have remained.
LACK OF APPETITE/ FEEDING ISSUES
He’s had a horrible appetite for YEARS now. (I wrote about it in June 2011 that you can read HERE). In a sick way, I keep wanting someone to prescribe him a med that has weight gain as a side effect so we can put some pounds on this kid. I wrote about his feeding problems a long time ago. You can read that HERE. And everything I wrote there still pretty much applies today. I come home from work most nights to find Kyle strapped to his seat in the dining room with his Ipad blasting an episode of Sesame and a smorgasbord of choices in front of him and the wife frustrated that he won’t eat anything. She then proceeds to stab a piece of hot dog with his fork and then prompt him to pick it up and eat it. This is pretty much bite after bite after bite until the wife feels like he’s eaten a decent amount or he frustrates the hell out of her enough that she unstraps him and sends him back to the playroom. It’s when I see her physically fork-feeding him that I start to lose it. I hate feeding him and I will not fork feed a 9 year old. I’ll stab the hot dog, I’ll prompt him to pick up the fork, but I won’t fork feed him.
The feeding issues are extremely frustrating. I’m always of the mind of “he’s not going to starve himself. he’ll eat when he’s really hungry. he has to. it’s a human survival instinct.” But that’s not necessarily true with the king. Sometimes he’ll be having a mini-meltdown and I’ll say “when was the last time he ate anything substantial?” Last week I was driving him to school and he was having a mini-meltdown and I figured it was hunger based. There was a Tupperware filled with cheerios right next to him in the back seat (left over from the last time I drove him to school the week before 🙂 And I said “dude eat some cheerios!” Nothing. He’s just acting all mad and ornery. I reach back (while I’m driving) and grab a handful of cheerios and put them next to him and say “eat some cheerios”. He pushes my hand away. Then I say with a stern voice “Eat some cheerios!” He very delicately takes two o’s, nibbles them down, and then that opens up the floodgates and he seems to realize that he’s starving and he proceeds to eat the rest of the o’s in the Tupperware. Meltdown over, kid happy, enters school with a smile on his face. WTF??
The feeding thing is CRAZY and every once in awhile he goes thru a day or two where he seems like he doesn’t like cheerios or popcorn and the wife and I get freaked out. Cuz if he loses his love of those two foods we will be screwed. Cheerios & popcorn have probably kept him alive these past 2 years! 🙂 I’m only slightly kidding.
HOLDING BREATH / BREATHING ISSUES
This has been going on for years. Kyle holds his breath all day long and in any situation (happy, sad, being challenged, relaxing, by himself, with people, whatever). It got a bit crazy last November and they kicked him out of school because of it. They were afraid that he was going to pass out and/or cause major medical damage to himself. I wrote a bit about the breath holding issues HERE and the school kicking him out HERE. Since November 2011 he’s been seeing a behavior therapist who’s been working on a behavior modification plan…
You know what? That’s a whole other blog post. I’m gonna save the Holding Breath / Behavior Modification plan for a later blog post. There’s just way too much to talk about there. 11 months worth of stuff. So stay tuned about that.
I’m gonna end it here. So that’s what’s been going on with us the past month and a half or so. Nothing horrible, but just a lot of little things that add up to make life a wee bit stressful.
Anyway, there you go. The end.
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).