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When Should We Stand Pat?

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So last week I wrote how I don’t believe in jinxes and how the king was going thru a great stretch behaviorally.

Wifey & I went to the Halloween party in his class on Friday and I got a lot of face time with his teacher and she said that although he usually still has a rough patch each day, the king was doing much better behaviorally.
Then after that, he had a pretty great Halloween weekend.
So great that I said to wifey, “when is the next neurologist appointment?  i don’t think we should change any meds at the next appointment.  i think we should stand pat for a change, and just leave things where they are.”
As many of you know the king has
epilepsy in addition to autism, and goes thru phases where he has small seizures daily, and in early September he went for his now annual overnight EEG, and that was followed by a med adjustment.
We started a new med, and went down on an old med.  And the thinking was at the next appointment, depending on where his seizure activity is at, we would probably be going up more on that new med, and coming completely off the old med.
But what are the most common side effects of all these meds when it comes to his majesty?  Sleepiness & aggression.
So in the few weeks after the EEG we had a kid who was sleeping A LOT and had quite a bit of aggressive behavior at school.
But fast forward about 5 weeks and last Friday after visiting his school I was looking at things and found myself thinking thoughts like this…

“He’s doing pretty darn well!   I didn’t even notice it, but he’s been doing pretty great for a few weeks now!  He’s still sleeping more than we’d like, but not an obscene amount, and when he is awake, he is a pleasure to be with.  Plus the school has never seen any seizure activity and we haven’t seen any in a few weeks as well.  Maybe this formula of meds is the way to go for awhile.  Maybe we should stand pat.”

So,of course, like clockwork he had a nice size seizure Friday evening during a nap, and another one Saturday morning in his sleep.  His first bigger seizures in almost a month.  Both seizures lasted about 40 seconds.
But the rest of Saturday & Sunday, no more seizures, and again he was a pleasure to be with.  Just chilling, happy, going with the flow.
And here’s the weird thing about the place we are right now with the king’s epilepsy.  The doctor’s goals are always to work towards absolutely no seizures, and of course that is our goal too.  But when he’s having a great stretch behaviorally I still find myself thinking:

“Ok, he still had 2 seizures but I think we should still not change anything with his meds.  I don’t want to rock the boat with his behaviors.

And that sounds crazy, right?  But epilepsy and seizure control is all about improving the patient’s quality of life.  Seizures take a lot out of a person and are scary.  But tweaking meds take a lot out of a person too and also affect their quality of life.  So over the weekend I was thinking to myself…

“I’ll take a couple of seizures a week if it means this awesome kid who’s doing well in school and is happy and mellow, and not napping an obscene amount.  I’ll take a couple of seizures a week over tweaking meds which usually means 4 weeks of lots of zombie sleep and lots of agression while he adjusts.”

So, of course, like clockwork, Monday, yesterday, the king goes to school and the teacher reported that he had a really, really rough day behaviorally.  Then I get home from work at 6:30pm yesterday and wifey reported that he’s been sleeping since 4pm.
Then today he is off from school for Election Day and wifey is reporting to me via text that he’s been napping on & off all day.
So bad behaviors at school are back, check, and he’s napping an obscene amount, check.
So now what do we do?  I know it’s only two days, but I know his majesty, and this is his MO.
So, do we stand pat?  Or tweak meds?
It always feels like around the holidays every year either the king is a terror behaviorally for one reason or another, or we are changing some meds or protocol, or doing something new, and he’s not himself because of it.
And my gut tells me this holiday season will be no different.
Well I guess we will be standing pat at least until the neurologist appointment which is mid-November I believe, and then we will see what he has to say.
And in case you don’t know much about epilepsy and the treatment for it, it’s just as much a crap shoot as autism is.
Depending on the types of seizures you are having & what side of the brain they are coming from they’ll try you on this med for awhile, and if that doesnt work, then they’ll switch you to this med, repeat, repeat, repeat.
That’s it.  That’s all I got.  This epilepsy really sucks, and it makes you have these weird thoughts and have these weird tradeoffs in your head.
That’s it.  Over & out!
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Written by

Frank 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” :-).

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8 People Replies to “When Should We Stand Pat?”

  1. Anonymous

    Finding effective treatment for epilepsy in autistic children is very challenging. Most seizure drugs cause side effects. Our children react very badly to these side effects, which then creates a behavioral issue that everyone focuses on instead of dealing with the seizures. Once the seizures are controlled the behaviors increase and then everyone focuses on the behaviors. It would be awesome if pharmaceutical companies could create epilepsy drugs that were also good for behaviors.

  2. Ugh, I'm so sorry! Epilepsy sucks bad enough on its own, but to pair it with autism too really is shitty. 🙁
    Hope things improve soon and The King starts feeling much better.

  3. I have epilepsy and my 4yr old has autism. My seizures have been successfully treated with Topamax. Down side is memory loss (when you hit a certain dosage) and feet and hand tingling.

    I totally feel you on the med stand point. With my guy – it was sleeping and the fact he didn't. At all. For 3 years. He would go to bed at 7, and wake up at midnight ready for the day. Which didn't work for anyone. So, after many, MANY trials and error and many sleepless nights and breakdowns from me and him, we got him on the right meds.

    Now the problem is – on the nights he wakes up or doesn't sleep – do we stand pat?? It's a form of PTSD. And it's terrifying. It's also the same when I have to mess with my epilepsy meds. The whole situation sucks – but apparently I was meant to handle it cause here I am. Lol.

    Much love and light to you, the King & Wifey. Hopefully his next neuro appointment has some awesome news.

  4. I forgot to mention I have an 11 year old boy with Autism. At this time he does not have Epilepsy.

  5. I have Epilepsy. And I totally get where you are coming from. I am in my early 40's and after a long period of not having any…. like since i was a baby; I started having them again in my late 20s. I think i went through about 4 or 5 different combinations of meds before we got it right. I have now been siezure free for about 3.5 years. My siezures come from 3 areas of the brain and from both sides. You and your wife are doing a great job. By the way, I have Cerebral Palsay which is believed to be the main reason for the Epilepsy.

  6. I have seizures myself, and my son has autism. I know that around this time of year with the season and time change, both of our issues tend to flare up and be really crazy. Goob will go through a huge regression that usually lasts from December to March, and I have amped up seizure activity for about two months. I'm not sure what it is, but maybe it's like the autism and the full moon thing? Add daylight savings/ season changes to the weird things that affect people with neurological issues.

  7. Epilepsy does suck…took us a good 5 years to get the right meds, dosage, etc…and our son (who also has autism) still, at 25, has some seizure activity while sleeping. It is minimal so we keep his meds the same. I hope you guys can come to a happy medium that you can all live with. We ended up adding a blood pressure medication to help with behavior issues. It worked like a charm after he got settled on it. Take care!

  8. Is the time change making him sleepy every year?