Sunday, November 29, 2015

Medical Issues w/ a Nonverbal Kid: If Only We Could Ask "How Are You Feeling?"



It's Sunday at 8:47am and I'm having coffee in a quiet house watching the king sleep on his seizure camera / monitor

As you all know the king has autism and epilepsy. 

On a smaller scale he also has a bit of hypothyroidism. He is on medication for all three of them. 

And as you can imagine, the epilepsy is the scariest the bunch. The autism I can deal with. The hypothyroidism is a mystery and only truly shows up in blood work. We see none of the usual signs of it. 

But the epilepsy can be scary.

And the king is going through a relatively good stretch
with very few seizures in the past few weeks. That should make us extremely happy. And it does.

However, he's also been sleeping 14 hours a day for the past few weeks as well. 

He'll get up and stay up for four hours, then take a two hour nap then get up another four hours, and then take a one hour nap and then be up for two more hours and then go to sleep for the night. 

That's pretty much been his pattern the past few weeks both at school and at home. And it's kinda pathetic for a 12-year-old boy to be sleeping 14 hours a day. 

When he's awake, for the most part he's himself. Maybe a little more lethargic than usual. 

But the constant sleep is getting in the way of his life. 

And there could be a variety of reasons that he's sleeping so much. 

He could be having seizures that we don't see when he's awake or in his sleep. And lots of seizure activity can make one sleepy. 

Or the tiredness can be a side effect from a new epilepsy medication that we're increasing slowly.  (but I don't think it's that because at the same time we're reducing another seizure medication slowly so the sleepiness from the two meds should balance out) 

Or maybe his thyroid levels are off and he's due for an increase in his Synthroid/thyroid medication. 

Or he could just be a typical teenager and is just lazy and is going through puberty. 

Or it could be a combination of all four of those. 

But the fact that we have to guess is the hard part. 

Sometimes living with a nonverbal pretty much noncommunicative kid, you forget that the rest of the world doesn't have to guess. 

They can just go up to their kid and say "what do you feel like?  Why are you so tired? Is that medication giving you a headache? Are you feeling nauseous from the medication? Is that why you have no appetite?"

I'm written many times before that I am pro-medication for a variety of different reasons but that doesn't mean that reading all the side effects doesn't scare me. 

And sleepiness is just one of the side effects that he may be experiencing from the meds. Who knows if he's having any of the other side effects?  

Feeling achy, headaches, nausea? 

Or one of the ones that is almost always listed on anti-seizure medications is possible depression. And a sign of depression is lots of sleep. But how do we know if our nonverbal, non communicative kid is depressed?

And it's so exhausting that the fact that my wife and I have to constantly be detectives to try to figure out why something is bothering him or even if something is bothering him

Right now we have to weigh whether or not that significant amount of sleep is really an issue.

 Because as I mentioned he seems to be having seizures which is the most important thing I guess. But it seems like his quality-of-life is being hindered by all the sleeping. 

So is this an emergency situation?  One that warrants more doctor visits and blood work and medication tweaks and tests? Or do we just stay the course and see what happens?

Basically we have to decide is this a crisis?  Or just a bump in the road?

And it feels like we have to make those kind of decisions every couple of months. 

We get past one small(?) "crisis" and another one appears. 

In fact it almost feels like we've been down this exact road before. 

We reduce his seizures but we get increased sleepiness. 

We figure out the sleepiness part and his aggression increases. 

We try to tackle that and the seizures return. 

And again it's all based on guesswork from mom and dad and doctors. 

I wonder how many different period of crisis in his life could have been avoided if we could ask him how he felt. 

I wonder how many wrong turns wifey and I have made because he couldn't tell us how he felt. 

I know lots of parents of non verbal kids always say they wish they could hear their kid say "I love you". 

That would be nice but I'd be much happier if my kid could say...

"Mom I feel dizzy."

"Dad, my legs feel really achy since we increased that new medicine"

"Mom, I'm feeling really tired." 

"Dad, I'm not hungry. I'm feeling nauseous.  Stop trying to force feed me popcorn!"

That would be my dream!

Ok I'm gonna end it there. 

I'll just end this by saying that epilepsy sucks and me and wifey having to be detectives all the time (and bad ones at times i suspect) sucks which means that the nonverbal part of autism really sucks!

Gotta go!    It's now 9:33am and his majesty is finally starting to wake up after 11 hours of sleep. 

THE END



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6 comments:

  1. I feel the same way, We have triplets on the spectrum and one is non-verbal, low registration with an atypical pain response. With tummy trouble and a tendency for ear infections. I would be ecstatic with "where does it hurt?" and having him point.

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  2. You probably have but in case you haven't I read about Oxytocin and its positive effects in a study of Autistic children. It's worth a Google if you haven't.

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  3. For once I hear another parents fears that sound like my own. We have a non verbal 19 year old with epilepsy and Like you the seizures are the scariest . Last week our son had 3 major seizures and fell during them and broke an ankle. So now with non- verbal autism , epilepsy we have a son who can't walk or use crutches. No explaining that to him :( when I get overwhelmed I think of u and your family and I feel like wow someone else has the same experiences as us- thinking of u wifey and King :)

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  4. I always say imagine how Zac feels? He can't say if he has a headache, if his stomach hurts ect.. From my experience with seizure meds and my son. Who by the way is now 22 non verbal and living in a group home 15 minutes away, His body got use to the depokote it was keeping the seizures at bay but killing the rest of him. He wouldnt eat all he did was sleep. He didnt enjoy the things he use to love like the beach. After finding out finally although his Dr. thought his levels ran hight but wasnt having seizures so kept upping the dose. We finally switched up new team of Dr.'s new med cocktail of a couple of seizure meds that are newer. The king sounds just like all of out kings they got us wrapped around their fingers. Good Luck

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  5. Can your son communicate by writing, typing or a communication device? Have you tried the Rapid Prompting Method (RPM)? That might help.

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  6. A non verbal severely mentally impaired boy in my class was crying a lot. Crying is very unusual for him. Suddenly his ear began running blood and pus. Mom took him to dr and his ear drum had burst from massive infection. He must have been in terrible pain. My heart breaks for you parents of these kids and I hope you each have all the support you all need in your endeavors.

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