Sunday, May 5, 2013

Autism Better, Epilepsy Worse? An update about my son...

It sometimes takes me a few hours to write a blog post.  I'll start it and then put it away for a few hours when life takes over and pick it up later when things calm down.

Anyway, I'm starting to write this post on Saturday afternoon at 5:08pm.  Kyle has been asleep on the living room couch for about 90 minutes already.


He had a couple of nice size seizures today, the kind that make him nap afterwards, so that is why he is sleeping.

People always ask "what kind of seizures does kyle have?"  "does he have grand mal seizures"

It will be a year in late May since we took the Epilepsy Expressway to Seizure Street and I'm still not sure exactly what kind of seizures Kyle has.

I know the big ones where his eyes are open and pupils either rolled back or to the side are the "complex partial seizures".  These last in the 15-45 second range.   And back in the fall of 2012 he was having "drop seizures" also known as "atonic seizure" where he would lose his balance for a second and DROP, usually backwards.

And he also has silent seizures also known as absence seizures which are hard to identify because they look like he is staring off into space for a few seconds...but he does that all the time cuz he's autistic :-) lol...  but we think we are better at noticing them lately...he gets a goofy grin and does some weird movement with his thumbs when having a silent seizures.

Anyway, we haven't seen those drop seizures in awhile, but we are still seeing the silent seizures and more recently a return of the bigger complex partial seizures.  The ones big enough to make him nap.

Basically Kyle has a form of epilepsy called Lennox-Gastaut Syndrome.  Here's the Wikipedia definition of this syndrome.


Lennox–Gastaut syndrome (LGS), also known as Lennox syndrome, is a difficult-to-treat form of childhood-onset epilepsy that most often appears between the second and sixth year of life, and is characterized by frequent seizures and different seizure types; it is often accompanied by developmental delay and psychological and behavioral problems.


Basically it is a severe type of epilepsy that is difficult to treat with medication.   Oooh lucky us!

Kyle is currently on the meds Depakote & Onfi and the seizures that he is having lately are "breaking through" the medication.  We saw our neurologist a few weeks back and she may be changing his meds again soon, but first we are going to do a 24 hour at home "video EEG" to get a better look at the types of seizure activity he's having. That is scheduled for later this month and should be a torturous 24 hours for all 3 of us.

The neurologist also told us to start googling VNS Surgery because this may be in our future if his seizures continue to be resistant to medication.  Basically he'll go on every antiseiure med until we find one that works to make him almost seizure free.  And if we don't ever find that med, which is common with people with Lennox-Gastaut syndrome, the surgery may come into play.

VNS stands for Vagus Nerve Stimulation and is a "minor" surgery where they implant a pacemaker type device inside your chest and they wrap an electrode around a nerve.


It works with magnets, is not considered a serious surgery, does not involve operating on or near the brain, and helps lots of people with Kyle's type of epilepsy.

You can read all about the VNS Surgery HERE

So all this seizure & surgery stuff sounds extremely scary and we must be completely stressed & freaking out, right?

Not really.

I mean when the big seizures happen we get stressed and the days leading up to the EEG will be stressful. And if we ever have to do the surgery, maybe a year or two down the road, we will completely freak out...but the day to day management of all this stuff has been pretty easy.

Why? 2 reasons

1) First, because he's never had a seizure that lasted more than 45 seconds. We never had to deal with what we've heard about from others... seizures lasting a LONG time. 5-10 minutes or longer. Knock on wood we've never had to deal with that. The types of seizures Kyle has are short & sweet and manageable. He has them and then goes about his day...or he has them, naps and then gets up and goes about his day.

2) Since December / January he's been awesome behaviorally and seems to be making the most significant progress in years. It's like his epilepsy is getting worse and his autism is getting better. The past few weeks especially we've seen a TON of really positive things.

He's just more aware of his surroundings and has stronger opinions and tries to get his point across and let you know his wants and needs instead of just blindly going with the flow.

Here's a few examples.

At home he's been taking us by the hand and leading us to what he wants. Leads me to the tv, leads wife to the kitchen, leads me to the staircase when he wants to go to sleep.

He's totally more aware of his surroundings. We went to this big kid friendly supermarket today and he headed right to the ice cream stand, knew exactly where it was. And he wanted ice cream and let us know.

At the playground last week I guess he had enough and he wanted to leave cuz he spotted our minivan about 1/4 mile away across this huge grass field and walked straight to it...with purpose.

He's kinda using the signs for hungry & thirsty when he's actually hungry & thirsty. In the supermarket today wifey put a bag of pretzels in the cart and he grabbed them and handed it to her and touched his chin. He got his point across.

There's tons of other examples that I can't think of right now but it seems like he's going thru a wee bit of an awakening.

Could the seizures be helping? Or could one of the anti seizure meds be helping? Or would this progress be happening regardless?

A few of you have hinted that his brain might get a bit rejiggered and progress could come with puberty. Maybe this is from that? He'll be turning 10 years old next week.

We don't know what's causing the progress but what we like what we are seeing.

Now let me take a step back and say that it's not all great & sunshine & rainbows around here by any means. I forgot to mention that due to the seizures or the meds or growth spurt/ puberty (?) he sleeps a lot, and gets tired quick.  He sometimes sleeps 12 hours straight from like 7pm - 7am which we don't always love.  Sometimes it feels like he's sleeping his life away....and we have to back up his plans & activities to fit everything in before he begins to get tired & ornery by 6pm .

And he still holds his breath constantly. I need to write a post about the breath holding. It's been going on for almost 3 years now. But it's definitely getting worse and getting in his way. There's sometimes when he's so concentrated on holding his breath that he can barely do anything else. Sometimes he can't walk from the car to the house cuz his breath holding is getting in the way / consuming him. And I think sometimes the breath holding might help trigger some of the seizures and/ or dizziness.

So we've still got TONS of behavior issues to deal with.

But when he's not having seizures and he's not sleeping and he's not holding his breath and he's not raging from being really hungry...when he's not doing any of those things then he is just an absolute pleasure to be with.

He has a few stretches each day where he's really related and is so happy to be sitting in his nook reading books or on the couch watching tv or eating like a big boy at the table or eating popcorn in the minivan or swimming in the indoor pool.  And during these stretches he is awesome and affectionate and sometimes verbal.  We hear a lot more sounds & vocalizations from him lately, lots of "lo lo lo lo lo lo"  :-)

So the wife and I are just living for these stretches of the day. They help fuel us and help us get thru the seizures and meds and breath holding craziness.

And so far the wife & I are still staying pretty even keeled and handling all this better than we probably should be. Perfect example he had a seizure at that supermarket today and we very calmly put him in the cart and wheeled him out of the store. He was already fast asleep in the cart as we made it outside. It barely phased us.

It is now 8:26pm. The king got up from his seizure induced nap completely happy around 6pm. Had one of those nice stretches I was talking about. Had a big dinner. Had his evening meds. And is now watching Dora while holding his breath like a maniac and pushing his fist against his neck and kinda staring into space a little. It's starting to drive me crazy.  Did I mention that sometimes when he holds his breath that he also pushes his fist hard against his neck, pretty much against his jugular?  Oh yeah, add that into the mix.  Tons of fun?  He must get quite a high that way...but again it gets in his way and drives me crazy....So now I have to make the decision do I give him melatonin even though he took a 2 hour nap today? 


Wow what a long rambling blog post! It is now Sunday at 4:18am and I'm finally done writing this mess.  I didn't give him melatonin before.  He fell asleep around 9pm and then woke up happy laughing at 3:30am and we are now back in the living room watching Dora again and eating cheerios....

I'm gonna end it here...

The main takeaway here is it just seems like his epilepsy is getting worse and his autism is getting better.

Goodnight all!

THE END... 




19 comments:

  1. You shop @ Stew's? :) Big favorite in this house, too! -- Cathy

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  2. I know an adult who had the same surgery you mentioned. When I care for her I wear the magnet around my wrist in case she has a seizure.

    I'm glad you guys take it one thing at a time, if not it consumes you!

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  3. my daughter is the opposite if she has seizures they are the big one lasting 5-10 minutes. So now we are on Depokate also and no seizures knock on wood. The last two we ended up in the hospital but hopefully Depokate will take care of that.

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  4. Our son, age 12, has autism, significant developmental delay, and seizures. He had the surgery a few months ago. Not only are we already seeing fewer seizures, but his mood and behavior have improved noticeably. For one thing, he is becoming less rigid in his routines. I told the neurologist this week that even if we don't get total seizure control from the surgery, I am still glad we did it because of his improvement in mood and behavior. Those things affect his life more than the seizures did.

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  5. Our six year old son has gelastic seizures as well as severe, non-verbal autism. His seizures are either fits of laughter or rage that he cannot break out of until they stop on their own. The laughter is forced and obvious, to me at least, that it is not his typical, happy laughter. The rages are horrible and can last and last. He's on medication for it without an "official" diagnosis because they won't give the diagnosis without an EEG and there is NO WAY that he will sit still and let them put the wires on him, let alone leave them there for how long they want. We took videos of the seizures and our neurologist "diagnosed" him from those. Luckily, his medication is helping and we went from 4 or 5 a week to maybe 1 or 2 a month.

    Gelastic seizures and autism are as hard for people to notice as absence seizures and autism because the symptoms are so similar. Staring off at nothing and laughing at inappropriate times.

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    ReplyDelete
    Replies
    1. What about a Scottish wife.?

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  7. Have you researched the ketogenic diet? Doesn't it make sense to try a diet before ANY surgery?

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  8. Hi firstly thanks so much for your blog, you may not think it gives out so much hope but it does. I am a UK mom and have just had my child diagnosed with severe autism ( Like Kanners, non verbal etc ), We knew My son was very severe before the diagnosis, for inumerous reasons we had to wait longer than most. ( I guess thats when most people would sue ) I spent a long time on the phone with a health care proffesional today who I think was waiting for me to cry, I think it threw her/relieved her that I did not, so she could actually speak about my sons needs. We have known my youngest sons needs for along time now, he has Pica, chronic constipation, severe sensory issues, severe communication issues as well as or is his autism. I am very worried that he either is having seizures as you have described mainly as when he is excited he will stop and shake all over.
    We have even thought obviously without diagnosis that it might be a form of tourettes. I have also thought about epilepsy, but it is definately a physical response to excitement or feelings of love. If you have anything/advice ways about the shaking whether it might be fits or is just another facet of autism I don't understand yet anything would be good. Thanks in advance.

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  9. I am so glad to hear that he seems to be doing better, so far as communication & awareness - those things that you pointed out are HUGE!
    We also have a breath holder. Not all the time - but sometimes it's incredibly distracting to me b/c all I can think about, all I can hear is his disjointed, unregulated, breath holding in between breathing. I have no idea what it is & no doctor seems to either. Always comes down to behavioral.
    Anyway, glad to hear that somethings are going well.

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  10. Hi my son will be 10 in August and has low functioning autism, he also suffers from seizures uncontrolled by med and has done for the last 3 years they came out of know where, now to top off that he is purging and I don't mean been a fussy eater I mean he will eat then go throw it up in a sink, toilet whatever he can access to get rid of the food and drink, so now every door is locked he has to be followed everywhere and if he throws it back up and it is an eating disorder he has to have the meal again, he is down to 32 kilos and now has great trouble walking as he is so weak, if he doesn't stop he will be put into hospital and tube feed I just hate the behaviours that come with autism. So not only does he live in this locked world but so does the rest of the family now as we all have to have keys to get into toilet bathroom etc, he can have up to 105 seizures a day and he has nocturnal ones as well, I hate living this way but I love him to death and I won't give up on him,I'm luck to get an hours sleep a night with him as he wakes himself up looking for somewhere to throw up.

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    Replies
    1. OMG. How awful, my oldest (now 23) has Epilepsy but no where near 105 per day. I am sorry- that must be so scary.. Have you thought about medical marijuana? I have heard several stories lately children have gone from over 100 per day to a couple a month. The strain is called Charlottes Web. Look it up, it should be all over the web. Good Luck!

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  11. A word of warning about VNS and LGS: I was guilted into having this implanted in my daughter by her docs and Cyberonics only to learn after implantation from the same doc that guilted me into having it implanted in her that it does not work for LGS. It has since been removed, except for the part wrapped around her vagus nerve which cannot be removed. There is only one MRI scanner in the state that can safely scan her - at the ped. hospital where the device was implanted. The VNS did nothing but exacerbate her insomnia, scar her, and subject her to painful unnecessary surgeries. And made Cyberonics and the ped. hospital a bundle, which they will continue to benefit from re: future MRIs. My daughter has vaccine induced autism and seizures. I learned about your blog this morning on Twitter.

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  12. PS: When I put her on the GFCFSF certified organic diet, her seizures decreased immediately by 66%. She was previously on the ketogenic diet, with no success.

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  13. I have recently received additional information. My daughter can safely have an MRI of the brain at more than one location in our state, however, she can never have an MRI of any other part of her body at any location anywhere. There is a safety device (a type of "coil") that can go around the body parts involved with having a VNS but there are no such safety devices available for other parts of the body. Additionally, before having an MRI of the brain, a child's VNS has to be turned off and then on again following the MRI. What if something happens to a child who needs an MRI for an emergency and there is no device for turning the VNS off? What if, as is the case with my daughter, a child desperately needs an MRI for another part of the body? I hope this information will be of help to you. I only wish someone had explained this to me. Now I have to get another medic alert bracelet for my daughter stating that she can never have an MRI of any body part but her brain and that this safety coil must be used if she is to have an MRI of the brain.

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  14. What happens if a child with VNS parts has an MRI without this safety coil? I am told that the VNS parts will be ripped out of their body at 100 mph.

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  15. My son is 4 year old and suffering from partial seizures. I found him unconsciousness and fall on ground in our garden, our doctor prescribe, trileptal helps to treat partial seizures in adults and children. What other treatment should I go with?

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  16. Today, 2.3 Million Americans live with epilepsy with more than 1 million of them experiencing uncontrolled seizures. CBDs (Cannabidiol) which are non-psychoactive have been proven to help reduce the frequency of these seizures.

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  17. I am a 23 year old autistic man from NZ. I also have epilepsy and dyspraxia. This has been an interesting read for me. I am not non-verbal but speaking is difficult for me. I communicate better on a keyboard. Its a long , drawn out process but I can articulate what I want to say typing, Often the words I wish to say come out wrong if I speak them. I am currently halfway through a Diploma in Creative Writing working on a paper in Creative Non-fiction, which is how I have ended up here, checking out blogs as a form of non-fiction writing. Your blog is great. I love the no nonsense, every-day-Dad approach. Good job. I will be following this one. Thank you

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