Friday, January 29, 2010

Because We Really Don't Like to Be Bored

Our follow-up with the ENT isn't scheduled until March 1, but I have a strong feeling we will be seeing her sooner than that. Not only because of the sleep study results, which are due in another 4-5 days or so, but because we have a new concern.

We have actually had this concern for a couple of months, but kept it close to the vest amongst all of the other ENT related problems we've encountered recently. I've also kept this new problem quiet because, frankly, it is a little scary to contemplate.

We think Nolan is having seizures.

One day, we were walking in the grocery store and he dropped to the ground, then was slightly confused for a little while. Most of the time, however, he simply stops and stares. We can be walking in the mall, and he will stop walking and stand, completely motionless, for 10-20 seconds. He won't flinch if you touch him, call his name, or pull on his arm. Sometimes he will blink slowly or twitch his mouth.

I have to call our ENT to get in early, or call our pediatrician to get into their office, because we need a referral to a neurologist.

I wanted to get one of Nolan's "staring spells" on camera, so I carried our flipcam with me wherever we went. Usually, by the time I could get the camera on, Nolan would be done with his staring event. I finally managed to catch one, on the way back from preschool when he was in the car.

This is definitely a new wrinkle. I deeply hope we are not seeing seizure activity, but are simply dealing with some "zoning out" behavior. Another thing to take as it comes, I suppose.




TRANSCRIPT: I repeatedly call Nolan's name, while he is staring, then ask him if he wants to come inside once his staring episode is over. He nods yes.

19 comments:

Julia said...

Yeah, you need to get that checked out by a neurologist. If it turns out that it's behavioral, that's good news, and if it's not, (a) you want treatment and (b) it might shed light on the underlying problem. Sorry you have another thing to worry about.

Megan said...

We're thinking of you. Megan

CAUSE ME TO HEAR said...

We'll definitely be praying for him (and you). I know how scary that is...William does the same thing. It's only been a handful of times, but they've never found out why. I did the same thing, videoed it, and let his neurologist watch. She's run a few EEGs and none of them are showing anything different happening after one of his "episodes," but it doesn't really seem to be behavorial either. Keep us posted on what they find out.

PinkLAM said...

It just never ends, does it? Your family will be in my thoughts. Do you know the cause of Nolan's hearing loss and other issues? It just seems like there should be something to tie it all together.

My 16 year old sister does clinical rotations at a hospital as one of her high school classes. She actually experienced the doctor testing for this type of seizure, if it's the same thing. I think they were called absence seizures. They estimated the little girl was having hundreds a day. It's fascinating and frightening all that the same time.

leah said...

We have no idea about the cause of his hearing loss. I'm definitely concerned- we've never even been sent to an Ophthalmologist , which is supposed to be part of the standard workup for a kiddo with congenital hearing loss. I'm going to call our ENT on Monday to move up our appointment- by the time I get our appointment, the sleep study results should be in (killing two birds with one stone that way).

Drew's Mom said...

This is very interesting and I can see why you are concerned. Nolan isn't having a seizure in the most pure sense of the term, but he certainly is "zoned out". I think you are so proactive for trying to move up his appointment. A neurologist visit seems to me like a really good idea. We'll be thinking about you guys!

Lucas'Mommy said...

So sorry to hear that you have another specialist to add to your list and more to add to your plate. I hope you get some answers soon. Thinking about you!

Ericka said...

Miles tends to do that if he's really sleepy. So, I'm praying that maybe Nolan was just a bit tired. Good luck and I hope all the tests come back with good news!

Pattie said...

I will keep you all in my prayers. I am sure it has been very scarey for you to see this happening. I hope all works out and that you can cross off "neurologist" from your list of docs after just one visit!

((HUGS)) to you all. And give Nolan a big hug from Andrew, too!

MB said...

How frigtening. Hope you get an answer soon!

Herding Grasshoppers said...

There are all kinds of seizures, and I'm no expert. Sure, he's not falling on the ground, going rigid and twitching (grand mal), but I think you're on to something.

I've seen mine (when they were younger) look kind of similar when they were really, really, REALLY tired, but not on a repeated basis. I think your "mommy radar" is pretty darn good.

Praying for you guys... get right in to the doc and keep us posted.

Julie

Emily said...

Noah has a history of seizures, but his were petite mal so that we did see the repetitive movements. Seizures are so scary! I definitely recommend a pediatric neuro appointment. Noah never had anything abnormal show up on an EEG (although doctors have witnessed his seizures and assured us they ARE seizures), so you may not get an answer but it's definitely worth looking into (and treating if they do find something). Good luck!

Kimmy K said...

Oh Leah, I'm so sorry. Nothing like adding another worry to the long list, not to mention another doc. We will be thinking about your sweet little guy.

Kristen@nosmallthing said...

Oh goodness...I think you are wise to check it out. If it turns out to be nothing, then at least your mind will be at ease. But if it is something more, then you can know how to treat/handle it.

Good luck! I am thinking of you!

Krystal said...

We will rest that God Almighty is able. He is revealing Nolan piece by piece. We will be praying for firm steps and clear vision for the dr and you guys as well. Stand firm in His Word Leah. One day at a time sister!

rouchi said...

Gosh, another matter to worry about. I pray its nothing to worry about and may just be a momentary behavioral issue.Try playing his favorite song, ask him for his fav cookie or chocolate which you would normally refuse.Maybe he would react. Just try, all the best Leah.

...Me, myself and my C.I journey... said...

Leah,

I don't think you know me, but I am one of melissa's friend,I found your blog through her blog.

I was reading this blog post about Nolan having 'possible' seizures... I know how you must have felt since I have epilepsy. I can never remember what happened after I've woken up from a seizure. My boyfriend/friends/ family worry a lot and are scared when this happens. I feel for you and nolan. It must be scary for you.

I recommend you to get him checked out by a neurologist, that way you'll find out if it is that or not. I hope it's not that, because you don't deserve to be worrying about nolan and he does not deserve this also.

If you want to chat to me about it, you are welcome to email me via facebook. Its up to you if you want to talk to me as I'm happy to talk to you about my experiences and so on. My name, on facebook, is Kara May Stevens.

Thinking of you and Nolan.
Kara.

Hetha said...

Aww. Poor little sweet boy. We have seen this with Ethan as well, though it has been a couple of years. He has had the sleep study as you know and the EEG didn't pick up any seizure activity, but that doesn't mean it isn't happening. I sincerely hope that your sleep study gives you some special insight into this, but if not, then I think the neurologist will be so happy to see that you've recorded some of the events on camera. Keeping you guys in our thoughts and prayers Leah.

tammy said...

I don't blame you one bit, this is scary. Very smart to get it caught on camera first hand. I hate you have another thing to worry about. We're sending many prayers your way!