Out of Nowhere

It seemed like it came from out of nowhere, and in some ways, it did. But lately I’d been noticing ambulances around town, even those without their sirens and lights on. And three weeks ago I commented on my friend Elizabeth’s beautiful post that the only child I’d witnessed having a seizure was not my own.

A few days ago, Nigel had his first tonic-clonic (formerly grand mal) seizure. He had been on the couch in the living room watching a movie, and I was reading in my office. I started to hear a repetitive banging noise coming from the living room, and I yelled out, “Stop the banging!” When it did not stop, I marched out to the living room. “I said to stop the banging! What are you doing?!” I yelled again, looking at Nigel, whose body was half-off the couch with his legs stuck under the heavy coffee table, banging it. I thought perhaps he was acting out a scene from the movie or laughing in an exaggerated way, but that was before I saw his face. I pulled back the blanket that had been covering him, and then all at once it hit me. The violent convulsing, the profuse frothing at the mouth, the eyes rolling back in his head: He was having a seizure.

I was terrified. My legs started shaking as hard as Nigel’s. I pulled them out from under the coffee table and placed them on the couch and shoved the blanket out of the way. With dread I realized that he was having great difficulty breathing and yelled out to Aidan to call 911 and bring me the phone. The dispatcher kept me calm while waiting for the ambulance to arrive. Nigel’s breathing alarmed me, but after the convulsions stopped, it seemed to come a little easier, although it was still ragged and rapid. The EMTs arrived, checked him out, and tried to insert an IV (which he fought off, even in his semi-conscious state).  Then they placed him on a gurney and wheeled him out to the ambulance.

I rode in the back with Nigel and Aidan rode up front. The EMT in the back asked Nigel questions and he answered them.  Later he would tell me that he had no memory of the ambulance ride or the first two hours in the hospital, even though he was conscious and speaking. I sat there behind my son as he spelled his name in the ambulance, berating myself for yelling about the banging when he was having a seizure. Of course, there would have to be some element of the experience for which I would feel guilt. How long had the seizure gone on before his legs got stuck under the table? Why was my first inclination to yell about it?

Three hours later, everything checked out clean at the hospital (the brilliant ER doctor said that because the CT scan was clear, he might not have had a seizure. Um, yeah, he really did. Guess you had to be there, eh, doc?), and after waiting almost an hour post-discharge for a cab, we arrived home past 2:00 AM. I put the boys to bed and tried for at least an hour to fall asleep, but each time I heard a noise (usually because of the cats), I jumped out of bed and went to check on Nigel.  My mind kept fixating on questions I had about seizures and how they would affect Nigel’s life. What does this mean for his future? What if he has one while riding his bike? Or in the shower? Where do we go from here?

I woke up exhausted and called the doctor’s office. His regular doctor was not in, so we saw another doctor in the practice who recommended a referral for an EEG and MRI. But, with Nigel moving to L.A. next week, there’s no point in receiving a referral here. We’re on our own to find one there as quickly as possible.

Except we’re not on our own. We’re part of this amazing and wonderful online community of families with special needs. So I contacted Elizabeth. And not only did she answer my questions and recommend her daughter’s specialist, she calmed my fears and provided empathy. And I am so grateful. I couldn’t help but remember a post I had written over two years ago about my fear that Nigel might develop seizures in his teens. It was only the third post I had written, so it didn’t receive any comments, but in it, I had asked for other parents’ experience and advice about seizures. And now, right when I need it most, I have it. We are truly blessed to be a part of this community.  

I still have many questions, most of which we won’t know the answers to until the testing is done, and even then, the results may be inconclusive. I still have a lot of anxiety. My legs are still sore from being so tense during the whole experience that night. I still have fears, but I’m trying not to focus on them. I’m trying to focus on the good and move forward, knowing that we’re not on our own.

38 thoughts on “Out of Nowhere

  1. Kim

    Oh dear. My eyes filled up with tears reading this. It is one of my fears as well. I can only imagine how scary that was for all of you. I am so glad he was home when it happened and that there was some noise that you went to check out. Thinking of you all.

    (Oh, and that ER doc–holy cr@p! What IS it with these docs who write you off that way?!)

    Big hug to you.

  2. Eithne

    Oh Tanya, my heart just sank when I read this. What an ordeal. How amazing you are to be able to move forward with courage and gratitude already. Thinking if you and your boys.

  3. Carrie

    Oh, Tanya. I am SO sorry to hear this. And I officially declare you exempt from all guilt for yelling – we all would have done that.

    Thank God for Elizabeth, yes, no accidents that you’re moving closer to her?

    love.

  4. macrina lesniak

    well done, sounds like you handled a horrible situation in the best possible way, I’m so glad everyone survived! My heart goes out to you and the boys.

  5. Alexis McConnell

    Tanya,
    I know, first hand, how heart wrenching it is to watch your child experience the unthinkable.
    You are a strong and grounded woman and this in itself will be of wonderful support to your son.
    My prayers are with all of you.

  6. Jess

    These are the times I wish we could all just drop by – check in, bring steaming cups of coffee and sit for a while. Just be there. I’m so sorry, Tanya.

  7. Paulene Angela

    Oh Tanya, absolutely out of nowhere, you did exactly the right thing by immediately calling 911.

    Hope you can get to the bottom of this a.s.a.p. might be worth seeing a nutritionist too, there’s a urine test that’s simple to check balance levels.

    I worry for our teens, all those hormones jumping around etc. it’s really a difficult time.

    Sending (( )) and courage

  8. Em

    Very scary stuff. We have not had to deal with seizure activity in our family, but I’ve surely seen plenty among my students. And it is a very difficult thing to be around. I’m glad everything seems good at the moment and will keep my fingers crossed for both of you!

  9. Barry

    Our son is six, ASD, and we are not yet at this risk age yet but a friend of ours son (now 26, ASD) had two significant seizures at the same age as young Nigel. The condition (for him) was controlled very well with medication that had near no side effects (a bit of appetite loss). Scary stuff (very) no matter how you look at it but the good thing is that for most the antiseizure medication is very effective and not permanent. At least on this issue we have some decent means of medical treatment for our kids. We wish the best for you and young Nigel.

  10. JoyMama

    Wishing you wisdom and courage for the journey ahead, in all senses of “journey”! We’ve encountered the seizures too with our daughter, including the terrifying stops-breathing-for-a-bit thing. Thank goodness for community, indeed, and the wonders of modern medicine. Joy is on a long seizure-free string right now, and you’ll find what works for Nigel too. Hugs!

  11. Nicki

    OMG, that is so scary! But don’t feel bad about yelling and assuming he was not listening… siezures take you by surprise that way! The first time I saw someone have a seizure, we were sitting down at a table at a bowling alley, and my friend Bobby seemed to jump off of his seat and hit the ground. My first reaction was to think someone was shooting at us, so I jumped off of MY seat and hit the ground too!
    I know a lot of people who have had one siezure in their entire lives. There’s a good chance that Nigel’s first seizure could be his last! I’ll pray for you guys!

  12. Niika

    I’m also sorry to hear that you, Aidan and Nigel had to have such an experience. I hope that everything will be better in the future. Can’t wait to see you soon!

  13. Lex Savko

    Tanya, you know how sorry I am that all of you had such a terrifying experience. I’m so glad he is doing better now. Hopefully this will be the last time. Keeping my fingers crossed and my thoughts filled with positivity!

  14. AmyLK

    What a scary experience! But I am thrilled that you have people who you can reach out to for advice and comfort. Keep us posted on the progress.

  15. Anonymom

    Tanya:

    I put my cyber arms around you.
    Offer my cyber should to lean on.
    I am so sorry you and Nigel have to go through this. May god give you the strength and direction you need.

  16. Holly

    Hi Tanya, I’m so sorry this happened. I too keep it in the back of my mind that one of my kids could have a seizure, not sure why I think that. Our lives with autistic kids can be so complicated and unpredictable.

  17. Jen

    Oh- I am so sorry that the two of you had to go through this. I hope that you find an explanation/answer/treatment soon.

    You aren’t on your own…many of us have dealt with them. They are always tremendously frightening.

  18. Cheryl

    Hi, Tanya

    I’m SO sorry to hear that you all had to go through this scary ordeal! Yikes! My thoughts and prayers are with you guys in hopes that this was the first and last time that it happens.

    Wherever there are teenage boys there is always banging and clanking around, so please don’t beat yourself up about the fact that your first thought and natural instinct was to think Nigel was banging around on something…I would’ve done the same thing, and I’m sure any mother of teenagers would have too! You did all of the RIGHT things…you stayed with Nigel, had Aiden call 911, got him help and to safety as soon as possible, and stayed as calm as you could under the unexpected and scary circumstances in the meantime. Once again you deserve a medal of honor in my eyes….as the boys would say, “You are NINJA! – You’re a ROCKSTAR!!!” :0)

  19. Christine

    My son has Aspergers, and had his first seizure at age 6. The ER doc told us that we were ‘overanxious parents” and that there was nothing wrong with him. We were living in So Cal at the time, and found a wonderful support group — they are in Orange County, but the listserv is amazing and the meetings are worth the drive. I hope Nigel’s seizure is a one-time thing, but if not: http://health.groups.yahoo.com/group/OCepilepsy/

  20. Tera

    No guilt, Tanya. If you hadn’t been upset and gone to check things out, you would never have been able to call the ambulance and help your son. A good mom knows when things aren’t right and checks it out…exactly what you did.

    How very scary. Kaeden was a babywhen he had his first seizure. I always have a fear in the back of my mind that it culd happen again. Thanks for reminding me that it, indeed, could so I stay on top of it.

    I’m glad you are all okay, and that you’ve got support and help from people with some experience. Goh, this autism thing sure isn’t easy. Best of luck to all of you with this new blunder. I’m thinking of you guys.

  21. Tanya Savko Post author

    Many thanks to all of you for your concern and prayers, your suggestions and empathy. Your support means so much.

  22. Dayna Golden

    I have worried about Jeffrey having seizures also, it must have been so scary for everyone involved. Hopefully the test will answer your questions. Our kids have so many challenges without having to worry about things like seizures. Keep your chin up.

  23. Woolie

    You had no way of knowing that he was having a seizure. I think every parent would have assumed that he was just banging his feet.

  24. Christine

    Tanya I just want to hold you for awhile. I have been there and I know how scary it can be. Dylan’s seizures started when he was 2, and stopped by the time he was 4. I sometimes wonder if this is where his ASD comes from. He needed medication from the hospital to get his seizures to stop. We didn’t know this because we called 911 the first time, they had told us to just drive him in if it happens again as most seizures are 5 – 8 minutes. Next seizure 5 in the morning, raining so hard the bridge was out near our house 45 minutes later we finally made it to the hospital still sezing, completly blue. This was before the days of cell phones. For years every time I seen him lying face down on the ground, or heard a noise I didn’t recognize my heart stopped until I could reach him.

    With everything I know about ASD I can’t believe I didn’t know we may have to face this again now that he is reaching his teen age years. Take a deep breath, we can do this right?

    I started having seizures about a year ago, I kinda wish I would have had your doctor, “well I didn’t see it happen so maybe it didn’t”….nope for me I lost my drivers licence…yuck. But seizures are a lot more scary for the people watching than the people having them.

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  30. Keegan Sluis

    Hello this is Keegan again from the Sluis Academy. Tanya that sounds like a very scary and stressful situation. consider yourself lucky that everything was alright. Thank god you were home and there for him. Has he had anymore since or was that just a one time occurrence?

  31. Tanya Savko Post author

    Hi Keegan,
    Thanks for your comment. Yes, unfortunately Nigel has had quite a few grand mal seizures since then. He has had two abnormal EEGs and was diagnosed with epilepsy. He’s been on different anticonvulsants, and so far his current one seems to be working as he hasn’t had a seizure in a while. We are very grateful!

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