Friday, July 10, 2009

Nicky and His First Grand Mal Seizure

Nicky had his first Grand Mal Seizure. He is okay, we are all okay.

At 6:47AM, Monday morning I reached over to wake Nicky and get him ready for summer school. When I uncovered him his body was moving, twitching, like he was having an active dream. I smiled thinking, wow this dream must really be something. I turned him over expecting to see a smiling face. Instead I heard a choking gurgling sound and saw bubbles coming out of his mouth, and his eyes rolled back into his head. He could not hear me and I thought he could not breathe. I yelled for Evyn to call 911. I kept saying “Nicky Nicky”. I picked Nicky up laid him on the floor and tried to give him mouth to mouth, and chest compressions. I wondered if he needed the Heimlich, but thought how could he, he didn’t eat anything. When I realized he was biting down, I put my finger in his mouth to keep him from hurting himself. Then still not knowing what to do, or how to help I began to realize he was having a seizure. I rolled him on his side, held him tight and just talked to him and the 911 operator. Suddenly Nicky stopped shaking and his body was still, totally limp. We just laid there and I wondered if he was dying. Suddenly he bolted up, clearly disoriented and tried to run. I was struggling to hold him so he would not hurt himself. Just then the paramedics arrived. They got Nicky sitting up; they immediately gave him oxygen and began monitoring vital signs. Nicky stopped trying to escape, sat up and drooled. I talked to him. He was still disoriented and the few words he said were slurred.
The EMT’s asked quick questions about his medical history and asked me to get all of his medication and put them in a bag, get him a change of cloths and get ready to leave. Within minutes, Nicky, his cloths, medications and I were in route to the hospital.

As the day ended I realized how much I learned, that I didn’t have a clue about. Much of which I should have known, but I just didn’t know. In reading this, please know that it just reflects our experience. I am sure that there is much more, and many different experiences. All I know for sure is that this is what happened to us; this is information I was told. Check it out, talk to your doctors, take what you can and please learn all you can so you wont’ be off guard like I was.

1. A seizure does not look like what I have seen on TV, it looks like what I described and it may look many different ways.
2. Almost all seizures stop within 2 minutes
3. Seizures have stages (in our case there were three stages: active seizing, to a limp body, to bolting up disoriented)
4. It was so reassuring to have EMT’s rush into the house that I recognized from my visits to the local fire department.
5. The person having the seizure does not remember it.
6. The person having the seizure can’t swallow their tongue, but they can bite themselves.
7. Don’t put your finger in their mouth to stop them from biting. Grab anything from the corner of a wash cloth or your pajama’s. But fingers are not good.
8. Many seizure patients recover from the seizure but get hurt by hitting their heads. Number one is be sure their head can’t hit anything
9. Put them on their side if possible, so if they vomit they won’t choke on it
10. Call 911
11. Watch the location of the eyes (this information can be used to determine the origin of the seizure). Nicky’s eye’s rolled to the left which meant his was centered in the speech part of his brain.
12. When our kids have a fever or infection they become more susceptible to seizures, including seizures of this magnitude even if they have only had absence seizures in the past. We should be on the look out, just in case.
13. Seizures burn up a lot of fuel, leaving the person exhausted afterward.
14. Nicky did not have a fever at the time of his seizure.
15. All of our ASD kids should have a 24 hour EEG to rule out seizure disorder. Shorter EEG’s just might not catch it.
16. Seizures do not have an automatic progression; they do not increase in phases. I thought since Nicky had only had the absent seizures in the past, if he were to seize it would be a little one. Wrong Again.
17. The seizure medication some kids take for absent seizures does NOT insure that our kids won’t have a bigger seizure, especially if they are ill.
18. Nicky does not wear an ID bracelet. I now know how critical it is for emergency medical workers to have a list of ALL the medications he is taking. I will keep that list along with a copy of his medical card in his backpack.
19. Nicky’s team never anticipated that they might have to deal with a seizure. I have now taken the time to get them all up to date.
20. Pay attention to how long the person who had the seizure is disoriented afterwards. It could be a useful diagnostic tool.
21. Kids can be “off” for up to 24 hours after the seizure.
22. I have to keep doing everything I can to keeping Nicky’s overall immune system as healthy as possible. I know that all the work we did expanding his diet, that finally paid off this year, is a critical part of his overall health and part of why he heals so quickly.
23. Always get out of the way for emergency vehicles, on the road, you never know who might be inside .

Three things I am incredibly grateful right now!
1. NICKY is okay.
2. I got to know the EMT’s in our area. There was something comforting about seeing familiar faces in a crisis.
3. All the time spent making sure that Nicky’s body is healthy. It wasn’t easy getting him off French fries and chicken but it has paid off. Despite all of his “Stuff” he is a strong healthy boy and that helps him heal.
4. There will never be another “first” seizure!
5. The hospitals TV in ER over Nicky’s bed. Without it, we would have had to restrain him.

Miscellaneous Thoughts

• Ambulance rides are wasted on sick people. What fun that would have been for any little guy to zoom through traffic, with flashing lights and sirens. Oh, well.

• This was not helpful in my quest to get him in his own room.

• I wonder when I will stop waking him up every time his body twitches.

• We can handle anything

Yikes…another day in the LIFE 


  1. Thank you so much for sharing this and providing such excellent advice!!! I am so very sorry this happened to Nicky!

    Your post brought on that HUGE "fear" feeling again that I had back in January due to Travolta's son. I haven't had a full nights sleep since then...

    Although my one twin son, the one that has Autism (almost 6 years old) has not had a seizure of any type that I know of (yet), I am still so worried that one day, out of the blue without notice, he will.

    My husband, family, his Pediatrician, and even his teacher say that since he's never had a seizure he probably never will and to stop worrying.

    But those very same people that NEVER listened to what I had to say just before he turned 3 years old, that something was going terribly wrong and I had no clue what it was! They said I was over reacting.. that he was fine...

    It wasn't until a year later, right after the twins turned 4 years old, that the pediatrician admitted and said these exact words I'll never forget: "Cameron has characteristics of Autism...Oh! but not FULL blown autism." (as if that was to console us!)

    At the time prior to finding out what was wrong, I could not understand why he regressed and quit going potty on the toilet, or why he quit talking to us and giving us less eye contact. Or why he started up the "toe walking" This toe walking started up LONG after he learned to stand, and walk flat footed normally. That toe walking has now become how he walks and stands 98% of the time which has caused accidents due to how he toe walks.
    Even in our carpeted home he still managed to stumble and fall on a rounded wooden piece of furniture and almost lost his front tooth when he was 3.5 years old.

    Can you imagine how he walks on black top or cement, or up and down cement stairs? And even though he is a toe walker, he is also a "runner" and quite fast at it too but oblivious to the dangers ahead.

    He always to be held by the wrist lest he fall and hit his head.. And if that were to happen, I worry that this could also bring on the seizures that I fear of, and what Nicky went through.

    So sorry I've rambled on.. reading your post struck a "fear" chord with me (again) and I'll be prepared as you suggest. Hopefully I will never have to use it.

    Best wishes to you and your family.

  2. This must be hard. I'm so sorry...

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