Tag Archives: seizures

Protocol

Apparently when I wrote my last post and mentioned something about not getting any of the dreaded phone calls from Nigel’s school yet, I neglected to – you know – knock on some wood. Because the very next day, the second day of school, I had been sitting there at work for merely an hour when the phone rang, and when I saw “school” pop up on the caller ID, I really couldn’t believe it. Already? Aw, hell.

Upon closer, split-second inspection, I discovered that it was coming from Aidan’s school, and I relaxed a little. But only a little. Because when Aidan’s school calls, it’s usually because he’s sick, and I still wind up having to leave work to go pick up a child from school. He seemed fine when he left the house an hour ago! I sighed and picked up the phone, resigned to my fate.

But the call wasn’t about Aidan. It was the school district’s main nurse, who happened to be at Aidan’s school that day. And she was calling about Nigel and his seizure protocol. My heart started thudding as soon as she said it.

Some of you may recall back in June when Nigel had his first major seizure. It was horrible and scary, as they all are, but when the smoke cleared and I had done some research, I was able to identify what might have triggered it, and thus learned how he could possibly avoid future episodes. Nigel stayed with his father for several weeks over the summer, and he made sure to refrain from watching movies in the dark, especially those with flashing lights. He is also learning to employ some stress-reduction techniques, since he was under a lot of cumulative stress at the time that the seizure occurred, and that most likely made him susceptible to it. And (as I make sure to knock on my wooden desk), the great news is that he has not experienced any more seizure activity at this point (that we know of).

But because he had that seizure, the school district requires there to be a seizure protocol on file in case he has a seizure at school. And I’m glad that they require it, of course. It’s a signed document that his teachers must be aware of in the event that he has a seizure in their classroom, so that they know what to do. It’s necessary, it’s important, but it’s unwelcome. Of course, I’m glad that there is a seizure protocol in place, and I approve it, but I wish it didn’t have to exist. I wish my son hadn’t had a seizure. I wish I didn’t have to worry every day about him riding his bike to and from school and having a seizure on his bike. It’s hard enough already. Everything he deals with is hard enough. And now this.

Like it or not, this is our reality. This is the “what now?” mentioned in the heading of this website. This is the latest thorn that has found its way to my side. One more worry in a long chain of fears. And I will just have to face it, like I do everything else. The seizure protocol came home today for me to sign, and we have an appointment next week with his doctor to see if she wants to schedule any more tests. If she does, we’ll do them, of course. But part of me wishes I could just bury my head in the sand. And all of me wishes that knocking on wood would be enough to keep the electrical activity at bay forever.

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.

The Reason

Now we get to the heart of the matter – the reason the Knowledge for People team came to Nepal. We have taken some time to get over our jetlag, do some sightseeing, and acclimate a little. Now it’s time to work. And I have come to realize that, apart from raising my children, it is the most fulfilling work of my life.

AutismCare Nepal is a small, new, parent-founded center in Kathmandu. It is also entirely parent-funded. Most of the parents had to go to Delhi, India, to receive a diagnosis for their children and therapy/treatment suggestions. Imagine having to go to a different country for a diagnosis. They had absolutely no resources for autism families in Nepal. AutismCare Nepal is the first step to rectifying that.

Zahida, Tanya, Ann-Marie, Nikki, Dori

And that sort of makes the Knowledge for People team the second step. Our team is comprised of Nikki (the director), Dori (speech therapist), Ann-Marie (ABA teacher), Zahida (behaviorist), Blaine (photo/videographer), and me (parent representative). We have prepared presentations on general autism information, parenting experience, ABA therapy, PECS, social stories, and sensory integration therapy. Our idea was to have two days at the beginning of the week to give the presentations, as a way to introduce the background knowledge about the therapies and strategies. Then we would spend the rest of the week working directly with the children (twelve of them, we were told) and their parents on an individual basis. Upon our arrival, we discover that things have been rearranged. The presentations are now scheduled for the end of the week, and individual sessions will be done first. Not only that, but due to a news article about our arrival that had been published the week prior, the number of children jumped from twelve to thirty. We never thought there would be so many. But then again, this is autism. The rapid increase in Kathmandu mirrors the increase in developed countries. I immediately saw the parallel.

So, we figured out a way to fit in 28 individual sessions with the families. We wish we could work with them all individually, but this was the best we could do. The two families we couldn’t fit in (and there were even more as the week went on!) agreed to attend the presentations at the end of the week and ask questions about their individual needs then. We set up stations in different rooms of the center, which is a two-story house that the parents rent (in addition to their regular living expenses). One room is for PECS and social story instruction, another room is for ABA/DIR Floortime instruction, and the third is for sensory integration. The parents and children rotate through each of the rooms, spending close to an hour in each one. Some of them have walked a great distance to be here. Some of them have taken various buses for over an hour. Some speak a little English, some none at all. By the time all of those scheduled for that day have gone through all of the rooms, the poor kids are past their limits. It is exhausting for everyone.  As an introvert, it is difficult for me to give a condensed version of my half-hour-long sensory integration presentation to each new parent. I have to do this otherwise they will not understand the reasoning for the sensory therapy techniques that Zahida (who is studying to be an OT) and I are suggesting for their children. I have to describe, among many other things, the vestibular and proprioceptive senses 28 separate times (29 if you count the presentation at the end of the week). I wish we could have done the presentations at the beginning of the week, so that everyone would have this information prior to the individual sessions, but I have to be flexible and focus on doing it differently than I expected. And here I see another parallel – learning to be flexible when plans change is something that my own son struggles with on a regular basis. Now I have some idea of just how exhausting it is for him.

Aside from adjusting to the change in plans and the increase in children, overall our individual sessions go very well. The children range in age from three to eleven, at different areas of the spectrum. Several of them are nonverbal, and some have limited verbal ability. Some are fearful, some are not. Some are quiet and complacent, others are loud and aggressive. Some throw sensory seeds all over the room, a few lie down and nap. Some put everything in their mouths, some categorize and line things up. But all of them, well, they are simply beautiful. I see so much of my son in many of them that it throws me back to the early days of his autism diagnosis, when we didn’t have the internet for information and support, and all the books I could find were archaic or otherwise not helpful. This is where those parents are. And they are wonderful – so dedicated to their children and eager to learn. My experience of having my son’s diagnosis twelve years ago helps me to have some idea of what they’re going through now. I look into these parents’ tired but yearning eyes and want to throw my arms around them.

And of course they have questions. Tons of questions. Questions about spitting, toilet training, masturbation, safety, eye contact, head-banging, you name it. They are sponges, for lack of a better metaphor, absorbing every suggestion, every piece of information I can give. But no one has all the answers, especially not me. And near the end of one of my individual sessions, when a five-year-old girl begins having a seizure, I freeze. Her mother is sitting cross-legged on the floor with her daughter lying in her lap. She does not speak English and the translator was needed elsewhere, so I have no way to communicate. But the mother, of course, knows what to do. She calmly holds her daughter as she seizes; I watch her little body twitch violently, and she moans with each spasm. I wonder if she is in pain, or afraid, but maybe her sounds are involuntary. I don’t know. I feel useless. I have no experience with seizures, and this one seems to be lasting a minute, but feels longer. Trying not to panic, I ask if she needs anything. The mother glances at me. I know she does not understand my words, but I think she senses the concern in my voice, and there is some sort of appreciation in her eyes.  Then she turns her attention back to her daughter, who soon stops convulsing. A moment later, the mother picks up her things and, with her daughter in her arms, says Namaste and leaves.

I take a break. I blot my face, drink some water, and go in the next room to observe the end of a PECS session. I know if I go somewhere alone, my emotions will overcome me, and now is not a good time for that. It is mentally and emotionally taxing, this work we are doing, but as I mentioned above, it is the most fulfilling of my life. I know that my suggestions cannot help everyone, like the parents whose children have seizures, but I also know that my presence here is making a difference. They know that people out there care. That we would come from half way across the world to try to help, to tell them they are not alone. Yes, that is the reason.

For photos of us “in action” working with the kids and parents, click here.

Adventures in Puberty, Part 3

And now, the part that you’ve all been waiting for (I know, because I was, too) – dealing with emotional immaturity during puberty. This is the crux of the matter, I think. This is what makes us wonder what is going on with our ASD kids, why they fly off the handle, why they indicate an interest in dating even though they’re nowhere near ready for it. I went to the Autism and Puberty seminar seeking advice about these points, and I understand a lot more now than I did before.

So far I’ve been able to determine two main issues contributing to problem behaviors during puberty:

1) Learning to deal with hormones. It’s hard enough for NT kids to handle their surging hormones, and for ASD kids, it’s even more difficult. And ASD children who had severe sensory issues when they were younger are going to have a harder time. It took my son, who is now 14, years to learn how to filter out all the sounds and other sensory issues that were agonizing to him as a younger child. Similarly, it took him about a year to learn to filter or “deal with” all the new hormones surging through his body once puberty hit. He seems to have reached a (probably temporary) plateau at the moment, but prior to a few months ago, he was frequently agitated, short-tempered, and volatile.  He seems to have adjusted to the hormones, although I’m bracing myself for future “surges” as we get through the rest of puberty. Hormonal changes are also said to possibly trigger seizures in kids who had not previously had them, up to 1 in 4. (The presenter at the seminar explained that seizures in young ASD kids are caused by a different type of brain activity.)

2) Emotional immaturity. What exactly does this mean? As we know, autism is categorized as a developmental disability, a pervasive one that affects many different areas of development. As ASD kids get older, many of them do develop language and communication abilities, cognitive development improves, and sensory integration can as well. But social and emotional development usually lags behind, even in the presence of high cognitive ability. How behind? It varies, and it depends on something called emotional age. Emotional age is the level on which your child relates to others, and it is usually determined at your child’s school. For example, when Nigel was in fourth grade, his teacher explained to me that his emotional age was four. Yes, four, when he was ten years old. What do they base that on? Usually they do observational testing, but parents can figure it out themselves simply by looking at what age group of children your child seems to relate to the best. At the time, Nigel was relating to preschoolers, and he often acted like one. Over the past four years, he has progressed. He has friends that are his own age, but he does not fully relate to them and they do not relate to him. They like him, they spend time with him, but they have a hard time understanding him. However, there is an 8-to-9-year-old boy in the neighborhood Nigel plays with, and they seem to be on the same level emotionally. This makes me believe that Nigel’s current emotional age is about eight.

I think about what it would be like to be eight years old and going through bodily changes and dealing with hormones, starting to have sexual feelings and not having the maturity to handle them. My son sees his peers interested in girls, he sees his age group being portrayed a certain way in the media, and so he thinks he should be that way because he wants to fit in. Of course, all teens want to fit in. But a 14-year-old with an emotional age of 8 is going to have a much tougher time. And he isn’t ready because he hasn’t even hit adolescence yet.

In the next post: emotional age and adolescence, and what to teach older teens.

Seizures

Nigel has never had a seizure*, but I have heard and read over the years that adolescence can bring on seizures in previously seizure-free kids. And the possibility has filled me with fear.

Two years ago, one of my co-workers was running some errands on her lunch break, and she had a seizure while she was backing her car out of her space in a busy parking lot. No one was hurt and there were people around who helped her, but it got me thinking and worrying. What if Nigel had a seizure while riding his bike? Just in the past few months I have become secure enough to let him ride his bike alone around the neighborhood. He craves some independence, and so I hold my breath while he is gone for half an hour, hoping he’ll watch for cars, remember to stop at corners, not run into anyone or anything. Not have a seizure. It’s hard to completely let go like that and just trust.

When my co-worker returned to work the next day, my boss made sure that all of us were informed about what to do if a seizure occured in the office (the co-worker had not previously disclosed that she was epileptic). We learned to not restrain her, and to remove any sharp objects in the area. Afterward, we should lay her on her side to maintain an open airway and prevent inhaling any secretions. We learned that she may experience confusion and that someone should stay with her.

According to Autismuk.com, Roughly 25-30% of autistic adolescents have been reported to develop seizures. That’s too high a percentage for my comfort level. But I guess if Nigel did start having seizures we would just deal with it. We’d do what we needed to do, just like we’ve done all along with every other issue that’s come up.

And I would do what I’m doing now: solicit advice from those who’ve been through it. Are there any readers whose children developed seizures in adolescence? Do your children take any medication for it? Please contribute your experience and suggestions. I appreciate your input.

*UPDATE* Nigel had his first seizure, a grand mal, in June of 2010. He has has many since then and has been diagnosed with epilepsy.