What should I do when child acts like he needs a nap?

[aparente001]

Hi, I tutor my friend's child in math, as a volunteer, three times a week. We'll call my friend M., and her child A. A. has epilepsy and is ten years old. He has been struggling in math in school since at least first grade, and I think that the school didn't know how to help him, and made things worse by getting him confused between addition, subtraction, multiplication and subtraction (and now this year they want him to exponentiate!!). He reads well, at approximately his grade level.

I started working with him in late July. He has made slow but good progress. He used to do "counting on": 8 + 5 = 8, 9, 10, 11, 12, 13, using his fingers. But because his father would hit him when he used his fingers to do arithmetic, he was afraid to actually move his fingers. So he would lose track, and he might get 8 + 5 = 12, or 14, or who knows what. He couldn't add, for example, 8 + 2 without either guessing a fairly randomly chosen number, or counting on, with unreliable results.

(His father no longer has shared custody, thank goodness.)

A. can now add any single-digit numbers and get the right answer most of the time. I do sometimes have to remind him to look at his list of strategies and choose one, instead of "counting on". We started out with one strategy (in other words, one type of addition problem), and only added another strategy when he was solid with the ones he had.

We practice in the context of a fun game similar to chutes and ladders, but with Mickey Mouse and water slides. I flip over an index card with an addition problem on it, such as 6 + 8, and when he's figured out that it's 14, he can move his piece forward 14 on the game board.

Question 1: We've started doing skip-counting (count by 3's, count by 4's, etc.) in preparation for multiplication. He gets lost at the same point almost every time. 4, 8, 12, 16, 20, 24, 28, 32, and then he gives me a pretty randomly chosen number -- most frequently, 34. Any suggestions to help with this? Somehow I need him to develop a mental number line, and a mental even-number line, and to get the hang of choosing EVERY OTHER item on that line.

A. was tested recently by an educational psychologist and he tested extremely low on working memory. I wonder if he has had some brain damage resulting from seizures. How do M. and I figure out if that's the case, and more importantly, what do we do about it? I go along to medical appointments, and I'm on A.'s HIPAA. We live in a small town that just got its own child neurologist last year for the first time, and it takes several months to get an appointment. In the appointment, the doctor doesn't like to hear questions while he is typing his notes -- which is almost all the time. So I need to prepare especially well for these appointments.

Question 2: Can one recover any of the cognitive abilities that were lost?

A. takes Tegretol. He has not had convulsive seizures since re-starting the med in early August. Except that he has a vibration thing sometimes at night -- I don't know what to call that. The movements are not as big as in a regular convulsive seizure.

He has absence seizures. I think more at school and at home than with me, although I've seen at least one.

Most of the time his ability to participate meaningfully in our activity or game is good. Occasionally it is very good, and occasionally it is quite, quite poor.

Question 3. When it's so poor, what's going on? Is there some sort of seizure that isn't physically noticeable, that sort of jams the proper functioning of the brain? What should I do when that happens?

Sometimes when we go into our tutoring room after school, A. looks like he could fall asleep standing up. One time I folded up his sweatshirt under his head while he slept on the rug, and called his mother to pick him up because I was worried about him. That time, I wouldn't have been able to keep him awake if I had tried. She came and woke him, about an hour into the nap. The other time I did my best to push through with an abbreviated tutoring session, but I've been wondering:

Question 4. Would depriving him of a needed nap risk provoking a seizure?

Question 5. Might he have had some sort of seizure in the car on the way from school to the place we do tutoring (8 minute car ride) without showing it in any way? My impression is that after a seizure (more substantial than a simple absence seizure, that is), the person needs to sleep. That's was how it was when he had the convulsive seizure in early August.

Question 6. Am I wasting my time and his, trying to do our normal tutoring activities, even a shortened session, when he feels incredibly tired?

Question 7. A. gets a lot of headaches. For example, perfume can trigger a headache. I read that perceiving an annoying smell can be an aura, signalling that a seizure is coming. Can an actual smell, that really is in the room, trigger a seizure? Can a headache trigger a seizure?

Question 8. Sometimes A. insists he said, or didn't, say something, or insists I said a particular thing. Even within the course of 60 seconds, he sometimes flips and then flops on his opinion about something. (Which, of course, he insists is NOT an opinion, but FACT.) If I disagree with him, he gets very frustrated and can't let it go. Parents: what is a graceful way out of this? Sometimes I apologize and say something like, "I guess I heard you wrong before" or "I'm sorry, I guess I misunderstood." But it's hard to do that over and over again, and often he doesn't even accept that! He gets frustrated, because HIS perception is that I'm saying nonsense!

Question 9. Should we ask the neurologist if there's another medication, either to switch, or to add? Any particular medications to be asking about? Might the cognitive dulling be a side effect of the Tegretol? Does anyone have any suggestions of medications to consider? I would not take your suggestion to an appointment and say, "We want this." I would say something more like, "We wanted to ask you about this medication, whether it might be helpful for A." For example, might a stimulant medication help, or Tenex (an alternative treatment for ADD)? A. has been diagnosed with ADD, with the dreamy type of distractibility. He's not hyperactive.

PLEASE POST ALL RESPONSES PUBLICLY, NOT AS PRIVATE MESSAGES. THANK YOU!

 

[Rae1889]

Question 1: Sounds like there is soemthing else going on aside from just the seizures. Possibly either autism, dyscalcula, or the inability to recall recent spoken words etc. It could very well be that the math itself triggers simple partial seizures that confuses him further. (Math triggered seizures are becoming more and more documented) I would say give him longer breaks in between math vs reading questions and see if you can video the response the more you ask and if it makes the symptom worse.

Question 2: Its possible, but it could also be a side effect of the medication he takes. Lately while Im on my medication, its caused quite a brain fog tahts very hard to sift through what Ive already said and what I need to say next. Could be the same for him too. He might actually require those visual aids to help him right now.

Question 3: Yes, there are "invisible" seizures that only he can feel and that you may not be able to detect, so that is a possibility on what is going on as well.

Question 4: Being tired can be a side effect of both a medication, as well as having a seizure. Generally if I have had too many seizures in a day, I am very lethargic, and then very hard to wake once ive gone to sleep. Post-ictal sleep is much different than regular sleep. Its used as sort of a reboot system. If he needs to sleep and isnt caring where he is or what he is doing at the time, let him lay down. There are many factors involved that could trigger a seizure, and sleep deprevation is one of the bigger ones, but you wont know thats the case for him until you deny the nap.

Question 5: Its possible he is having seizures in the car. A trigger for me used to be watching the light pass through trees during car rides as it created a sort of stroby pattern effect. It really sounds like he needs an up to date EEG done, or if you use an app on your phone to record any moments you think might be a seizure or record him during moments you think might trigger them.

Question 6: No, I dont think you are wasting his or your time. Its important that children with Epilepsy try to keep up with the social and educational systems aroudn them, or you risk them feeling out of place and alone later on in life because tehy didnt get to experience the same things their peers did. Just maybe try other approaches.

Question 7: Yes to both questions. The actual smell if similar to their aura can trigger a seizure. my smell is burning rubber or used erasers. This effect is called kindling and if the brain associates the smell with the seizures, it may trigger one purely out of habit. ALso, a headache can be an aura to a seizure as well as a seizure itself (migraines are now classified as a type of seizure)

Question 8: This one is frustrating because seizures and ictal states can cause not only audio and visual hallucinations, but also deja vu and memory issues. I would suggest that instead of calling him out on the things he has stumbled over, to try to roll with his new point of view as if the first one didnt happen.

Question 9: Yes, definitely bring it up to the neuro. There are many medications you can research, but its really up to the neuro to know what is going on with his seizures and mental state right now in order to decide if an increase is needed, or a change is needed. each medication works best with a type of seizure. ADD is often a misdiagnosis in children with seizures due to the pre and post ictal states looking like dreamy distraction and with absence seizures looking as if they arent paying attention.


I hope that helped answer your questions.

TLR = take him to the neurologist.

 

[seagull]

Tegratol made me feel awful maybe it is with him.it do sound like he needs see Doctor..Is it possible he just hates math and wants sleep when do maths believe me he not on his own there.
If he do have sz in car then he dose not lot you can do just don't panic if go on for more 10mins then get help if you feel unsure.

 

[aparente001]

Thanks for your thoughtful reply, Rae.

1. What does "video the response" mean? What does the part about "the more you ask" mean?

Strangely, breaks don't help. He seems to need a really long time to get in gear at the beginning of a session. As we go along, his concentration improves. Maybe because the games we play are fun.

3. I would like to learn more about invisible seizures. What does it feel like to the person having it? Is there a technical name for that, so I can read up about that? How long does it last? What are the effects right after it happens? How long does that special state last?

A. had an EEG last Wednesday and a blood test on Saturday. We have a follow-up appointment for December. I doubt I'd be able to move it up sooner -- this doctor is so incredibly overbooked, because he's the only one where we live. However, I can communicate with the doctor indirectly, through the nurse, in the meantime -- but it helps to have specific questions prepared before I call.

4. Re the sleepiness, we are meeting with the school on Friday to make his first IEP. Should we put in there that if he is sleepy, they should encourage him to have a short nap, as a way of avoiding triggering a seizure?

5. How can I prevent him from having a seizure in the car, of the type Rae described, triggered by watching the stroby pattern of light out the window? My first instinct would be to have him sit in the front seat, so he can be more engaged in conversation with me, and be looking at people, cars, buildings, etc., instead of the stroby pattern. His mother is nervous about him riding in the front seat, which seems like excessive anxiety to me, because he's ten years old now. I have an old booster seat in the garage. Maybe if I offer that, she'll accept him riding in the front seat.

What does this mean: "record him during moments you think might trigger them"? Do you mean make a video? What am I trying to catch on the video?

6. Sorry I wasn't clear! I don't mean, am I wasting my time working with him in general. I mean, when he's so tired, we make little progress, and I feel like I'm painting the outside of my house in a driving rain. When he's that tired, should I just skip the math for that day? Should I offer him a nap?

How do we figure out if a headache is a seizure? Or if it's a prelude to a seizure? In this latter case, is there a way to prevent it actually becoming a seizure? Or is a seizure like a sneeze -- it needs to happen sooner or later?

8. Here's an example (slightly artificial, but hopefully it will give you the flavor).
A.: I want to start with the Pyramids game.
(I start to set up the Pyramids game.)
A.: What are you doing? I said I want to play Aqualand first.
Me: Oh, I'm sorry, okay.
(I start to put the Pyramids cards away.)
A. No, no, we haven't played Pyramids yet. I told you I want to start with Pyramids.

Note, sometimes he comes back full circle like this, but sometimes he only flip-flops once. But when these things happen, he gets annoyed with me. Also note, sometimes these "misunderstandings" are about math, sometimes they're about something else entirely -- e.g. afternoon snack.

The way I wrote this up, it looks as though he were just playing with me. But I swear, when this happens, he's serious.

What does "ictal state" mean? Sorry for my ignorance.

We have a letter from the neurologist saying "video EEG showed he was prone to both focal (beingh rolandic) and generalized seizures.