11 replies to this topic

[Teacher]

Hi, I'm new to this site. I'm a special ed teacher writing an IEP for a 7 year old who is being evaluated for N. If he doesn't have it, he has symptoms so similar that his needs will probably be the same. I hope you can help with ideas and strategies. The background:
The student is in a regular class and has normal intelligence. His general ed. teacher is very accommodating, but concerned. He falls asleep 2-3 times daily for about 15 min. Before that he has facial drooping, mouth movements and muscle weakness that signal he is about to go out and it happens pretty fast. Maybe 30 seconds to a minute. Attempts to wake him aren't usually successful and he is so groggy that he doesn't wake up enough to learn. It is disruptive to everyone else when we try to wake him. So we usually let him sleep right in his seat with his head on the table and he wakes up on his own. After the nap, it takes him a few min. to regain his muscle control and alertness. Then we try to get him caught up. The other kids don't seem to notice any more and only some adults in the building are bothered by this plan. We have resisted suggestions to have him stand up when he gets sleepy or sit on a balance ball to do his work because I am concerned that it isn't safe with his cataplexy. But I could be wrong.
My questions:
1. Are there reasons not to let him sleep with his head on his table? He rarely moves so I don't think he will fall and it seems the least disruptive choice. His parents don't object.
2. What IEP accommodations have you found helpful? We have been modifying his work, mostly picking and choosing the assignments that he needs the most. He has some delays in reading and math is a little tricky because he fall asleep during math most days.
3. What self-help strategies can I help him learn? Are there ways for him to stay awake when it is a really bad or unsafe time to fall asleep?
4. How have you planned for or handled emergencies- like when he is dead asleep during a fire drill (or real emergency) and we can't wake him. That happened recently and the regular education teacher carried him but he became alarmed and tried to fight her in his sleep. We need a better plan.
5. We have noticed these other behaviors and wonder if they are related to narcolepsy: distractedness, laughing at odd times, appearing 'high' once in a while, having difficulty letting go of an idea until he feels it is resolved, and difficulty following simple instructions.
6. He has taken ADHD meds but they have switched him to risperidone. Have you use that? With what effects?
7. What other ideas do you have that we might use to help him?
I know this is long, but I appreciate any help you can give me to help this great kid. Thanks!

[Big Dog]

Hey Teacher, first off I think it's great that you have taken the time and measures to get to the underlying problem. Typically narcolepsy is diagnosed with a MSLT (muti sleep latency test?) I always seem to get that wrong, but in a nutshell the subject is monitered overnight then the following day will take five scheduled naps. At these intervals they will record how long it takes for the subject to fall asleep and then diary the timing of his stages. I would first want to know more about what his sleeping is like at home because some of his symptoms sound like they could be caused by deprivation. Either way, standing or sitting on a ball sounds like a bad idea if you're looking to mitigate symptoms and likely will cause them to compound once he can relax. This one is tough because each one of his symptoms could be narcolepsy, but they are by no means exclusive. I would lobby for the kid to have an EEG for seizure activity and a polysomnography (sleep test) and go from there. As far as medications goes, I don't like speculating on what to give someone so young but if you look around the board you'll find plenty of information. Good luck to you and your student, it's great to see you taking such an interest in his well being.

Big Dog

[narcshark]

Teacher,

It is great that this child has a teacher as caring as you. I wish I had been so lucky! I agree with the previous poster that it is essential to make sure this child has a PSG and MSLT sleep study in order to verify that it's narcolepsy. Ruling out a seizure disorder and obstructive sleep apnea would also be essential. However, assuming it's narcolepsy, I would suggest that you try and chart out when he is having these sleep attacks. Do they happen around the same times each day (you mentioned around math time, when is that?). Once you have tracked his sleep times (and the times of the other symptoms you've noted) then make a chart to determine the most common times of symptoms. Then, schedule him to take a nap (perhaps in the nurses office?) about 30-60 minutes prior to the times of the worst symptoms. The nurse can wake him up and send him back to class after 20-30 minutes of sleep. If you follow this plan of pre-emptive napping, you may find that you can avoid having him sleep uncontrollably at his desk. Scheduled naps are a common intervention for people with narcolepsy.

As to his medications, of course that is up to his doctor. Risperdal is a medication that is often used in people with mood disorders and/or psychotic disorders. It also has a strong sedating side effect, so it might be used to help someone fall asleep at night. You might want to ask if he is taking it during the day, because if he is that could be significantly contributing to his sleep attacks. Risperdal is not a commonly used medication to treat sleep in narcoleptics. The reason is that it has not been shown to increase deep sleep (the part of sleep that is restorative, that many people with narcolepsy lack). A more commonly used medication for deep sleep in people with narcolepsy is called xyrem. Also, many people with narcolepsy use stimulants (i.e. ADHD medications) to stay awake during the day.

Clearly, this student's doctor should have a strong role in IEP recommendations for this child...the above are just some ideas...and thanks for asking.

[kiragrace]

Teacher,

I don't have any suggestions at this moment, but had to write and let you know that you are an angel. Every child should have a teacher as thoughtful and proactive as you are.

Thank you

[Linna]

Teacher,

I don't have any suggestions at this moment, but had to write and let you know that you are an angel. Every child should have a teacher as thoughtful and proactive as you are.

Thank you

[Linna]

What a considerate observation. It is obvious something is going on. It could just be the side effects of the medication. However, that might just be a contributing factor. He defineatly needs to be sent for an evaluation. I would try to allow him to nap at the clinic if possible. Sometimes it only requires 15 minuets to feel refreshed.
Thank you for caring about the little guy. Defentialy follow up and recommend him for an evaluation. It may be helpful to talk to the Occupational Therapist. Perhaps the OT can take him out of the class and help him along with other issues and getting caught up.
And keep us updated.

[Saraiah]

Teacher,

I second all of the above, and am tremendously moved to see a professional who cares so much about his/her student.

If this child does indeed have narcolepsy, an integral part of his IEP should be the opportunity to take both scheduled and unscheduled naps during the school day *before* he's so sleepy that he's sacked out at his desk. In addition to appropriate medications, periodic naps can be the most effective strategy that children and adults with narcolepsy can use to regain alert awakeness. The child should be provided with a comfortable cot in a quiet, undisturbed, private, and safe place.

Many kids with narcolepsy (or any other difficult health condition) are extremely concerned about appearing different from their peers. Being told in front of a class of other kids that it's time for a nap could be socially intolerable for kid. I recently heard of one elegant solution which allowed a teacher to communicate to a child with narcolepsy that it was time for him/her to go to a designated spot to take a nap -- without having to broadcast to the other students that that was what was happening. When that teacher notices that the child is sleepy - and before the child is so sleepy that he/she falls asleep altogether - the teacher hands the child a folder of a certain color. As far as the other students know, the teacher is asking the child to deliver the folder to the school office. Only the teacher and the child with narcolepsy know that this means that it is a time that the child should go take a nap.

I would strongly encourage both you and the child's parents to contact Mali Einen at the Center for Narcolepsy at Stanford University. Narcolepsy is an uncommon disease, and is rarely diagnosed in young children. And to make things even more difficult, it's my understanding that the standard diagnostic tests used to diagnose narcolepsy in adults are much more difficult to use and to interpret in children. As a result, no matter how dedicated the physicians involved, it can be extraordinarily difficult to find specialists with experience in either diagnosing or appropriately treating narcolepsy in little kids. Mali Einen and Dr. Emmanuel Mignot at Stanford have great expertise in these areas. I have heard from a number of parents of small children with narcolepsy that they are kind and extraordinarily devoted to helping the kids get the treatment that they need, and the IEPs that they need as well. You'll find their contact info and lots of other information on their website at http://med.stanford....ry/narcolepsy/.

Finally, though I do know some adults with narcolepsy with severe insomnia difficulties who do get treated with medications like risperidone (Risperdal), I'm always concerned when I hear about it being used in a child who may have narcolepsy. As Narcshark mentioned above, risperidone is a medication with strong sedating effects, and is used most frequently to help folks with schizophrenia. Many people with narcolepsy experience hypnagogic/hypnopompic hallucinations, which are frequently misdiagnosed as psychotic hallucinations associated with schizophrenia. The two types of hallucinations have different origins and are also different in content, and a very knowledgeable clinician will be able to make use of a fantastic study comparing descriptions of hallucinations from people with schizophrenia and people with narcolepsy in differentiating what's really going on (http://www.ncbi.nlm....pubmed/19269535).

There are a few people out there unfortunate enough to have both schizophrenia and narcolepsy. But if a person who only has narcolepsy is prescribed risperidone for hallucinations, it's probably not going to help much with the hallucinations (unless the medication is helping a PWN with severe insomnia get more sleep), and it *is* likely to make an already incredibly sleepy PWN even *more* sleepy. If this child does indeed have narcolepsy, I'd wonder whether he's been more sleepy and more difficult to awaken since starting the risperidone? I know you're not his doctor, but that question might be one to mention to Mali at Stanford. They're the folks who could be helpful in sussing this all out if they were to have contact with the child's parents and physicians.

*Thank you* on behalf of that little student of yours, and on behalf of all the little kids out there with narcolepsy. There are so many little ones with this disease who are desperately in need of educators as sensitive, dedicated, and curious as are you.

Saraiah

[Teacher]

Thank you all for your kind and thoughtful replies. Medically, the student has had many, many tests over the last year including scans and EEGs. His symptoms started before he was on any meds, so while he may have side effects to the various ones, they aren't the cause. He recently underwent a study that sounds like the one Big Dog and some others described. Sleep apnea and seizures have been ruled out. They are still awaiting results on the narcolepsy diagnosis. His parents are working very hard to provide him with the best medical care they can. They are awesome. I'll share your links with them but I suspect they have already found them since they do a lot of internet research. I should have been a bit more specific when I said his needs would be the same. I actually meant his educational needs to function in school with a sleep disorder, rather than his medical needs, but I'm glad to be more knowledgeable today than yesterday. I was focused on my role as his special ed. teacher. We have talked about having him nap in the clinic, but it is small, very noisy, and full of contaigous kids- our building has about 700 children ages 2-8. I wouldn't want my child to nap there every day. Well, I'm going to keep all your ideas in mind and keep working on a plan. Thanks again for taking the time to respond. It is always helpful to hear from those who have been there!

[sleepzone]

Hi, I'm new to this site. I'm a special ed teacher writing an IEP for a 7 year old who is being evaluated for N. If he doesn't have it, he has symptoms so similar that his needs will probably be the same. I hope you can help with ideas and strategies. The background:
The student is in a regular class and has normal intelligence. His general ed. teacher is very accommodating, but concerned. He falls asleep 2-3 times daily for about 15 min. Before that he has facial drooping, mouth movements and muscle weakness that signal he is about to go out and it happens pretty fast. Maybe 30 seconds to a minute. Attempts to wake him aren't usually successful and he is so groggy that he doesn't wake up enough to learn. It is disruptive to everyone else when we try to wake him. So we usually let him sleep right in his seat with his head on the table and he wakes up on his own. After the nap, it takes him a few min. to regain his muscle control and alertness. Then we try to get him caught up. The other kids don't seem to notice any more and only some adults in the building are bothered by this plan. We have resisted suggestions to have him stand up when he gets sleepy or sit on a balance ball to do his work because I am concerned that it isn't safe with his cataplexy. But I could be wrong.
My questions:
1. Are there reasons not to let him sleep with his head on his table? He rarely moves so I don't think he will fall and it seems the least disruptive choice. His parents don't object.
2. What IEP accommodations have you found helpful? We have been modifying his work, mostly picking and choosing the assignments that he needs the most. He has some delays in reading and math is a little tricky because he fall asleep during math most days.
3. What self-help strategies can I help him learn? Are there ways for him to stay awake when it is a really bad or unsafe time to fall asleep?
4. How have you planned for or handled emergencies- like when he is dead asleep during a fire drill (or real emergency) and we can't wake him. That happened recently and the regular education teacher carried him but he became alarmed and tried to fight her in his sleep. We need a better plan.
5. We have noticed these other behaviors and wonder if they are related to narcolepsy: distractedness, laughing at odd times, appearing 'high' once in a while, having difficulty letting go of an idea until he feels it is resolved, and difficulty following simple instructions.
6. He has taken ADHD meds but they have switched him to risperidone. Have you use that? With what effects?
7. What other ideas do you have that we might use to help him?
I know this is long, but I appreciate any help you can give me to help this great kid. Thanks!

Hello!
1. Do not try to keep him awake. He needs those naps to function. Putting him on a ball or other techniques to keep him awake could cause an injury (and a lawsuit from his parents,) especially because he has an IEP. Strategies - these are easy - scheduled naps. That is what the ADA says is a reasonable accommodation for Ns at work. If he is too young to "understand" a scheduled nap, he will have to take one when he needs to.
2. Help him realize when his sleep attacks are coming on so he can prepare, and avoid an injury. Ideally, a place for him to go in the "back" of the room to nap would be best. Can he bring a sleeping bag and learn to go their when he feels the sleep attack coming on? Or have a small travel pillow handy and have him take it from his desk to lay his head on when he feels it coming on. Why not change Math time? If he needs help the most during Math, and this is when his sleep attacks come on, reschedule math time time for the class. Isn't this easier than reteaching him?
3. It is highly recommended that he see a neurologist, specializing in sleep disorders. I pray you can convince his parents the danger of injury if he does not get help. There are medications to help him. Also, by what you describe he will soon realize a learning delay, which will put him behind his peers and cause emotional issues as well.
4. Plan indeed! Have two people "on call" who can carry this child. Sometimes it is impossible to wake up, you need a plan for someone to carry this child out of the building in case of an emergency.
5. Imagine day after day you get 3 hrs. of sleep each night. Now think how this would affect your moods, learning ability, memory, disposition.....He is sleep deprived.
6. I have no experience with risperidone.
7. The most important is to get him to a good neurologist, which I pray you can convince his parents to do. It may take a while to get the right medication and dose. But he can be helped. When helped, he will be a much happier child! This will make life much easier for his parents and teachers.
Also, there are other topics on line for children with N. to look at for additional ideas.
I hope this helps and good luck. Please send an update! I will be thinking of that little guy and thanks for caring about him and writing here.

[sleepzone]

Thank you all for your kind and thoughtful replies. Medically, the student has had many, many tests over the last year including scans and EEGs. His symptoms started before he was on any meds, so while he may have side effects to the various ones, they aren't the cause. He recently underwent a study that sounds like the one Big Dog and some others described. Sleep apnea and seizures have been ruled out. They are still awaiting results on the narcolepsy diagnosis. His parents are working very hard to provide him with the best medical care they can. They are awesome. I'll share your links with them but I suspect they have already found them since they do a lot of internet research. I should have been a bit more specific when I said his needs would be the same. I actually meant his educational needs to function in school with a sleep disorder, rather than his medical needs, but I'm glad to be more knowledgeable today than yesterday. I was focused on my role as his special ed. teacher. We have talked about having him nap in the clinic, but it is small, very noisy, and full of contaigous kids- our building has about 700 children ages 2-8. I wouldn't want my child to nap there every day. Well, I'm going to keep all your ideas in mind and keep working on a plan. Thanks again for taking the time to respond. It is always helpful to hear from those who have been there!

[sleepzone]

Naps at your school clinic - he may not be able to walk that far before he goes down. A little area in the rear of your classroom is fine and a lot closer/safer.

[sleepzone]

Just one more thing - you describe observable "indicators" that he is ready to fall asleep. This is what I mean to help HIM identify those for himself. Clearly some Ns do not have "indicators". I just wanted to make that point. So, even if he is able to prepare himself for most sleep attacks, there may be times that it comes on too sudden, and he is unable to prepare. Again, thanks for caring.