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Any Parents Of High Schoolers?


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#21 merrymom1013

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Posted 06 April 2011 - 02:55 PM

Here's a good resource: If you go on the New Jersey Chronic Fatigue Association website at www.njcfsa.org and click on the tab for Youth Corner there are many articles about 504s, IEP and school accommodations. While the accommodations are for chronic fatigue, the educational issues are the same.

#22 The Mom

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Posted 10 April 2011 - 05:51 AM

I had a long discussion at my sons last appointment with his sleep Dr about the circadian sleep rhythm changes that teens go through and how Narcolepsy plays into it. Essentially we were told that due to the nature of narcolepsy we have to be much stricter with his sleep routine and not allow him to do the rhythm change that his body would like to do. He comes from a long line of night owls so I get the issue but I cannot allow him to give into it at least for now. I myself am more of a night person. I did the night shift for years (an RN) but last year went to days - I get up at 5:15 on days I work and 5:45 on days I don't - to get my son his meds. Its killing me, but thats the way it is. We also use a lightbox in the mornings to try and keep his body on a day schedule. The morning they have "early morning collaboration" at the high school (he doesn't have to be there til 8:20 or so) are heven!!

You mentioned your son is using a light box. My son's doctor recommended a full spectrum light but he needs to get up and read (or at least have his eyes open) near it for 30 minutes in the morning. I haven't purchased one yet because I can already feel my stress trying to get him up 30 minutes early to have light box time. I was thinking maybe trying it over the summer when he doesn't have to race out the door. What kind are you using and how are you using. Any success with it?

#23 interclub

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Posted 12 April 2011 - 01:54 PM

Hi All,

I have a daughter that has recieved a clinical diagnosis of nacrolepsy within the past week. She has been home schooled for the last two years(7+8 grades) for academic reasons. She is a strong student and good althete. She has been accepted at a boarding school (she would be a day student) and a traditional high school. She currently has a sister attending the boarding school. Her sister is in school for 6 days each week form 7:45-6:30 approx. Durning that time she has several times during the day that down time is available. My daughter usually uses that time for study. She then returns home at the end of the day and does homework until 11. This school situation would allow my daughter with nacrolepsy to grab a nap duing the day. However, I am not sure how that would work if she was taking meds to stay awake. The second option for her would be a traditional school day. It is a much more compressed schedule. Can anyone shed some light on the different school situations possible for my daughter? We have to make a decision soon. We hope to have met the sleep doc by that time, but not sure.

Thanks

#24 magpie

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Posted 12 April 2011 - 03:46 PM

You mentioned your son is using a light box. My son's doctor recommended a full spectrum light but he needs to get up and read (or at least have his eyes open) near it for 30 minutes in the morning. I haven't purchased one yet because I can already feel my stress trying to get him up 30 minutes early to have light box time. I was thinking maybe trying it over the summer when he doesn't have to race out the door. What kind are you using and how are you using. Any success with it?


I have a lightbox that I use, and its very bright. I bet if you just turned it on 30 minutes before he was scheduled to get up and set an alarm for that time, and his usual "wake-up" time he would get some benefit from it If he can't get 30 minutes, or even 20 or 10 minutes. My doctor recommended I get 20 minutes 1st thing in the morning, an even though I can't always get that in I am able to some days. Almost always on the weekends, or days when I don't have to work. At the very least it might help him to get out of bed by the time he was supposed to. Also, call your insurance company, they will sometimes reimburse for the cost if you have prior authorization, and depending on your plan.

Good luck

#25 merrymom1013

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Posted 12 April 2011 - 06:33 PM

Everyone is different, but the boarding school schedule sounds pretty demanding. It may not be reasonable to start a teen off on enough medication to give her optimal academic functioning in from early AM to 11 pm. My daughter's symptoms required more down time & accommodations. Just handling the traditional school day & work & a bit of a social life was an accomplishment. Finding the "right" medications & dose can take awhile, as can learning to live with this. Keep in mind, I no nothing about how severe your daughter's symptoms are. Trust your gut & talk to her doctor.

#26 tdmom

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Posted 12 April 2011 - 07:38 PM

You mentioned your son is using a light box. My son's doctor recommended a full spectrum light but he needs to get up and read (or at least have his eyes open) near it for 30 minutes in the morning. I haven't purchased one yet because I can already feel my stress trying to get him up 30 minutes early to have light box time. I was thinking maybe trying it over the summer when he doesn't have to race out the door. What kind are you using and how are you using. Any success with it?


I have a full spectrum light 10,000 lux I think it is. We couldn't do the 20 minutes originally. Now I put it on in the bathroom. I know its not totally hitting his eyes but its the best so far. They do have a visor but I doubt he would comply with that. I also thought of putting it on in the bedroom when he is waking up but that would defeat the purpose of having him to sleep til 6AMif I was setting it to go on earlier. Plus he would probably just hide under his covers, lol.

#27 tdmom

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Posted 12 April 2011 - 07:44 PM

Hi All,

I have a daughter that has recieved a clinical diagnosis of nacrolepsy within the past week. She has been home schooled for the last two years(7+8 grades) for academic reasons. She is a strong student and good althete. She has been accepted at a boarding school (she would be a day student) and a traditional high school. She currently has a sister attending the boarding school. Her sister is in school for 6 days each week form 7:45-6:30 approx. Durning that time she has several times during the day that down time is available. My daughter usually uses that time for study. She then returns home at the end of the day and does homework until 11. This school situation would allow my daughter with nacrolepsy to grab a nap duing the day. However, I am not sure how that would work if she was taking meds to stay awake. The second option for her would be a traditional school day. It is a much more compressed schedule. Can anyone shed some light on the different school situations possible for my daughter? We have to make a decision soon. We hope to have met the sleep doc by that time, but not sure.

Thanks


Trust me even with meds to stay awake she will be able to nap.. In fact my son who is on Provigil 200 mg 2x day still naps. The hope for the 11AM dose of Provigil is that with it in the background it will make it easier for him to wake up.

The boarding school sounds like a lot. Assuming its like many she would be required to do a sport which is good for their metabolism which slows down with Narcolepsy. How much down time will she have, will she be able to get some homework in? How willing are they to help with her schedule? How willing is the traditional school to help/work with you?

#28 interclub

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Posted 13 April 2011 - 07:26 AM

Everyone is different, but the boarding school schedule sounds pretty demanding. It may not be reasonable to start a teen off on enough medication to give her optimal academic functioning in from early AM to 11 pm. My daughter's symptoms required more down time & accommodations. Just handling the traditional school day & work & a bit of a social life was an accomplishment. Finding the "right" medications & dose can take awhile, as can learning to live with this. Keep in mind, I no nothing about how severe your daughter's symptoms are. Trust your gut & talk to her doctor.



As I indicated my daughter has been home for two years. I know she needs more down time than what is considered normal. However, she has been able to nap whenever necesssary while home. I don't know how built in nap times at a boarding school will work and I am not sure she could make it throgh a traditional school day of 7:30-2:15. It seems to me with the assistance of meds in the morning she might have a chance of making it through the traditional day. We are waiting to see the doctor and hope that will give insight into the degree to which she is effected by nacrolepsy. The sleep study will be even further down the road and past the time a decision on school is made. My gut tells me the boarding school would be way too much, but worry about writing it off. The concern is two fold. First, what if she can't make it through a traditional school day and second, what if the built in naps are exactly what she needs. Many thanks.

#29 interclub

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Posted 13 April 2011 - 07:44 AM

Trust me even with meds to stay awake she will be able to nap.. In fact my son who is on Provigil 200 mg 2x day still naps. The hope for the 11AM dose of Provigil is that with it in the background it will make it easier for him to wake up.

The boarding school sounds like a lot. Assuming its like many she would be required to do a sport which is good for their metabolism which slows down with Narcolepsy. How much down time will she have, will she be able to get some homework in? How willing are they to help with her schedule? How willing is the traditional school to help/work with you?


This info regarding the meds is very helpful. Thanks.

The boarding school is a lot for a student even without nacrolepsy. My daughter is a great athlete and started gaining weight over the past year and a half while we floated around knowing something was wrong, but not sure extactly what. In Feburuary, when I came across nacrolepsy, we realized it might be something she wouldn't out grow and she did a terrific job taking some of the weight off and is back in top form. With regard to the sports, yes, they are required to do 3 season sports at the boarding school. I have spoken to them and they are more than willing to accomadate my daughters needs. The irony is that, even in the traditional school, the sports would be an essential for my daughter to have a full experience. The high caliber of the sports program at the traditional school is one of the initial attractions to that school for my daughter. It might be that in the boarding school the flexibility to miss a practice is much more workable than at a school with a very competitive program in which players are cut ,etc. This is something I will ask when I meet with a team from the traditional school this week.

Many thanks.