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#1 tdmom

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Posted 15 March 2011 - 07:22 AM

Hi everyone.
My 15 year old sophomore was diagnosed with Narcolepsy in December. For the past year and a half he has had deteriorating performances in school. We have him on a 504 plan that includes extended time for assignments. I am trying to get him to learn to speak up and let his teachers know when he will need extra time. He is the first student in his high school to be diagnosed with Narcolepsy. This is far more of a challenge then I thought. trying to teach him to organize his time is much more difficult then I expected. Any other mothes on the board? What did you do to help your child/high schooler?

#2 merrymom1013

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Posted 18 March 2011 - 05:38 PM

Hi tdmom,
Not a club you would want to join, but here we are. I am no longer the parent of a high schooler- she is now a college freshman. Her symptoms were severe in the beginning of high school & not well controlled. At different periods she required total home instruction & or online classes. When she was in school, we looked at things like a study hall 1st period in case she needed a later start, or a study hall before or after lunch in case she needed a nap,at times, reduced homework, extra time & breaks on exams & SATs, air conditioning (her classrooms were so hot they triggered cataplexy & sleepiness, copies of notes or ability to tape lecture classes, education (information) for her teachers about the disorder. When her needs went beyond what they could provide with the 504, we went with an IEP, but I don't think the vehicle is as important as the accommodations. When things were going well, pretty much the only accommodations she needed were the extra time for tests.
She was very self conscious about asking for accommodations, especially in her early days of living with the narcolepsy. She just wanted to be normal & not draw attention to herself. The school thought I was being over the top with wanting supports for her since she tried so hard to seem ok, or that she was just looking for an advantage. Eventually she got more comfortable speaking up & using the accommodations. It's hard because teens don't appreciate your help. I felt like I was sometimes fighting my daughter who would sabotage herself just as much as I was fighting to put accommodations in place that would offer her a chance of success. A counselor who gets chronic illness might be a help, as might a study skills/ time management "coach" who specializes in ADHD.
While your son's school may not have experience with narcolepsy, they should be pros with ADHD strategies & may well get what it can be like living with other autoimmune & neurologic diseases like rheumatoid arthritis, MS or epilepsy. Help them make some connections so they get that this isn't just needing more sleep, but a chronic neurological condition that your son has to come to terms with.
If your son was just diagnosed, know that it can take a while to get him to his best possible functioning with the medication, and for your son to learn how to live with this. It may get somewhat easier in time.
As one who has been there, I feel for you. The narcolepsy just adds one more layer to the stress of parenting a teenager. Try to remember that he will grow up!

#3 narcomomanddrumgirl

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Posted 19 March 2011 - 12:36 AM

Hi tdmom.

I am the mother of a 17 year old high school student. She was diagnosed last summer, just before her Junior year started. But we had been watching for it for a couple of years. Lucky for her, I also have Narcolepsy with Cataplexy. Why lucky? I was mis-diagnosed for 15 years and given every type of anti-depressant. They were about to do the same thing to her, but because of my history, I kept pushing for proper testing. Since then, we have found 4 other family members with it and a few more suspected but wont get tested. She, too, is reluctant to ask for any help at school. I've pushed at school for the 504 plan, which has really helped, but just a little bit because they don't know anything about Narcolepsy either. We have just received word back from her counselor that the collegeboard has denied our request for testing accommodations on AP and SAT tests. When asking the counselor, "what happened?", he seems unaware and vague. Seems that I've either filled out the forms incorrectly or the information they added to it did not go over well. This will take some checking into on my part as the counselor seems to have washed his hands of it and he needs to take back control.

My daughter was very hard on herself and was (is) fighting some of the things that can help her succeed. At first she thought she was being allowed to cheat. Her GPA was 4.3, now a 4.0 - Wow! What is there to complain about, right? Well, two of her teachers did not want to hurt her by giving her the true grade she "earned". Third year Latin - 1st semester - earned "F" - received "B+" and then College Level English - 1st semester - earned "F" - received "C+". They completely saved her bee-hind by not counting all of the missing assignments. They decided to grade her only on what she had turned in, and even that wasn't great in most cases because she was trying so hard to stay above water in her other classes.

She is currently dropping a little further since stress is her trigger. She fell asleep during a timed essay this week but did not tell her teacher and took the hit to her graded assignment - the same teacher that gave her the C+. He would have totally been understanding. I wonder, too, what can we do for them during this time when they want so much independence, yet need their parents' unwanted guidance.

What I do know is that it takes awhile to get used to the medications. That feeling of needing to stay up to work on a report or catch up on homework rather than taking her Xyrem is both understandable and very frustrating. When I go into her room to wake her for her second dose, there she is passed out with her neck all crooked, pen in hand and notebooks everywhere. It was most definitely easier to deal with their sleep habits when they were two years old.

It did help quite a bit to take her to the Narcolepsy Network convention in Washington D.C. in October last year. Having been to one prior myself, I knew she would find teenagers and young adults there. She is looking forward to the next one coming up. Her plans for this summer are to take one or two city college classes - something fun - that will help lighten the load for her senior year coming up.

If anyone out there has specific information on the collegeboard SAT testing accommodations, please let me know. It may be too late for this year, but I don't know much about it.

#4 merrymom1013

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Posted 21 March 2011 - 07:39 PM

The SAT collegeboard website can be your best friend. If you search around on it you'll find exactly how to apply for accommodations & how to appeal the rejection. It may be difficult to get accommodations such as extra time if your daughter doesn't use those for exams etc.
My daughter was initially denied accommodations- we followed the appeal process & were successful. It was very helpful to her to have time and a half (easier to get then double time). You can also request extra breaks & the testing broken up over 2 days so she won't have to remain alert over so many hours. The key is giving them exactly what they say they need, not just what your guidance counselor routinely submits. Sometimes they reject requests of students who don't have an established history of needing accommodations. In that case, you may need to provide more documentation than the school routinely sends.
They don't automatically approve accommodations just because the school offers them- the accommodations may not be exactly the same or as generous.
You may be too late for this year or you might be able to get it reviewed by June testing. If your daughter will be a senior next year, it's definitely worth pursuing as she could take the SATs in fall of senior year.

#5 tdmom

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Posted 21 March 2011 - 08:20 PM

Than you Merrymom and narcomom for answering. Posted Image It is so nice to hear of others going through this, even thought the reason we are all communicating is lousy.Posted Image

We saw the neurologist todaybut spent more time with the fellow who I liked a lot, although she will be gone in July. We see the attending each time but he is much more businesslike and appointments are much rushed. We will be increasing the provigil to 200 mg 2xdaily (it was 200 mg in am) and increasing Prozac to 30 mg day. The attending said if things weren't better in June we would try Xyrem.

One thing that is hard is my son will not take a nap in school due to his full schedule. I need to speak to the school counselor about next year and see if we can do something to give him a free period. The school has been great but since he is the only one dx'd with narcolepsy its just new to them all. 2000 kids and he's the first?? One thing pointed out to me is that he can be given extra time for the assignments but if he is behind then he won't understand what they are doing currently in class. And then of course I wonder if its lack of motivation even though I know better. He's the youngest of 3 boys and old habits die hard.

I am thinking of the NN conference in October in Las vegas. I think it would be great for him to meet others with N and for me also.

Nice to meet you all.

#6 momofteen

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Posted 23 March 2011 - 09:55 AM

My daugher is 16 and a junior in high school. She has always been very smart, straight a's in middle school. Once she was a freshmen she kept complaining about not being able to concentrate, teachers being mean, etc. We just chaulked it up to her busy extracurricular activities were making her tired-she is on student council, in the pit band for school's show choir, softball, ski club, etc. She would sleeep sleep sleep the next week whenever she had a weekend activity. We kept telling her that she was taking too much on and that's why her grades were not as good as they used to be-it had to be the explanation for her "zoning out" in class and not paying attention and kept encouraging her to give up some of those activities. Well, when she turned 16 and got her learner's permit she was driving with Dad. She "zoned out" while driving and was in the oncoming lane, dispite his trying to get her to come too.Luckily she came too just before head oning a truck!! SCARY!!! We called her pediatrician that next Monday morning and she has had soo many tests. They thought maybe at first she had a seizure. She was referred to neurology dept at Boston's Children's Hospital where immediately they knew she had narcolepsy. She has undergone many many tests-MRI, 24 hr EEG, sleep studies, gene testing, etc. and has been officially diagnosed.

The dr started her on 100mg of Provigil and all she did was cry. Even when going to a competition in New York City over this past weekend, she was calling me from the bus wanting to come home-crying constantly -she loves her competions, this was so unlike her. The dr had us discontinue that drug and will now start her on Concerta but I am afraid of side effects also..I asked about a 504 for her because between all the days missed for her appointments, and not being able to concentrate, she feels like she is spiralling downward out of control in her classes. She has the ability to be an A student but just received an F on her progress report-yikes. I am very worried because I know how much junior year means for college acceptances.

I have read that some kids benefit from recording their classes-has anyone of your kids done that? Have you tried that Dragon Speak for the computer-when she writes notes for studying she never remembers anything?I am at a loss as to what to do to help her so any advice from other parents would be great

#7 tdmom

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Posted 25 March 2011 - 10:59 PM

My daugher is 16 and a junior in high school. She has always been very smart, straight a's in middle school. Once she was a freshmen she kept complaining about not being able to concentrate, teachers being mean, etc. We just chaulked it up to her busy extracurricular activities were making her tired-she is on student council, in the pit band for school's show choir, softball, ski club, etc. She would sleeep sleep sleep the next week whenever she had a weekend activity. We kept telling her that she was taking too much on and that's why her grades were not as good as they used to be-it had to be the explanation for her "zoning out" in class and not paying attention and kept encouraging her to give up some of those activities. Well, when she turned 16 and got her learner's permit she was driving with Dad. She "zoned out" while driving and was in the oncoming lane, dispite his trying to get her to come too.Luckily she came too just before head oning a truck!! SCARY!!! We called her pediatrician that next Monday morning and she has had soo many tests. They thought maybe at first she had a seizure. She was referred to neurology dept at Boston's Children's Hospital where immediately they knew she had narcolepsy. She has undergone many many tests-MRI, 24 hr EEG, sleep studies, gene testing, etc. and has been officially diagnosed.

The dr started her on 100mg of Provigil and all she did was cry. Even when going to a competition in New York City over this past weekend, she was calling me from the bus wanting to come home-crying constantly -she loves her competions, this was so unlike her. The dr had us discontinue that drug and will now start her on Concerta but I am afraid of side effects also..I asked about a 504 for her because between all the days missed for her appointments, and not being able to concentrate, she feels like she is spiralling downward out of control in her classes. She has the ability to be an A student but just received an F on her progress report-yikes. I am very worried because I know how much junior year means for college acceptances.

I have read that some kids benefit from recording their classes-has anyone of your kids done that? Have you tried that Dragon Speak for the computer-when she writes notes for studying she never remembers anything?I am at a loss as to what to do to help her so any advice from other parents would be great


Well I am a newbie also. Who are you seeing at Children's? I am in the eastern MA area, we are seeing Dr Kothare, I guess the only other choice is Dr Ferber. We started Provigil, Prozac, Melatonin, and Iron in December. We did provigil 100 mg x 1 week, and then increased it. I thought sometimes you had to give the med time maybe she would adjust to it?

I have just started looking into recording classes, and I am going to look at the Dragon Speak also. I got on a mailing list for a support group out of Lahey (at the suggestion of Dr Katherine Dudley at Children's but there have not been any meetings yet.
Lets stay in touch.

#8 magpie

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Posted 26 March 2011 - 11:26 AM

Not a parent, but my EDS started when I was in high school and had Epstein-Barr, and some of the accommodations for EBV and Mono would be similar for someone with N or something else that causes EDS. High Schools deinfitely have a lot of kids with Mono, and are probably used to making accommodations for them- extra time for assignments and tests, allowing for missed classes. I was 'lucky' because I got EBV my senior year when I was done with most of my requirements and had a few days with a later start time, but I had a few classmates who wound up having to drop a class mid-semester and make it up in summer school. Not an ideal situation, but a possibility to consider.

#9 The Mom

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Posted 30 March 2011 - 02:52 PM

Hi everyone.
My 15 year old sophomore was diagnosed with Narcolepsy in December. For the past year and a half he has had deteriorating performances in school. We have him on a 504 plan that includes extended time for assignments. I am trying to get him to learn to speak up and let his teachers know when he will need extra time. He is the first student in his high school to be diagnosed with Narcolepsy. This is far more of a challenge then I thought. trying to teach him to organize his time is much more difficult then I expected. Any other mothes on the board? What did you do to help your child/high schooler?


I have a 16 year old son that was diagnosed in December also. He has been struggling with anxiety and depression since he was 10 so this is a new (or added) name to many years of struggle. I had a bit of a meltdown last night about his whole situation and decided I needed some support too, so I joined this network. It is comforting to find some kindred spirits out there. He has had an IEP since middle school and my biggest hurdle is motivating him. I included extra texts for home, extended time on tests, having teachers help him catch up if he falls asleep in class, and a grace period for late assignments. He is allowed to use the school's computers to type his assignments in class (writing takes more energy than typing). He does not always take advantage of this because it does make him feel a little different. We did get approval for extra time on the SAT's. However, even with all the help in place, he doesn't take the extra time for testing, he would just rather be done with it quickly and be out of there. He admits it just takes too much energy to take the extra time. He is required to go to the after school homework help club too. That does help. He did, however, join some clubs so he didn't have to go all the time. I let him join because he does isolate himself sometimes. It takes a lot of energy for him to have friends and has become quite the home body.

#10 tdmom

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Posted 30 March 2011 - 08:51 PM

I have a 16 year old son that was diagnosed in December also. He has been struggling with anxiety and depression since he was 10 so this is a new (or added) name to many years of struggle. I had a bit of a meltdown last night about his whole situation and decided I needed some support too, so I joined this network. It is comforting to find some kindred spirits out there. He has had an IEP since middle school and my biggest hurdle is motivating him. I included extra texts for home, extended time on tests, having teachers help him catch up if he falls asleep in class, and a grace period for late assignments. He is allowed to use the school's computers to type his assignments in class (writing takes more energy than typing). He does not always take advantage of this because it does make him feel a little different. We did get approval for extra time on the SAT's. However, even with all the help in place, he doesn't take the extra time for testing, he would just rather be done with it quickly and be out of there. He admits it just takes too much energy to take the extra time. He is required to go to the after school homework help club too. That does help. He did, however, join some clubs so he didn't have to go all the time. I let him join because he does isolate himself sometimes. It takes a lot of energy for him to have friends and has become quite the home body.



It can be such a catch 22! My son is on the track team even though he should be at home working at school work but he needs the social interaction. With his 504 he gets extra time for homework but if he doesn't get it done then he doesn't get what they are talking about in school. We just added a dose of provigil at noontime, we'll see how that works.

#11 The Mom

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Posted 31 March 2011 - 07:31 AM

It can be such a catch 22! My son is on the track team even though he should be at home working at school work but he needs the social interaction. With his 504 he gets extra time for homework but if he doesn't get it done then he doesn't get what they are talking about in school. We just added a dose of provigil at noontime, we'll see how that works.

My son is on Provigil too and only helping a little. The doctor wants to hold off on adding new meds. He wants me to get him on a regimented wake schedule all week long. I am not looking forward to that. It is hard enough to get him out the door for school. Now I have to wake him up early on weekends and spring break too. Ugh! Do you have to do that too?

#12 tdmom

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Posted 31 March 2011 - 09:17 PM

My son is on Provigil too and only helping a little. The doctor wants to hold off on adding new meds. He wants me to get him on a regimented wake schedule all week long. I am not looking forward to that. It is hard enough to get him out the door for school. Now I have to wake him up early on weekends and spring break too. Ugh! Do you have to do that too?



absolutely. he is suppose to go to bed 10 pm to 6 am sunday - Thursday , 12 - 8 Friday and Sat. A nap at 11:30 (in the medical area of the high school), a nap at 2:30 when he gets home. Meds = 200 mg provigil and 30 mg prozac every am, 2 tabs ferrous sulfate at dinner with OJ, 3 mg Melatonin and nasal spray at night. And now the Dr wants to add 200 mg Provigil at 11:30 am at school. I have cheated and let my son sleep til 9 or 9:30 on occasion. Its very hard let alone the fact that all teen agers have circaidian sleep changes. Now we have to drive our son to school as he can't make the bus if he sleeps til 6 am, it comes at 6:35.

#13 The Mom

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Posted 01 April 2011 - 06:06 AM

absolutely. he is suppose to go to bed 10 pm to 6 am sunday - Thursday , 12 - 8 Friday and Sat. A nap at 11:30 (in the medical area of the high school), a nap at 2:30 when he gets home. Meds = 200 mg provigil and 30 mg prozac every am, 2 tabs ferrous sulfate at dinner with OJ, 3 mg Melatonin and nasal spray at night. And now the Dr wants to add 200 mg Provigil at 11:30 am at school. I have cheated and let my son sleep til 9 or 9:30 on occasion. Its very hard let alone the fact that all teen agers have circaidian sleep changes. Now we have to drive our son to school as he can't make the bus if he sleeps til 6 am, it comes at 6:35.

Wow. Now when he goes to bed at 10pm, does he actually go to sleep? My son will be in his bed by 11pm but often does not go to sleep until after 1pm.

#14 tdmom

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Posted 01 April 2011 - 07:53 PM

Wow. Now when he goes to bed at 10pm, does he actually go to sleep? My son will be in his bed by 11pm but often does not go to sleep until after 1pm.


It has been very difficult to get him on this schedule. Usually I can get him upstairs by 10:30. If he takes the Melatonin 3mg he does go to sleep right away and will have trouble waking in the morning. In fact sometimes he falls asleep in the computer chair and I have to practically drag him upstairs. I wake him at 5:40, give him his meds and wake him again at 6. He just started with a dose of Provigil 100 mg x1 week then to increase it to 200mg. One day he took it at 1pm, not 11:30 and had some difficulty.

#15 magpie

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Posted 04 April 2011 - 07:58 AM

Another thing to keep in mind with teens is that their natural circadian rhythms are quite different than children's or adults'. All teens, not just ones with sleep or other disorders, are naturally geared to go to bed later and sleep later. When I was a teen (and even now) I always thought it was unfair that schools and test boards wanted us to take tests and classes so early. I mean, why are the SATs scheduled so early- how can people be at their best at 8:30 in the morning? I can't imagine, even now, having to get up at 6 AM at all let alone having to be functional. Here's a link to an article from the Mayo Clinic about teens and sleep. And the very least it might help teens with sleep disorders, their parents, and educators, to not feel like they are alone in this. Not the same has N, but not uncommon for teens to have such a hard time being rested: http://www.mayoclini...-health/CC00019

On another, and more humorous note, I was watching a Chris Rock interview (I swear its related) and there was a clip about him discussing being bussed to a predominately white school- He had to get up at 6 AM since he lived far away and then had to compete against kids who got to sleep until 8. His response who would sent home notes "Chris is having trouble reading" "No, Chris is Tired!"

#16 momofteen

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Posted 05 April 2011 - 01:35 AM

Well I am a newbie also. Who are you seeing at Children's? I am in the eastern MA area, we are seeing Dr Kothare, I guess the only other choice is Dr Ferber. We started Provigil, Prozac, Melatonin, and Iron in December. We did provigil 100 mg x 1 week, and then increased it. I thought sometimes you had to give the med time maybe she would adjust to it?

I have just started looking into recording classes, and I am going to look at the Dragon Speak also. I got on a mailing list for a support group out of Lahey (at the suggestion of Dr Katherine Dudley at Children's but there have not been any meetings yet.
Lets stay in touch.


wow, small world...We also see Dr Kothare. Our visit last week was such a waste though...something that should have just been a phone call. We literally sat in his office for five minutes while he looked over her sleep study results and than said he agreed with Dr. Wolff's decision to take her off Provigil and increase the concerta to54mg. I know he is the expert and I respect this. She is much more alert on the higher dose of the meds. but he diagnosed her with Hypersomnia narcolepsy, meaning she'll always need more time for sleep and wants her in bed no later than 9pm.. Her meds haven't even worn off by then and she is still usually doing homework then. He doesn't want to start her on anything to help her sleep until the fall...wants her to be on the higher dose of Concerta for the remaining 2 months of school, see how the summer goes, then we go back to see him. I think I will try the melatonin...hope that natural substance will help her. He wants us to have her nap during the day, but a 20 minute lunch is not enough time, and we can't even schedule a study time for this time because our school has a rotating schedule, where they start with a different mod each day, so study time is never at the same time.

Of course, she is still having a hard time in school. The meds are helping her remain more alert, but she still has microsleeps occaisionally and last one was during history test. Good thing this teacher is more understanding. One of her other teachers is not being so nice. She has been trying to get her makeup work done now that she is able to think a little more clearly but her teacher made her do two quizzes out of the classroom, without preparing for them, and then next day gave her another quiz on the material the class just learned while she was out of the class doing the tests. I will be making more phone calls in the morning. Her guiadance counselor is still trying to get the 504 set up, but doesn't think the school will allow tape recording of the classes...?????I truly do not understand why not. Good think hubby is s special ed teacher and knows all the right phrases to use, and knows what she is entitled to. The big guns are coming out in the morning.

I would love to get the information on the support group at Lahey Clinic. I think is would be so helpful to her. She is having a hard time with some of her"best friends" not believing that she has this condition and they think she is making it up. I know she could use someone to talk to who is in the same boat as she is. I hate to say this, but I am thankful for her boyfriend..He has been such a shoulder for her, a real nice kid, sticking with her the whole way...only problem is that he IS A BOY...if you catch my drift..lol. Who is Dr Dudley? Is this your neurologist? As I sais, We see Dr Wolff, who has been great, but he is transferring her narcolepsy care to Dr Kothare.

Thanks for responding...we parents definitely need to stick together to help us get through all of this also....

#17 momofteen

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Posted 05 April 2011 - 01:50 AM

I have a 16 year old son that was diagnosed in December also. He has been struggling with anxiety and depression since he was 10 so this is a new (or added) name to many years of struggle. I had a bit of a meltdown last night about his whole situation and decided I needed some support too, so I joined this network. It is comforting to find some kindred spirits out there. He has had an IEP since middle school and my biggest hurdle is motivating him. I included extra texts for home, extended time on tests, having teachers help him catch up if he falls asleep in class, and a grace period for late assignments. He is allowed to use the school's computers to type his assignments in class (writing takes more energy than typing). He does not always take advantage of this because it does make him feel a little different. We did get approval for extra time on the SAT's. However, even with all the help in place, he doesn't take the extra time for testing, he would just rather be done with it quickly and be out of there. He admits it just takes too much energy to take the extra time. He is required to go to the after school homework help club too. That does help. He did, however, join some clubs so he didn't have to go all the time. I let him join because he does isolate himself sometimes. It takes a lot of energy for him to have friends and has become quite the home body.


I totally agree with you about the parents needing support also. That is also why I joined, even though I havent checked in in a bit. I wish my daughters teachers were being as helpful as your sons. And we do not have an afterschool homework help club. My daughter did go to guidance on her own and asked for a peer tutor, which she can use during study. But hasn't really been that helpful. My daugher is totally starting to isolate herself from others alot more now...she has always been a very social person, involved in eveything, gettiing together with friends, but has had to stop most things. Good thing show choir season is over, because another bad weekend this past Saturday. Between the long day at competition and the whole friend thing going on, she spent alot of time alone....very unlike her. We are actually becoming very concerned because it is so very unlike her to be removing herself socially. As she said she has had so much going on with all the medical stuff that she is having a hard time emotionally dealing with it (we also found out about a cardiac problem amongst all of this) We are thinking of finding someone for her to talk to , just because I see her becoming more and more depressed about it all. and as you said, the amount of energy it takes to fit everything in is hard, and she has had to pick and choose what to do for the first time, so of course her boyfriend is coming before friend time.

Maybe we can pass ideas off of each other as we leard to live with this crazy condition

#18 tdmom

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Posted 05 April 2011 - 07:29 PM

wow, small world...We also see Dr Kothare. Our visit last week was such a waste though...something that should have just been a phone call. We literally sat in his office for five minutes while he looked over her sleep study results and than said he agreed with Dr. Wolff's decision to take her off Provigil and increase the concerta to54mg. I know he is the expert and I respect this. She is much more alert on the higher dose of the meds. but he diagnosed her with Hypersomnia narcolepsy, meaning she'll always need more time for sleep and wants her in bed no later than 9pm.. Her meds haven't even worn off by then and she is still usually doing homework then. He doesn't want to start her on anything to help her sleep until the fall...wants her to be on the higher dose of Concerta for the remaining 2 months of school, see how the summer goes, then we go back to see him. I think I will try the melatonin...hope that natural substance will help her. He wants us to have her nap during the day, but a 20 minute lunch is not enough time, and we can't even schedule a study time for this time because our school has a rotating schedule, where they start with a different mod each day, so study time is never at the same time.

Of course, she is still having a hard time in school. The meds are helping her remain more alert, but she still has microsleeps occaisionally and last one was during history test. Good thing this teacher is more understanding. One of her other teachers is not being so nice. She has been trying to get her makeup work done now that she is able to think a little more clearly but her teacher made her do two quizzes out of the classroom, without preparing for them, and then next day gave her another quiz on the material the class just learned while she was out of the class doing the tests. I will be making more phone calls in the morning. Her guiadance counselor is still trying to get the 504 set up, but doesn't think the school will allow tape recording of the classes...?????I truly do not understand why not. Good think hubby is s special ed teacher and knows all the right phrases to use, and knows what she is entitled to. The big guns are coming out in the morning.

I would love to get the information on the support group at Lahey Clinic. I think is would be so helpful to her. She is having a hard time with some of her"best friends" not believing that she has this condition and they think she is making it up. I know she could use someone to talk to who is in the same boat as she is. I hate to say this, but I am thankful for her boyfriend..He has been such a shoulder for her, a real nice kid, sticking with her the whole way...only problem is that he IS A BOY...if you catch my drift..lol. Who is Dr Dudley? Is this your neurologist? As I sais, We see Dr Wolff, who has been great, but he is transferring her narcolepsy care to Dr Kothare.

Thanks for responding...we parents definitely need to stick together to help us get through all of this also....


Our school has been great. The teachers have been great so far. Its a huge learning curve for us and for them. A friend who is a teacher told me to stay in contact with the teachers because they see so many students so I email them every other week. Getting my son to speak up is another issue. He of course would like this to all go away.

Dr Kothare is his sleep Dr/neurologist, Dr Dudley is a fellow, which means she has done her med school and residency and is now doing a post graduate fellowship. She is nice but but the whole thing is annoying because we will see her twice and then in June they will be done. Dr Kothare oversees the fellows but I think the switching all the times is potentially an issue.

He wants my son to nap also which we can't do for the same reason. I told my son to keep it in the back of his mind if he has a test in an afternoon class that he can go take a nap but he will have to make up what ever he misses.

I will call the Lahey in the morning and see what I can find out.

#19 tdmom

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Posted 05 April 2011 - 07:38 PM

Another thing to keep in mind with teens is that their natural circadian rhythms are quite different than children's or adults'. All teens, not just ones with sleep or other disorders, are naturally geared to go to bed later and sleep later. When I was a teen (and even now) I always thought it was unfair that schools and test boards wanted us to take tests and classes so early. I mean, why are the SATs scheduled so early- how can people be at their best at 8:30 in the morning? I can't imagine, even now, having to get up at 6 AM at all let alone having to be functional. Here's a link to an article from the Mayo Clinic about teens and sleep. And the very least it might help teens with sleep disorders, their parents, and educators, to not feel like they are alone in this. Not the same has N, but not uncommon for teens to have such a hard time being rested: http://www.mayoclini...-health/CC00019

On another, and more humorous note, I was watching a Chris Rock interview (I swear its related) and there was a clip about him discussing being bussed to a predominately white school- He had to get up at 6 AM since he lived far away and then had to compete against kids who got to sleep until 8. His response who would sent home notes "Chris is having trouble reading" "No, Chris is Tired!"


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!!

#20 tdmom

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Posted 05 April 2011 - 09:01 PM

My child has ADHD, before he was struggling with he's studies, but now that I have transferred him to a therapeutic boarding schools he performs well. Being in a school that specializes on that disability will help your child to understand his situation. Many children who were once underperforming in traditional schools find themselves flourishing and excelling in private schools that understand their needs.



Our children do not need a Boarding school for troubled teens.