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#1 sonoranmomma

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Posted 05 July 2012 - 11:41 AM

My son is 6 and we are working through a dx for him, I finally have a Dr who understands that I want it more for how to cope at school than the drugs (at the moment) He is going into first grade and in Jan of this year he had a episode of cataplexy we had no idea what was happening, he was unresponsive even in the ER for over an hour. SInce then he has fallen asleep in class (not everyday) but has fallen once thankfully he was on the carpet sitting at the time. During a 4th grade band concert (god bless him) and other places that he just should not. The teachers and the nurse are scared to death of him, I think more so because we do not have a concrete dx, I hope to go back to school with it and to set up an IEP plan for him. I know my Dr will help with this but I would love to hear what has worked for others.

WE have a great school district and a comapssionate staff, maybe overly compassionate. He is in a dual language program and next year will switch classrooms half way through the day, I think this will help to have to get up and move, but I worry about things like working on independant work and reading as he gets older, taking standardized test etc. He is a great student and I hate to think what this will do to him when he leaves the high stimulus of kindergarten class.

I am a preschool director and I see things like seats that wiggle for ADHD kids so they can move and not be distruptive, I wonder is something like that would help him they are half balls with a flat top that move, might have him react to falling asleep or it could help him fall quicker....I just want to consider all options! I have read about service dogs to help keep you alert and even read about them helping people stay alert enough to drive.


Any advise would be helpful!

#2 malachi777

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Posted 05 July 2012 - 06:45 PM

My son is 6 and we are working through a dx for him, I finally have a Dr who understands that I want it more for how to cope at school than the drugs (at the moment) He is going into first grade and in Jan of this year he had a episode of cataplexy we had no idea what was happening, he was unresponsive even in the ER for over an hour. SInce then he has fallen asleep in class (not everyday) but has fallen once thankfully he was on the carpet sitting at the time. During a 4th grade band concert (god bless him) and other places that he just should not. The teachers and the nurse are scared to death of him, I think more so because we do not have a concrete dx, I hope to go back to school with it and to set up an IEP plan for him. I know my Dr will help with this but I would love to hear what has worked for others.

WE have a great school district and a comapssionate staff, maybe overly compassionate. He is in a dual language program and next year will switch classrooms half way through the day, I think this will help to have to get up and move, but I worry about things like working on independant work and reading as he gets older, taking standardized test etc. He is a great student and I hate to think what this will do to him when he leaves the high stimulus of kindergarten class.

I am a preschool director and I see things like seats that wiggle for ADHD kids so they can move and not be distruptive, I wonder is something like that would help him they are half balls with a flat top that move, might have him react to falling asleep or it could help him fall quicker....I just want to consider all options! I have read about service dogs to help keep you alert and even read about them helping people stay alert enough to drive.


Any advise would be helpful!


First, I am sorry your young son has to be dealing with these issues. Being a narcoleptic myself, with a nephew who is also narcoleptic, I can tell you your son will have a difficult time in school if this is his diagnosis. Be sure they check him for various seizure disorders as well. This could be causing his attacks.

If his diagnosis of narcolepsy is confirmed and he is not medicated, you will be setting him up for failure and a very low self esteem. I spent my educational years un-medicated and struggled more than you can imagine. For some reason, narcoleptics also suffer with major ADD. I know I could read one sentence and not be able to tell you what I just read. I frequently forgot homework, fell asleep when I got home and did not complete my homework.

My nephew was making C, D, and F's on his report cards and school work until his diagnosis and medication was prescribed. He just graduated National Honor Roll. Without the medication, he would have dropped out of school. If your child is diagnosed, he qualifies for the 504 Plan and IEP. Make sure you get the ball rolling on this issue before school starts. This will allow him un-timed testing, a chance to leave to take a short nap, etc...

I know you do not want to medicate him but it would be abuse not to. I am 41 years old and after five doctor's told me they would not prescribe amphetimines because of a heart rhythm disorder, I finally found a psychiatrist who was willing to try. Well, I am happy to tell you, for the first time in my life, I remember everything I read, I no longer forget simple tasks and I can honestly say that I am very intelligent. I believed I was dumb my whole life and regret I could not be medicated after all these years. I missed out on most of my life with sleep, and while awake, I was always confused, tired and iritable.

These are the positive changes that have ocurred since being medicated:
1. I can stay awake all day as long as I am physically active or if I am thinking or reading.
2. I retain most information I study.
3. My blood pressure has actually dropped, rather than rise while on amphetimines.
4. For the first time in my life, I am happy.
5. I now have spark for life.
6. Since I was not able to go to college because of narcolepsy and being un-medicated, I am now looking in to enrolling.

I can go on and on. If your son does have narcolepsy, do not discuss his disability around him. What I mean is, do not tell him that he will not be able to do certain things. Always reinforce him with compliments and tell him he can do whatever he wants in life if he works hard. Obviously, this is not true, but it will give him the drive to succeed. Do not let narcolepsy be his excuse to the path of failure.

Unfortunately, I have read numerous posts on here where narcoleptics push it and want every possible accommodation they can get and this is not necessary. We need help in any way we can get it, but we do not need to take advantage of all the assistance that is out there. Although I have not worked more than 30 hours per week due to the condition, I have never been unemployed and will work as long as I can. My doctor has tried to get me to apply for Social Security for many years, but it isn't in me. As long as I can continue to be a hard worker and give everything I can to be a responsible tax payer, I have succeeded.

I was always able to find a way to get a quick nap. When I say quick, most times, it was a three to ten minute nap. Fortunately, when a narcoleptic does take a nap that short, our brains think it was much longer. Don't get me wrong, when I came home from work, I would sleep 4-6 hours every day after arriving home and it was usually within the first 20 minutes of getting home. I would recommend having his teachers make him the "mail boy" to run errands when it appears his attention is dwindling or he appears to be getting sleepy. It does help. Anytime I was at work and I felt the sleep attacks coming about, I would stand up and walk for a few minutes. The most important thing you need to make him do on a daily basis is to take a nap after school, before homework. I hope this helps. Michael

#3 sonoranmomma

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Posted 06 July 2012 - 10:39 AM

Thank you so much for your reply.

They have check for seizures and done EEG MRI CAT scans you name it. When we took him in unresponsive he had every drug panel known to man to make sure it was not a poisening drug or otherwise. Sugar levels nutriution etc. All in the normal range.

It is also helpful to know how much the drugs have helped you that makes me feel better about the thought of it all. The thought of it all is scary and you made it that much easier to accept that it sounds like the right things to do.


I agree with you, I want him to work hard and do all he can without having to use the system, but it seems like some accomidation might be nessasary I am worried as we get into older grades and independant work and reading. So I would like him to have that plan in place should be need it and you had some great ideas. My cousin has it and was not dx until later in life and after he struggled through school, did it but worked harder than his peers.

I battle my own unseen chronic illness so I know how people can be, and it mostly comes from a lack of understanding. I want to understand as much as I can so I can be a support to my son.

Thank you.

#4 merrymom1013

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Posted 06 July 2012 - 08:44 PM

I don't know what it's like to have narcolepsy, but I do have a daughter who has been living with it for almost 9 years, through middle and high school, and now college & work. I've also been developing IEPs & 504 plans for students with all kinds of disabilities for 30 years.
ADHD accommodations can be helpful. Our kids have trouble maintaining focus & concentration just like ADHD kids- just for different reasons. Why not a special bouncy type seat for certain activities (if there's a carpeted floor or mat underneath)? My d guess is it would be better for key activities rather than all day.
Think breaks- getting up & moving around, maybe a nap time. Maybe a shorter school day? Limited homework? Accommodations in the time for completing work & amount of work. Maybe 10 math problems instead of 20, etc. Copies of notes, extra testing time etc are more for older students. My daughter was better able to maintain alertness & avoid cataplexy in a cool room. If sleep attacks or cataplexy are frequent, there may be some restrictions on climbing in gym or recess, sending him up or down the stairs or to the rest room alone.
His doctor can advocate for some safety accommodations prior to a firm diagnosis based on his symptoms. Schools provide temporary 504 plans for students with a broken arm or leg all the time. You're right about needing a diagnosis for long term accommodations whether through a 504 plan or an IEP. Once you establish the need & put a program in place, the actual accommodations can change year to year as needed.
I can understand your reluctance to start with medication in a child so young and without a firm diagnosis. When my daughter developed symptoms she was a bit older (10-11). Trying any and all medications was a no-brainer for us because she had gone from an active successful kid to one who couldn't function and was having severe cataplexy. Certain periods, when the symptoms were first "blooming" and through early adolescence were a challenge even with medication. Until you reach the point of being ready to medicate, know some people report that a high protein diet (a protein snack- there's another accommodation) &/or a gluten free diet are helpful.

#5 sonoranmomma

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Posted 09 July 2012 - 03:08 PM

merrymom-

Those are some great ideas. We live in Arizona and hot rooms are an issue! He was taking a summer school class and the air conditioning was not working and I was with him and he fell asleep twice while I was sitting right next to him, drolling the second time.
There are some gret ideas I will bring to the school at the start of the year.

Thanks!

#6 Sara123

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Posted 25 July 2012 - 05:20 AM

I am so excited to see your post! My son is 6yrs old (almost 7) and was diagnosed last October, although he had his first episode at 4yrs old. My biggest issue through this whole process is having no one to talk to who understands what I'm going through, therefore seeing your post is, for me, a relief. We live in Australia & my son is in Year 1 at school. He had a fabulous Kindergarten teacher last year (our first year of schooling) & I believe she is the main reason we were able to get a diagnosis so 'quickly'. She was more than diligent, set a very high bar for note taking (specialist is using her notes as an example to show other teachers & parents, etc).
This year his teachers are not quite so diligent & I have developed my own reporting form & have asked everyone to use it so I have consistency in reporting. 'fell asleep' is not adequate reporting for me. My son was originally diagnosed with Isolated Cataplexy though & since October it's been pretty much regulated. Before he was medicated, he was having upto 6 episodes a day & spending more time at home thank preschool/school. Unfortunately in the past 2 months, he's had an increase in episodes & is very tired & sleeping a lot - his specialist thinks he's also developed narcolepsy. We are starting new medications tomorrow & I'm totally stressed about it. Thankfully his school is totally on board & even though his teacher this year isn't as dilligent, she is still good & open to suggestions.
I guess from my perspective, that's the biggest challenge, getting the school on board & being supportive & willing to help, listen, talk, etc. I have told my sons school that at any time the principle or his teacher can call his specialist & talk through his issues if needed & last year his teacher & specialist spoke only slightly less than me. My sons classmates are great also - they are so calm, don't discuss it (because he hates talking about it), & when he has an episode, they simply tell the teacher calmly. When he had an episode at a party in a ball pit, they formed a circle around him while 3 of them came to get me from the parents table. We are lucky also because it's a small school & he has the same peer group each year.
I had been a stay-at-home-mum & had planned on returning to work when my son went to preschool (3 1/2 yrs old). Just as I thought I'd settled him in and I was about to job hunt, he started having episodes & I started what would become known as 'the hospital run'. Thankfully it wasn't critical for me to work & I've only just returned casually this year. But we have had to make sacrifices because of this such as holidays & even when we have been able to get away, the entire trip is planned around his condition & minimum routine change. For example, bedtime remains 7:30pm & rest breaks are scheduled - often by making sure we are in the car so he doesn't feel like he is 'different' to my other children.
I would love to MSG more back & forth - as I said before I have had no contact with anyone else who has a child this young with this condition. We will probably get my son a private tutor if he misses much more work & that is something we are already planning on once he's at high school. He will also go to a private high school & that will be chosen according to how they can meet his needs & thankfully we have some great private schools in the area. Thankfully we're able to budget for that now & he's my youngest of 4 so we won't have all the other children's schooling bills at the same time. But I think the most important part is that I am my sons biggest (& noisiest if needed) advocate & I'm on top of his health, schooling, physical, psychological & social networks at all times so I can help him navigate this condition.
For now though, I have gone on for long enough.
All the best,
Max (Maxine)