Hi...20 minutes with a timer has worked perfect for me for last 40 years. Any thing longer messes with my circadian rhythm.

I honestly think it’s amazing that he had the self awareness and confidence to say no to the medication, which is another clear indication that you as parents must be an amazing support system for him for him to feel comfortable enough to go against, what I presume, was the medical advice given. I do think it helps that he got his diagnosis early enough though to not need to resort to the medication instantly.
I wasn’t diagnosed until I was 18 and working full time and had just had 11 months of feeling the freedom of driving (and near death experience’s that I couldn’t understand but luckily never resulted in an accident) and so I needed these sleep attacks resolved instantly as my job and freedom depended on it. Now when I have to have medication breaks (on amphetamines so they stop being effective after a while so I go cold turkey and have nothing for at least a week then over 3 days build up my medication dose to the lowest amount I know I can just about function on) I need to have 2 weeks off work, my husband has to have the 1st week off minimum as no medication means I cannot drive and am not even fit to look after my own children safety (mainly the 2 year old, the 8 and 12 year old can mostly sort themselves) and I cannot have any appointments or even family/friend plans because I am just useless and so unreliable.
I would say I used to be a medium/high energy person and I don’t remember feeling as though life was such a constant battle as it feels now even with medication etc but I am not sure if it’s because I have slowly become a very low energy and introverted person or because of natural aging and the brain or because of the 3 kids that each seemed to steal a chunk of my already small energy bubble. Maybe it’s a bit of all of it and scarily it could just be that my memory is yet one of many that I can’t fully trust (could I have been dreaming, do I even remember my life correctly etc) but I would have been interested to see how I would have been with lifestyle changes before the medication changes but I would never even consider dropping the meds now, life requires me being on them despite the scary side effects.
I truly hope that this approach becomes an amazing tool for your son so hopefully he can get by for many years without the need for medication, or hopefully not need them at all. I will definitely be taking your approach if I notice any symptoms in my own children and thank you for sharing your insights too, it’s really helped my view of my narcolepsy too 😊

My son was diagnosed at 7 years old and we parents were overjoyed when we received a bag of medicine that will help him stay awake.

After three weeks our son said - I don't want to eat those pills anymore. We still don't know why he said that, but we removed the medicine.

Now we are so grateful for this. We or he would never know what narcolepsy itself is or any side effects.
The worst case scenario would be that new symptoms appear, and we take new medicine for this. A bad spiral.

Today he makes his journey very well. He is happy, positive, has a lot of friends and school works well. Should this change, then and there we will review medication together with him.

Thanks PatriciaYates2 and Corrina 🥰

Thank you for your thoughts on stress, medication etc. It strengthens me to read your both wise thoughts. Thanks!!!
I will check out your book Corrina😀

The more people I ask who have narcolepsy, the clearer the picture becomes that stress, pressure and demands must be reduced.
Exercise and diet seem to have a big impact.

Even one's own mental attitude towards one's illness is important.

I see sleep breaks as the most important medicine.

Being open and telling others is also important.

In addition, of course it affects who you would be if you did not have narcolepsy, are you a high or low energy person?
For example, I think my son has high energy and is positive and happy as a person. It will help him in his journey. Had he instead been an introvert with low natural energy, he would have had to work even harder to find his way.

I think that everyone who receives their diagnosis should be without medication for, for example, 6 months.

During this time, you should instead review how you live, and start making changes there. In with exercise, sleep breaks, good diet, the mental part, reduce stress, pressure.

Then you will find out how to manage your narcolepsy and how it works without medication. It must be as clean as possible.

Then you put in medicine, or not. Then you will feel your narcolepsy naturally and will feel positive and negative results better.

Now, I don't have narcolepsy myself, so these are just my own thoughts. Do you think I am right or wrong?

I found that the best for me is a schedule, I am on medication now so a scheduled nap after work and usually one or two unwanted dozing spells at work. But growing up in school nobody knew I had narcolepsy so it was extremely hard to manage schooling. It’s great that you are doing everything you can for your son, it’s truly hard to live with narcolepsy and it means a lot when family is understanding and supporting. I recently wrote a book about me growing up with narcolepsy during my school years if you’d like to check it out on Amazon it’s called the journey beneath her heavy feet. For an answer of your question I feel like everyday narcolepsy is different some days are worse than others my best advice is to try to keep a schedule , don’t set bedtime too early where he is waking up during the night, keeping active after school so he doesn’t fall asleep too early, for some reason my greatest big of energy came at night time as a kid, for me a nap of 30 min to an hour every day at the same time works best but some days my body needs more but messing up my schedule affects my symptoms for a few days to follow. Narcolepsy is so hard to manage or explain for even those who live it but I hope this helps a little bit. Good luck to you and your son your a great father for being so supportive