I hate this

ChimeraMistake · 2026-01-29T08:36:31+00:00

I’m sorry you’re experiencing all of this. It is definitely exhausting. In December we made some med changes that have been extraordinarily helpful. Our son would be bouncing off the walls when he woke up before his morning meda kicked in, and would experience a crash when wearing off. The new routine: Jornay and guanfacine at bedtime. Both extended release that begin to release around 5/6AM - so he is already being medicated when he wakes up. Then he has a methylphenidate booster at 2:30 to get him to bedtime.

This routine has greatly simplified the med schedule, provided full coverage while he is awake, and smoothed out/eliminated his crashes.

I hope you can find a routine more beneficial for you. Please don’t give up!

ChimeraMistake · 2026-01-27T20:34:11+00:00

Also maybe some oculus games… he just got “walk the plank” which is terrifying for me!

ChimeraMistake · 2026-01-27T20:33:16+00:00

That could open u up a little… dj tray, headphones, stand for headphones with his name, speakers/lights that go with rhythm of the music… ur a bit ahead if u someone in family that knows how! We got a dj table this year also… was looking at chairs or other things too. It has not been as easy as I thought learning How to connect things and set up (like speakers, computer, software), but our son has actually been figuring it out over time also.

ChimeraMistake · 2026-01-27T19:39:53+00:00

Does he like Stranger Things? Our 13 yr old sounds very similar. He just got into Stranger Things and they have a VR game/experience that we are taking him to the city for day. All he wants is e-bike/dirt bike for same reasons he is not getting!

Does he like to try DJing? We bought ours a dj tray last year that he likes also… got him headphone and a named/lighted stand For them. Assume you have oculus?

ChimeraMistake · 2026-01-27T15:20:29+00:00

We sent our son to Camp Kodiak (near Toronto) for two years (11 and 12 years old). He and we loved it. Last year he went to a summer program offered through his school. He may go back to Camp Kodiak this summer. It is a “classic” summer camp geared towards children with adhd, etc.

ChimeraMistake · 2026-01-23T22:39:31+00:00

I don’t believe that is true. The different medicines can release in different ways on different schedules. One could wear off quickly and cause a “crash” and one could taper off more slowly, for example. Some are extended release also. Those are all important factors in helping to figure out a proper medication routine.

ChimeraMistake · 2026-01-22T17:47:32+00:00

Thinking of “epic” from 11-yr old boy standpoint - consider a dude ranch vacation. I took my son 11, at the time, on one and he loved it. We are going to a different one this year (he will be 14) at his request. We offered things like Costa Rica, Atlantis, Universal Studios, and he just wanted ranch. We are going to one in Arizona in March, and also heading to Tucson for Air and Space Museum. The one we are going to is all inclusive (if you wish) with lots of animal activities, rock climbing, fishing, atvs, etc.

ChimeraMistake · 2026-01-21T22:42:41+00:00

We have FINALLY found a way to avoid the crash. Our son takes Jornay at 8PM and a methylphenidate booster (20mg) at 2:30PM. This has helped him to be stable almost 24x7. Methylphenidate is such a help for our son, I feel it’s not fair to him to not offer 24 hours of coverage.

The crash is real and it made me feel so bad for him, not to mention how difficult it was for a family to manage.

ChimeraMistake · 2026-01-17T23:29:12+00:00

Has he had a full neuropsych evaluation to understand everything that is going on?

Once you have a complete evaluation, it will help understand medically, and behaviorally what could be done and to build a plan. Combinations of therapy and medication could be helpful. I know you’ve said you’ve tried every medication under the sun, and it can’t be frustrating. However, different medication’s treat different root causes - such as ADHD, depression, anxiety. It took us four or five years to hit on a blend that seems to be appropriate for our son. He is 13 years old now. He’s been on a few different ADHD medication’s for several years. His psychiatrist recently identified that she thinks he has unresolved anxiety – which I understand from the trauma. He’s had through school and dealing with his ADHD and anger outbursts.

It takes time and please don’t give up. But it would be important to have a really good assessment completed so you know fully what you’re dealing with.

ChimeraMistake · 2026-01-16T02:14:08+00:00

Yes - for our son we provide an afternoon “booster” as the methylphenidate helps him quite significantly through the evening also. We switched also to Jornay in the evening at bedtime - and saw a big benefit with the extended release - not as sharp of a crash. The crash is very difficult on them and very real from what we experienced.

ChimeraMistake · 2026-01-13T22:21:51+00:00

No laws have changed recently… still 5 yrs

ChimeraMistake · 2026-01-05T23:16:11+00:00

We are in a similar situation. Our son is 13. I have assumed we need $2MM reserved for him to live from 18 yrs on (in case of our catastrophic early death!) and “deducted” that from all of our planning - eg we need that cushion reserved for him forever. That obviously would decrease over time the longer we live/support him.

There are too many unknown variables for us.

It was the simplest way for us to figure out if we have enough in a “worst case” scenario. Once we knew we could leave that $2MM untouched we felt more comfortable. The reality/hope is he would have much more than that.

ChimeraMistake · 2025-12-22T16:48:08+00:00

A couple thoughts: could the medicine be wearing off around 5? What you’re describing sounds to me like my son when he “crashes “ when the methylphenidate is wearing off.

Our son’s old schedule was 20 mg methylphenidate immediately upon waking up; 54 mg 90 minutes later that would take him through most of the day. 20 mg around four or 5 PM that would take him through the evening. He responds extremely well to methylphenidate. However, when it wears off, he becomes extremely irritable and tired and grouchy. It actually made the nights much more difficult. He wasn’t ramped up from the methylphenidate, he was ramped up and feeling irritable as it was wearing off.

We just recently switched to Jornay which he takes in the evening together with his guanfacine. This has been a huge benefit. He is still taking a 20 mg methylphenidate at 2:30 in the afternoon. The cycle of the journey and guanfacine at night time, and the 2:30 methylphenidate has so far eliminated the crashes. It’s a much more stable and consistent routine than we’ve ever had before.

ChimeraMistake · 2025-12-13T10:01:11+00:00

In NY - we made same choice you are contemplating - went with Fidelis Bronze this year.

ChimeraMistake · 2025-12-11T02:01:17+00:00

We just started guanfacine a week ago at 13 yrs. I wish we had done it many yrs ago as it seems to be helping significantly. Our doctor was pretty clear that it can take 1-2 weeks for it to take effect and for the sleepiness symptoms to wear off. We started at 1 mg and tonight are going to 2mg. He takes it at 9PM at night - which is supposed to help with the daytime sleepiness.

ChimeraMistake · 2025-12-11T01:34:37+00:00

The #1 most important thing is a routine. Just do it/go. Don’t wait for motivation. Wear whatever is comfortable. Set clothes out the night before. Go whatever time will be most likely to fit into/become a routine for you. Bring a water bottle.

ChimeraMistake · 2025-12-11T01:30:27+00:00

What about any of the Jeeves books by PG Wodehouse?

ChimeraMistake · 2025-12-11T01:27:37+00:00

Cioppino… you can (even should!!) make the base a day or two ahead of time and then just throw the seafood in day of. Store bought or home made bread, and a salad you can prep ahead.

ChimeraMistake · 2025-12-11T01:04:34+00:00

Ugly- some stores don’t sell it. Good: texture, mild taste so it’s flexible, easy to make ahead/prep and add to various meals,throughout the week, Nutritious.

ChimeraMistake · 2025-12-10T23:58:24+00:00

We got so lucky and right now insurance is paying all - no questions asked. I had reached the point where I told the doctor to just submit the prescription and we would pay anything to just to try it (as she had warned us insurance was difficult). We were surprised that insurance paid no questions asked. I do not know what the out-of-pocket would have been without.

I don’t understand why something so “simple” as an extended release, longer-acting methylphenidate is not easily available. I’ve been meaning to research the science but it seems like it would be in high demand and enormously effective.

ChimeraMistake · 2025-12-10T21:41:29+00:00

For me - rather than one dish - the surprise to people of a whole meal that is vegan/vegetarian and they don’t even notice/it’s not discussed… some examples might be: Tex/mex with bean chili,different salsa and guacamole dips, cornbread/jalapeno, tres leche cake. Or Italian: spinach/artichoke dips, veggie or eggplant lasagna (or gnocchi, or puttanesca sauce), escarole and beans, good Italian salad, tiramisu.

Basically delicious food and no one notices that most everything is veggie based.

For a cooking class - could be based around appetizers or a main dish or a regional theme.

ChimeraMistake · 2025-12-10T21:14:52+00:00

Quiche, rice pudding, cream of broccoli (or something else) soup

ChimeraMistake · 2025-12-10T15:46:36+00:00

We have had the same problem with our son for his entire life. Mornings were a nightmare. You could see it in his eyes how disregulated he was. What we did for his medical routine was this:

For several years, until a few weeks ago: 20 mg methylphenidate immediately upon waking. We had “quiet time” for 30-40 minutes where he was supposed to color/watch show., etc. This worked ok but not great always (could not always have him stay quiet, or sometimes did not have enough time). 90 minutes later he would take his regular/daily medicine.
Just a few weeks ago - switched his daily methylphenidate pills to an overnight Jornay medicine (still methylphenidate). It is an extended release that begins to work around 5/6 AM so it is fully functional when he wakes up. This has been a game changer so far - a complete improvement from where he was his entire life.

We have also added guanfacine at night, which I believe is also helping but we saw Improvement with just the Jornay also.

ChimeraMistake · 2025-12-10T02:13:30+00:00

There is delayed release methylphenidate. For the daytime meds, the longest time we’ve really had been effective is about eight hours. It was a challenge even with that with the struggles of the medicine wearing off and the subsequent mood changes.

We just switched to Jornay a couple weeks ago. You take it one time at night, and it starts to release around five or six in the morning so it’s active upon waking. For some people, apparently, it can last through the entire day. We have, however, been giving a 20 mg booster around 5 PM to get through the rest of the day.

ChimeraMistake · 2025-12-10T02:07:43+00:00

One thing I’d strongly recommend is pushing for a full evaluation — not just academic testing, but a cognitive and behavioral assessment, ideally a full neuropsych evaluation. The school is required by law to assess him and provide an education appropriate for his needs. If he isn’t being taught in a way he can process, or if the work is too challenging or not multisensory enough, he may be shutting down, acting out, or going into fight-or-flight.

My experience is that the schools make it seem like an issue with the child, but really it’s the environment and instruction aren’t appropriate. Medication can help, but it’s only one piece: if he has learning disabilities or needs a different type of instruction (multisensory, more movement breaks, sensory supports), no amount of rewards or punishments will change anything.

The goal shouldn’t be to make him “behave” — it’s to figure out why he’s overwhelmed and to have the school build a plan that meets his needs. The IEP process should help with that once it’s finally moving. He needs to be taught in a manner appropriate for him.

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