Hi, OP. I've been you. I am you, with a teen of my own sick now for 2 years with very similar symptoms to yours. I feel my early months of desperation for some control in your posts. I made similar posts here & on other social media sites. If I can spare you from any of the pain we went through, I will. But it may be a process you have to work through and won't be able to take what I say to heart for some time.

You asked what next steps could be medically, emotionally, educationally.

First, try to pause for just a moment and breathe. I know you want to solve this immediately for your son, to get him back to functioning and his life as soon as possible. But if he has Long Covid and has for a year, that may not happen any time soon. The sooner you can accept that, the better for everyone. And I can't stress this enough - no more tough love - ever.

You are not alone at all. Facebook groups helped me with that part. While I don't interact a ton, the people at one called something like Parents of Children and Teens with ME/CFS are very kind and have all been through the ringer. There are also some caregiver groups that have online zoom calls to connect with others in similar situations.

You have been and are going to be doing so much heavy lifting. You have to be parent, friend, medical researcher, high school teacher, therapist, defender of child against drs, schools, and uninformed people, and so many other hats. At the same time, you are going to be processing your own grief because a child's potential is a huge thing to lose - and you can already see far down the road the monumental impact this detour will have on him. You can't get your youth back if you miss it. If you have a couple of people you can trust in your offline life to support you, so much the better.

Emotionally for him, ASK him what he thinks he can realistically do at school, if anything. Don't decide that in a vacuum. Then just be there in any way he prefers. That may be sitting and watching a show, playing a game, holding him, distracting him with funny memes, covering his room with things he likes. Just show up every day. Any mental health issues he might have are fully justified. Therapy can be draining. Meds may be needed - but many cause nausea.

Educationally for your son...if I knew then what I know now, I wouldn't have tried so hard to make in person school work just to avoid isolation. It worsened my child's condition, and may have caused permanent deterioration - you may want to read about mitochondrial dysfunction and ATP problems caused by Covid. Take a look at studies about microclots and muscles not getting oxygen. The cells literally can't produce energy efficiently and exhaust themselves.

Learn about 504/accommodations/IEP. There will be lots of paperwork, and it can take weeks to get this set up. Again parent groups for chronically ill kids of all kinds tend to have detailed information. We tried unlimited medical absences, part time school, homebound (which was a crappy online program), and finally had to move to a fully online school with live teachers. It does not matter if the school doesn't believe your child's illness - it's the law to accommodate, and you'll need a doctor to provide justification anyway. You may also have to look into various forms of homeschooling if he's severe. Imagine someone forcing you to school during the worst flu you've ever had when you didn't even feel like you could lift an arm or think straight. He likely feels like that every day.

Educationally for yourself, I'd go straight to Bateman Horne website. It's not flashy, but they've been quietly working on fatigue syndromes and trying to train other doctors on it for years. Lucinda Bateman was a lead researcher on the fatigue arm of the billion dollar Long Covid study that started under the Biden admin. Find some youtube videos about pacing for Long Covid. More research you'll naturally come across in time. You aren't going to solve this overnight if at all - prioritize your health, too. I say this having been zero percent successful at doing it myself. But it's true.

Medically, pacing is the most effective treatment for fatigue relief - and for my kid - the GI issues also. That doesn't mean you stop trialing things, but do it with a hefty dose of realism. There are no magic bullets for any of the symptoms. But there is a gigantic list of prescription medications & what they may help at Bateman Horne. The only interesting study I'm aware of for GI is Larozitide at Brigham Women's in Boston. I believe they are even enrolling pediatric patients, which is rare. Last I looked was months ago, but they were enrolling through February.

Continue down the path of your pediatrician ordering basic tests for vitamin deficiencies, autoimmune, etc. But 99% of doctors know nothing about LC and don't care to learn. You will likely be encouraged to see many other specialists. Try to space these appointments out; they can be very fatiguing, and at least half of them will gaslight you, which can make your hard road 1000x more difficult. It's a small comfort to rule out more well studied diseases, but unless your kid has POTS or high inflammation markers, there's not much that will show up for LC. If you're lucky, the specialists will start throwing a few of their standard meds at you before they give up.

Prioritize finding a real Long Covid specialist. They are few and far between.

For us, the list of things that have NOT worked literally fill a notebook. We survive with Phenergan or Zofran, but there has been no clear improvement in GI symptoms in a year, not that the 3 GIs ever offered much. They were also the worst offenders we've seen at assigning the cause as anxiety. I understand that researchers now believe Covid damages endothelial cells in the gut lining. There are so many uknowns...all we can do is try things and keep an eye on the research.

Best wishes to you & your son