We just got back from a dietician and I can really feel for you, your problems are very similar to ours!
I wasn't worried to begin with, he had an extreme reaction to his first big growth spurt. He slept for 20 hours a day for 2 weeks and then bounced back. We checked with the doc and she said it does happen even with normal kids and not to be too worried about it.
We had this too, and thought it would pass, but when it didn't we started down the road appointments. Peter hadn't been formally dxed with HMS (just got the EDS3 though last week finally) and also has Aspergers so we were always balancing the anxiety of appointments with the expected outcome, so we left it at first. But after a year when the fatigue just didn't go away, we started seeing doctors.
So life went on for a couple of months and then wham another growth spurt, another 2 weeks off school. (thankfully CM is doing really well at school, so missing a few weeks wasn't such a concern, the weeks he missed he quickly caught up on).
Luckily we home educate but it is clear that they are on the look out for those kids that are struggling with school. It can be hard to tease out the difference between not wanting to go to school and not having the energy or having too much pain, but we know our children best.
There seems to be no sign of him getting better, he is sleeping heavily again and I'm not sure if that could be the painkillers or another growth spurt.
Peter has been tired and sleeping a lot now for nearly two years. He refuses to take painkillers. I think that is where the autism affects things, he doesn't think he is in pain but I can tell he is by his behaviour. We are now having physio to try to strengthen his muscles so that he is in less pain, which we hope then will allow him to take more exercise and then he will eat more, feel happier and so on.
It is as if his HMS has morphed into Chronic Fatigue/ME. And yet he doesn't tick all the boxes for that. The paed has said in her letter that she feels that there is a multifactorial element and the fatigue isn't down to just one thing, so can't be treated in a traditional way.
My partner asked me if I thought he was trying to pull a quick one. It was a fair question, we've only been together a couple of years so he really doesn't know CM well. But, I have to confess I had thought the same question and feel a little guilty. If he was doing badly at school or having issues with his peers, then it would be a question I would look at more carefully. There was one time where I thought he was trying to pull a quick one, so I forced him to go to school. He burst into tears as we were driving there and I knew he wasn't faking the pain he was in.
Welcome to the Guilt Club! Many mothers belong!
I have questioned Peter too, especially around the time we got the wheelchair for him. Was I making it look like he was worse than he really was? Was he making it all up because he was lazy? But then we realise that yes, they really are in that much pain or are that tired. I was so relieved in a weird sort of way when Peter fell asleep at the table during a robotics meeting in front of all the other mums! I felt that I was vindicated in my believe that there was something not right about my son!
Physically he has gone from an averagely plump boy to a tall rake thin teenager. He looks almost anorexic but I know he is eating, but he just isn't putting on any weight.
Have you measured how many calories he is actually taking in? I did that and was shocked that even though I though Peter was eating he was only getting about half the calories that he should have been taking in. He has a self restricted diet because of the autism, so today the dietician has said that he needs to start taking a supplement as his weight has dropped on the centile chart. She said that if kids stay on the same centile then she isn't worried, but if their position on the chart drops then it is time to get more calories in. And more calories means more energy for them to help fight the fatigue.
I wish there was some way I could wave a magic wand and make all the pain and exhaustion go away.
Oh yes please. It hurts us to see our children hurting and to feel helpless.
I am going to the doctors again with CM, this time I think I should push for him to see a specialist of some sort.
I don't know if this has anything to do with the HMS, hence why I am writing to you all here, to see if anyone else has had the same experience with their teenagers.
Yes, our paed seemed to think it was all related but it was a discussion with the head of paed physio in our county that gave me hope. She said in her experience these kids do grow out of it. It just seems a matter of keeping them going, keeping their calorie (and calcium) intake good, getting them to exercise to strengthen and sometimes lengthen the muscles that are affected with the growth spurts, and keeping their spirits up.
And I am reminded of a boy that I had a crush on when I was about 13. He was 16 and was a maintenance boy at the summer camp I was working at. He had been a strong worker the year before, but that summer he slept all summer. I am not joking! He was tall, skinny, and probably hypermobile although I can't be sure as it was many years ago. They let him sleep his way though the summer and the next year he was fine again.
I am finding it hard seeing my son suffer like this, and I feel so helpless.
I have no easy answers, but you are not alone, and it helps to hear from others who are in a similar position. So thank you for sharing with us!