u/KLJMI_October

I’m looking for some advice on my 7, almost 8, year old son. I’m just going to start at the very beginning - when he was about 3, he started having MAJOR meltdowns. At first, we thought nothing of it because we thought it was just normal behavior for a 3 year old but they continued clear until well, he still has them pretty often even now at 7 years old. They would last sometimes up to a few hours. They used to be soooo bad. We suspected & honestly I still suspect that he may have high functioning autism due to other things also. But no one will diagnose him because he’s talkative and makes “good eye contact”. But I, his mom, am diagnosed high functioning and honestly I have masked so well my entire life that I didn’t even get properly diagnosed until I was 30 years old. They told me when I was 13 that it was anxiety and depression. & now that is what they are also telling me about my son, he’s just anxious.😬 Other than behavioral problems, things had been pretty quiet as far as his health went up until October 2025, literally right after he turned 7 years old. He was diagnosed then with Kohler’s disease in one foot. November 2025, they did X-rays of his hands because he had hurt his wrist, & although no injury - they did see that he was missing a bone in his wrists. He was put in a cast for his foot to help it to heal until December 2025 & then Not much else was said about his foot or his wrists. His first orthopedist did send us a referral to rheumatology because he started having some joint pains all while this was going on. January 2026, we saw rheumatology, they did X-rays of his entire body and said everything looked fine or at least the same as before. They did not do any bloodwork for rheumatologic diseases or anything, they just wanted him to try a medication and see if it helps. He would not take the liquid of the medication or the pill form so when we followed up with them in March 2026, they said they didn’t think there was anything going on from the rheumatology standpoint. By this point, he had started gaining weight increasingly fast, 6-8 lbs in about 8 weeks I think is what we had figured up, he was chugging drinks (still does this) & was having small accidents here and there that was unusual because he had been fully potty trained since 4 years old. So the rheumatologist ordered bloodwork to check his A1C & Thyroid Levels, but everything came back normal. So then in April, he hurt his hand at school, I took him to our local orthopedist because it was swollen and hurting him. They did not see any injury but they noticed that his bone in his wrist that was missing last November, still hasn’t developed. So we were referred to a new orthopedist at a children’s hospital. We were seen by them the next day. They did some more X-rays of his foot and both wrists and tell us that his scaphoid bone in both wrists I’m pretty sure have not formed yet, therefore making his hands be that of a 5 year olds instead of a 7 year old. They referred us out to endocrinology but we can’t get in to see them until September 2026. Fast forward to now, May 2026, & he has started having what I can only describe as body tics or something, he says he feels like he just can’t get comfortable, & his body just makes jerking movements even when he is relaxed & watching tv. It’s almost like he is physically irritable, if that makes sense at all. He has also started grinding his teeth in the last 2-3 weeks when he’s sleeping. He has also been stimming a lot, like tapping on things excessively and won’t stop even when we ask him to. He also has been having issues with super red cheeks and almost like an acne/rash type bumps around his nose even though he doesn’t have a runny nose. I called his psychiatrist today, 5/11, and got him an appointment with the nurse there for 5/19. I’m just not sure where to go from here because I don’t know if it’s a behavioral problem or a physical problem. I also want to mention that when I see him interact with kids his age, I do notice he acts more like a “little kid” than they do sometimes. I have so much concern for what is going on with my child but the closest children’s hospital to us is a 45 minute to 1 hour drive, & even they (there are 2 different ones and we’ve been to both already) are questionable when it comes to certain things. A lot of hospitals (Children’s included) near us tend to blow things off more often than not and I just don’t know what to do. Anyone who has maybe had similar problems with their children? Can you offer any advice? I’m just stuck, & I don’t know how else to advocate for him to get the help he needs.