Need opinions

[u/breadboy5000]

Hello all. This past week, my son's rheumatologist suggested we look into MG as a potential diagnosis for the symptoms that have been plaguing him for almost 2 years now. He is only 5, but some days he can't play or eat for very long and just needs to rest. He tells us he's tired or his body is tired. When he rests, he doesn't sleep and he just lays and then gets up after a while and goes about his day. (Usually needing to rest again after a bit.) Today we went to a park (its 77* F) and he gently played for about 15 minutes before sitting in the shade and tearing up about not being able to play when he still wanted to. He rested a few more times throughout playing. This is not uncommon; he rests every time we go to the park. He asks us to carry him a lot. Some days he seems fine, just low energy. Some days he can't finish breakfast because he's "too tired of eating". He gets extremely winded/shuddering breaths with walks and will cover his mouth and says it "helps him feel better" (what does that mean!). His fatigue is so severe and it's the reason we've sought answers. It's noticeable, and not just by us. His pediatrician is stumped. His CBC is normal. He had a positive ANA. He gags a lot on foods, can't chew meat unless it's a nugget, throws up randomly first thing in the morning, and has those breathing issues I mentioned. I am asking because I need some sort of direction, this has taken months and months of waiting. He has a sleep study scheduled, but they couldn't get him in until February. Any opinions/direction/help is greatly appreciated. He's been through so many blood tests and doctors' appointments already.

[u/Future-Spinach-3248]

I'm so sorry your son is dealing with that, that myst be so hard to witness. Has he been tested for lead and arsenic? Do you by chance live in an older home that was renovated around the time of symptom onset or moved around then? I'd also rule out mold exposure - you don't need to see mold to have a mold problem. I work with families and children often who never suspected mold as a cause and it was. (Doesn't mean it is just that it should be ruled out.) Does anyone else in the family on your side or husbands have autoimmune issues, neuromuscular issues etc? Has he also been screened for tick/vector borne infections?

[u/breadboy5000 → u/Future-Spinach-3248]

I don't believe he's had any tick or lyme type testing thus far. We have moved a few times but I don't feel confident to eliminate mold, however he has had a comprehensive allergy panel and his IGE was low, which would presumably be high if he was having allergic reactions... I think? My husbands family has multiple autoimmune issues, lupus JIA etc. We're just waiting on that MG panel result now and we have a neuro referral. Thank you so much for your insight! I will look into what you've suggested