My daughter is 12 and diagnosed with ASD and Chronic Pain. recently after private consultation in London HMS, Chronic Infection, POTs and Epstein Barr Virus.
She has been under investigation for Marfans, heart a worry but no cardio appt yet, however, rheumy have move it forward 2 months after POTs email sent to them today.
Would like to meet people that have some good positive ideas about exercise regimes, diet (we're on gluten free) making a big difference to the pain. Anyone on supplements, we are on B12, arthred and a few more...
What is the best exercise to give.... bearing in mind daughter cannot converse with me due to ASD, but I was hoping that you could advocate for my daughter, how she's feeling if you have similar diagnosis....
Currently she's bed ridden with a sickness bug, high temp but at least drinking fluids and having jelly. Off school for over 2 years now, statement we have just got after major battle. Much less crashing on the GF diet, scores 9 on the scale, but can't bite her toe nails anymore due to fixation of knees, will not straighten, had them injected and very bad reaction, high temps and more pain. Had MRI all normal. Has strongly pos ANA.
Would be very interested to meet people on here with similar diagnosis.... and any information how I can help to build her up when she's having a good day.
I am dealing with a non communicative child, so with all the will in the world, I don't know how much she's suffering or what helps and what doesn't, would really appreciate advice.