My sensitive boy

Ever since Jayden was released from the hospital in April, we've noticed that he is VERY sensitive to the sunlight. He hates for it to touch his skin. I figured it was just him getting used to the change in climate, but now it's getting worse and worse. He RUNS to find shade now. And when the sun touches his skin he immediately starts crying, scratching, and fidgeting really badly. Today we had to run into walmart and he was crying and grabbing at his neck and then tried to stick his head under my shirt. And when we put him in his carseat he cries in pain if the sun is on it. And his car seat is cloth so it cannot burn him. we've tried putting hats on him but he still complains about the back of his neck and his legs and arms. I cannot dress him in long sleeves and pants in the summer temps! He starts summer camp next week and I'm worrid about how he will tolerate it. At school, their playground is shaded. I'm not quite sure about the playground at camp, so I will have to let the camp counselor know. It seems like it's one thing after the other with my poor boy. Because of this, we are considering canceling our annual trip to Disney World in August. There is no way he will be able to handle being in the sun for hours and we would just be asking for him to have seizures. We are going to go in November instead. J has an appt to see his neurologist next week and I plan to bring this up to him b/c at this point I don't know if it is a side effect of the meds or if it's just something that comes with epilepsy. I'm sad to think of him spending his summer indoors.