Another clue??

I've been doing some research on Angelmans (shocker, I know) this week and put something together that I found interesting. One symptom that can go along with this syndrome is "sensitivity to heat" and my brain dismissed that immediately as a sensitivity to hot water for whatever reason and I thought, "nope, Elle doesn't have that one", if anything, she seems to be more tolerant to hot water then most kids. She seems less sensitive to all pain to be honest and always has.

Yesterday she took a late nap and it was a kind of chilly day and after she was sleeping I bundled her up real good with her big soft blanket cause it just seemed like a cozy thing to do. About 45 minutes later she woke up crying really, really hard and was really upset. I went up there and her little body felt very warm and she was inconsolable. I turned on Sesame Street and held her in my lap. After about 3-5 minutes she calmed down and was fine. My wheels started turning and I started thinking about other times in the past when this has happened and I had actually thought to myself, "she really does not like to be hot" and it wakes her up sometimes, and she is really upset and I have put it together in my mind a few times that the reason for her fussing is that she was too hot. I didn't know why or think much about the fact that it upset her so much.

So, when I remembered reading about sensitivity to heat, that's when I realized it didn't say anything about water, just heat. So I further googled and found out some interesting things. Some kids with Angelman's have a sensitivity to being hot and from research they have done, they have discovered that it doesn't have anything to do with core temperature or mess with it, they sweat properly, so they can cool their own bodies down like any other person, it seems to be connected with the nerve endings of the skin. Angelman's has many symptoms relating to neurological problems, so they think that this is related, and it is just a weird sensation thing to the skin surface.

Upon further contemplation, I wonder if this is why she has never cared for blankets on her legs, wasn't that enthused about being swaddled back in the day, it may explain some of the middle of the night wake ups when she wakes up very upset and I don't know why (this really isn't often, but out of character to her mild ways). I am a little nervous as to what this may mean for summer time and park/zoo visits and the like, but I didn't notice anything out of doors last year, so that's encouraging. It may not be a huge problem. I wonder if even being hot outside, natural cooling works fine, as opposed to being wrapped up in blankets and not being able to break free. Who knows, but this is definitely something to watch and keep in mind for the present and future, especially because I am relatively sure it actually causes her pain. One of the many adventures that await us, I'm sure!

Elles cooling her heels about 3 days old.