Over the course of the past couple of months we have noticed a few changes in Abby that require further investigation. We weren't hasty in rushing her to a doctor since she has changes all the time that generally remit within time (like the ankle rolling). We usually wait out anything new (that isn't serious) and if it doesn't remit within a couple of months we follow up with one of her doctors.
The symptoms we are watching right now are:
1. Ankle and wrist tingling and pain. We have some suspicions about growing pains but it seems weird that she would have them in the wrists and ankles at the same exact time. If it keeps up we're going to start with an orthopedist and see what they think.
2. Her heart. We don't have anything medical to base it on at this point but in all of her appointments and specialists and tests she has never had a heart workup. She has developed a small (non-asthma) cough which was the first sign. You couple that with her being tired all the time and you have enough to warrant some investigation. Because of her RS things like not keeping up with other kids, tiring fast, sleeping more than usual, etc. can get pushed under the rug bc of the condition. It's why as a parent you have to be a detective all the time and make sure nothing slips by. It is very likely nothing but certainly something you don't want to miss.
I'll post as we know more.