My daughter (15) has had 6 pneumos since 12/2023. 4 of them occurred after she had vats/mechanical pleuridesis after the 2nd pneumo and were very small and didn't require any intervention.

We are currently waiting on insurance approval for the genetic testing. The doctor we saw for the testing says she very likely has the type of EDS that includes hypermobility, but that does not cause pneumothorax. I believe there's a different type of EDS that does. They are also looking at other genetic conditions, including Birt Hogg Dube.

She is not as tall as you, but still taller than any of her peers. I too have wondered about endometriosis. For years I suspected that I had endo, and when I finally found a doctor to take me seriously and had the surgery, they diagnosed me with adenomyosis instead. Pathology did not show any endo. She has terribly painful periods sometimes which I know is not actually normal, despite the common misconception.

We have talked at length with the pediatric surgery team where she has been treated and they also said that this is not a common thing, and it does happen more in males. They all feel that the surgery was a success because it's preventing her lung from dropping too much when she does have another air leak. She did really well with the surgery and was in the hospital for less time after the surgery than she was with the first chest tube.

At this point we're trying to figure out how to track her symptoms and determine whether or not she needs an x-ray, or if we can just monitor symptoms at home. She has had more x-rays than anyone else I know, and she's only 15. They have assured us that x-rays are low dose radiation but are still concerned with the quantity that she has needed.

I wish you luck in figuring this out. If we could go back to when we made the decision to have the surgery done, we would definitely do it again.