Waverly & I spent most of the day with her doctors. We met with her geneticist and her pain/palliative care doctor. We have been desperate to discuss Waverly's crying episodes that seem to be a response to some kind of pain. After a thorough exam and lab work, we are all confident we ruled out many causes. The pain could be hip and joint related, since we know she has issues already in those areas. She is also having circulation issues with her feet, resulting in swelling. That could also be a factor. After many hours, we all agree she is in pain and we need to address it. She has been on a low dose pain medication for the past few months and we have seen some benefit. They have decided to add an additional dose in the afternoon, when the crying seems to begin. They are also going to give us an additional medication that we can use as needed.
I have been frustrated these past few weeks over the inability to get her doctors to understand the situation. I left her appointments finally feeling like they get it. There is absolutely no reason she should be crying from pain. Our common goal is keeping her happy and comfortable in the safest way possible. Success!!!
I have watched Waverly lose so much because of Sanfilippo Syndrome. I refuse to allow it to take my happy little girl's warm personality from us as well.