September 8, 2009 10:37 AM. From DONALYN (LANE) SHOCK: Liz, one of the first signs was the break out on her head back in May or June. Remember at the Family reunion? Haley took her to a Dr. and he said it was Cradle Cap and gave her medicine. But, it never cleared up. I think Haley took her in a secound time but you will need to double check that.
Anyway the doctors at Primary Children's Hospital said that would have been one of the first signs of this LCH. Travis told me last night that there are only about 50 cases of this in the US. It is so rare, that is why doctors miss it. When Travis and Haley can, I would like to see them put something together with all the symptoms. We can email the information around to everyone to help bring more awareness. Also, to help make the doctors more aware of it. If the doctors could have caught this earlier her case could be much better. It is just so new so they don't know.
Thanks for doing the blog so people can keep up on everything. Travis had me bring the kids up there so Him and Haley could come outside and see them. It was good for the kids to see them and be able to ask questions. They had a really good visit. I may have a few pictures that I can forward you.