Lupus symptom???

We had our first snow day of the season. My girls have been in and out all day playing in it. Caitlin is at her friend's house and her mom called me and was really concerned about Caitlin because her cheeks looked really odd...she even sent me pics. I am going to try to attach them. I've seen this many times before, but never thought to take a picture. And only Caitlin gets these cheeks after really hot weather or cold weather, noone else in my family does.

It's really hard to say, Pauline. The malar rash can look different on people. Usually, it's described as going over the nose as well as on the cheeks, hence, the 'butterfly'. However, I've seen pictures and it can look like a raised rash, a flat rash, etc. I'd show her doctor the pictures and see what she says. I've never had it.

Thanks Sandi...I will save this one onto my phone and show the rheumatologist when we go at the end of the month just to be sure. It was on her nose as well, but her friend's mom did not take a picture of it. She did have a white circle around the rosy cheeks so it didn't look exactly like a butterfly, but pretty close. Just not sure if it can be called a malar rash because it is from the cold air. After she was inside for a while, it went away.

I have just posted about a new diagnosis my son has received. ALPs - Autoimmune Lymphoproliferative Syndrome. It presents with symptoms that are ITP-like as well as 'Lupus- like'. Ie. low platelets and rashes ...

It is currently classified as a very rare disorder but that in large part is due to the fact that it is a newly found genetic disorder and very limited testing has been done on people. In our Children's Hospital they have only recently started testing children with ITP for this genetic disorder. Your hematologist might not have heard about it which is why I will give you the link here to the organization (NIAID - The National Institute of Allergy and Infectious Disease) that has discovered ALPS so that you may become as informed as possible from the best source. As well you might wish to read my post.

www.niaid.nih.gov/topics/alps/Pages/default.aspx

Caitlin's first hematologist already ran tests on her to rule out ALPS as well as CVID about 2 years ago. I remember him saying that the tests for ALPS were interpreted as normal in the labs, but that she had some cells that were indicative of this disorder. Nothing really came out of it though and I don't think they ever reran the tests.

But, I'm curious...what symptoms other than the low platelets led your hematologists to run the tests? At one time, Caitlin did have some trouble with swollen lymph nodes, but I think it was chalked down to illness (even though she wasn't really sick at the time) because her wbc's were really low at that time too. She's never really had any other trouble and she's had two chest x-rays that would catch any lymph nodes she has. However, I have had problems with swollen lymph nodes showing up on my chest x-rays from time to time but each time the dr reruns the scan, it isn't there. Also, what kind of dr would you see for ALPS? Is there any treatment for it? Caitlin currently sees only a hematologist and a rheumatologist and from time to time, she sees a pain specialist for her headaches.

We had a member years ago who had ALPS. Her son was being monitored for it also. I don't recall too many people having the diagnosis but it does come up once in a while.