We had 2 appointments today at Shriner's. MM had a speech appointment.
C was fitted with her new prosthesis.
Plus it is VBS week. Crazy, crazy times. I am also researching lupus for C. 3 years ago we thought she had HSP- Henoch-Schonlein purpura.
It started with C saying her legs hurt when we were at a birthday party. 15 minutes later. she had spots all over her legs. I thought she was getting chicken pox.
We immediately left and drove home. By the time we got there, her legs were swollen and she looked like she had meningococcal disease and she could not walk. I took her to the emergency room and they immediately sent us by ambulance to the local children's specialty hospital. We were there for 4 days. They finally diagnosed her with HSP, which is an auto-immune disease.
But it is only supposed to last for a while then go away. It is not going away. She will go months without having an outbreak, then boom, another issue. High fevers, joint swelling, canker sores, rashes, stomach pain, head pounding and more. I am so tired of seeing her in pain. It has change her and I don't like that. When I tell the kids her HSP is acting up, they immediately just put this sad face on and we pray. We know how painful it is for her. But I just don't think it is HSP.
Maybe it started as that, but now, I am not so sure. I have heard auto-immune disease can piggy back each other and I am wondering if that's what is happening. I have a call into the specialist-again. I would love to hear from other parents with children with HSP or lupus.
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