April 5th, 2012 - Day 5

A rough day overall. Lots of swelling in his feet and knees. The mornings are always rough and then as he gets moving a little bit he is able to walk. By 3 or 4 pm the pain and swelling is back and he is unable to walk. I gave Isaac ibuprofen as needed. Usually once a day in the afternoon when the swelling would get worse, but sometimes twice a day. During these weeks Isaac often awoke at night.  He wasn't necessarily in pain, just restless. We usually took him to the bathroom and rubbed his back until he fell back asleep. I tried to avoid giving him more meds if possible.
Advice: Give your child pain meds as they need them (and in accordance with dosage guidelines). Don't stick to a schedule. Some days will be worse and they will need more. Some days are better and they may not need any at all.

I spent a good portion of the morning calling pediatric urologists, rheumatologists, and immunologists. I find that the majority had at least heard of HSP but NONE of them had ever treated a patient with the disease. Because I live in an area where two amazing medical hospitals are located I went ahead and called to see how far out they were scheduling appointments...6-8 weeks and that was with a referral! But the truth was, I knew that no one could help my son unless things started to take a turn for the worse. I also didn't want to take an appointment from a child who could truly benefit. On my side though was a wonderful neighbor who called in a favor and got us in touch with a top doc at one of these hospitals. The doc emailed me and told me to hang tight. If things did get worse he would get us in immediately. I was so thankful for some good news! But of course I prayed I would never meet the man.

In the photos above and below you can see the swelling in his foot and ankle and the purpura.

 His poor little knee was so swollen.

On this day his right foot was worse than the left and his left knee was worse than the right.