I wanted to update everyone on the latest in Lucy's HSP saga. As previously blogged about, Lucy has been going to the clinic for regular blood pressure checks and urine tests to monitor her kidney function. HSP can make its way to the kidneys, in most cases there is no long term damage but it is something that we want to keep our eyes on. Lucy started to have trace blood showing up in her pee around February and, as time passed, the amount of red blood cells in her urine started to increase with each lab test. Her PCP recommended that we see a pediatric nephrologist to review her records and take a look at her kidneys. Easier said than done in rural America!! Of course there is no pediatric nephrologist in our network. :(
** As a side note, this situation reminded me of my previous life when I used to travel to all kinds of hospitals and medical systems. When I was working at a hospital in beautiful Grand Forks, North Dakota, I arrived for an onsite trip and there was a huge party happening in the conference room where we worked. I asked what was going on - was someone retiring? Nope, they were celebrating the fact that they finally hired a dermatologist after a 2 year search. :) Yes, it is hard to find specialists who want to move to the middle of no where to practice! **
The referral coordinator I worked with was great - she was able to find us a fabulous doctor in Marshfield - he was out of network and a 2 hour drive away but I was able to work with my insurance to have everything fall into place. After Lucy's visit to the Marshfield Clinic, she has officially been seen in 5 different medical systems with 4 different electronic health records during her Henoch Schonlein Purpura adventures. Ai yi yi. Good thing that Mama keeps track of all of Lucy's lab values on her phone!
Dan and I drove with Lucy down to Marshfield for her visit with Dr. Haws. Here are Daddy and Lucy snuggling and watching some Paw Patrol before her visit.
When we made it back to the room, we provided an extensive past medical history and talked through Lucy's labs. Lucy also had a urine test while we were there. We saw Dr. Haws - who is pretty much the only pediatric nephrologist for all of northern WI. He was awesome. I wish that we would have seen him months ago. He was so knowledgeable and reassuring. He said that the incidence of HSP is ~112 to 114 in a million!!
Dr. Haws said that he sees blood in the urine of all of his HSP patients. He said blood in the pee was nothing to worry about, we should be concerned only if proteins started to show up or if Lucy's blood pressure got very high. Dr. Haws said that he would expect trace blood to show up in her lab tests for the next 2 years! Fortunately, Lucy has had very low protein levels in her pee so far.
Our biggest questions were about Lucy's ongoing symptoms - if you look closely, you can see that Lucy's rash/vasculitis is still showing on her legs. When you look online, most websites pretty much state that you just need to let HSP run its course and it will be gone in 6 weeks. Well, here we are 4 months after the diagnosis and Lucy still has a weakened immune system (she missed 3 days of school in March due to tummy bugs/fevers) and her body still has rashes/vasculitis especially on her legs. Dan and I find that the rash is most evident after illness or when she gets very hot or very cold.
Dr. Haws said that we should expected to see the rash appear on and off as Lucy grows and her immune system matures. He said that we should not be alarmed if the rash continues to ebb and flow until she is a teenager!! Say what? I was personally hoping just to forget about HSP forever but it looks like we will still have reminders for years to come. Still, we are so grateful that Lucy's symptoms are not serious and that everything she is experiencing within the normal range of kids with this illness. We will continue to monitor Lucy with labs and blood pressure checks and see Dr. Haws for a follow up visit in July. This time we get to go to the Marshfield Clinic in Minocqua which is awesome! It will cut our driving time in half.
Lucy was so good during her appointment, despite the fact that it was at 100 in the afternoon and that she desperately wanted to take a nap instead of spend time with Dr. Haws and chat with his staff. After the visit we treated her to ice cream. :) Here is a pic of our happy camper with her treat.
