The Wonderful World of HSP

Last week we learned a new word – Henoch Schonlein Purpura – aka HSP. (OK – so that’s 3 words.)

Here’s what happened:

Tuesday: 5AM Jasmine wakes up crying that her hands really, really itch. When we turned on the light, her hands were red and covered with itchy bumps. There were also some on her feet. I thought they were hives. Later that morning, I called the nurse at the pediatrican’s office. They said that it did sound like an allergic reaction, but could possibly be hand foot & mouth disease. Either way, I should treat with benedryl. By dinner time, she was covered with the rash. I called the nurse again who said it’s definitely not hand foot & mouth, but the benedryl may take several doses to start to correct the rash. Keep giving the benedryl and if it’s not improving by the morning they would want to see her in the office. That night at bedtime, she felt warm.

Wednesday: The rash was much, much worse and there was a definite fever. So this time, I called the doctor’s office and told them we were coming in today. When we got there, her fever was 100.4 – and then spiked to 104 at the doctors office. Three of the pediatricians on staff looked at her and sent us to the ER at – our choice – CHOP or DuPont. We chose DuPont. The whole thing was incredibly scary since I wondered why they weren’t sending us to the local hospital. The good news is that we really are blessed to have two of the best children’s hospitals in the country less than an hour’s drive away.

I think we made the right choice. We got to DuPont’s ER and they took her right in (our doctor had called ahead for us). So that meant she had more (men) doctors, plus blood tests (horrible)! Once again, they didn’t know what the problem was. They suggested HSP, serum sickness, rocky mountain spotted fever (or other tick-borne illnesses), viral issues, etc. The problem was that her symptoms didn’t follow the regular patterns of any of these illnesses.

Eventually they decided to admit her. I went home to nurse the baby and Rob stayed there. (Thank goodness for my parents who came down so I could take Jasmine to the doctors and ended up staying to take care of the baby). My parents stayed the night, and then took the baby with them to their house in the morning while I went back to the hospital.

Thursday: The good news is that she had a private room. The bad news was the reason for the private room. Since didn’t know what the problem was, they had her in isolation in case it was contagious. When I got there, the overnight doctor had put her on “droplet protection” which meant that anyone entering the room was supposed to wear a gown and mask. The regular (morning) doctor did not see the necessity of that – in fact he assured me that she is NOT contagious, but the sign stayed on the door. Consequently, the more experienced doctors and nurses walked right in, but the younger ones (as well as meal service people, etc.) came in looking like spacemen. (Ugh!). Housekeeping refused to come in at all!

Thursday was Infectious Disease Day. We had visits from four different infectious disease doctors. They agreed that the rash looked like HSP or rocky mountain spotted fever, but she did not have the other symptoms of either of these diseases. Thursday night, once Rob got back to the hospital from work, I went home to grab some clothes and then headed to my parents house to crash there with Robbie.

Thursday night was a bad night. Her feet started itching uncontrollably. The child writhed and screamed for 5 hours and nothing helped. I think that the night staff was the problem. They tried a number of different things – including some topical ointments that our doctor told us the following day would not work anyway, since the issue was internal. Eventually, the nurses just left Rob to deal with her on his own since there was nothing they could do. (Not good to do that to a father who hasn’t slept in two days!!)

Friday: Rheumatology Day! By the time I got to the hospital Friday morning, she seemed back to her old self. Unfortunately, the itching happened again – and it really was horrible. Anyone walking in would have thought she was having some kind of a seizure. The good news is that when this happened, our doctor was standing right outside the door doing rounds. So, he saw what was going on and immediately ordered her a high dose of benedryl. Once that came, it took one nurse plus myself to hold her down while another nurse gave her the medicine. Within 20 minutes, she was much better. The benedryl also knocked her out. This is when I learned that a child in a benedryl-induced sleep, if awakened will be extremely agitated. We learned this when the first rheumatologist arrived. She was wonderful, but Jasmine literally woke up kicking and screaming. The doctor only wanted to look at the rash and listen to her heart and lungs. She got kicked – I got bitten. Apparently, though, this is normal and caused by the medicine. I still felt sorry for the doctor. What followed was a major temper tantrum – because she did not want to be there – she wanted to go home, etc. I can’t say I blamed her.

The whole thing was horrible, and I was beyond my breaking point. I’m so thankful for our head nurse who was ready with a hug and a listening ear. She even arranged for me to have a breast pump so that I could pump for Robbie while I was at the hospital.

Several hours later, she went back to sleep and the head rheumatologist arrived. She was also wonderful, and I felt like we were finally getting some answers. They still didn’t know what the problem was, but – the worst case scenario was rocky mountain spotted fever. The test for that takes several weeks to come back from the lab, and you can’t wait that long to treat, so, although no one really thinks that’s the problem, they were putting her on antibiotics just in case (because the risk of not treating would be long term issues). They really think it’s an atypical version of HSP which is a vascular issue where the blood vessels contract and cause the rash and bruising. HSP usually goes along with joint pain and severe stomach cramps (because the blood vessels are contracting internally as well). Jasmine did not have the joint or stomach pains, but the rash seemed to be following the HSP pattern. The doctor really thought it was a severe reaction to a virus. Either way, if left alone it would get better on its own, but would take longer and Jasmine would suffer more. So, she would be put on a decreasing dose of steroids to help move the improvement along and also help to control the itching. However, with the flare-ups from the night before and the morning, they wanted to watch her for another night.

Saturday: After seeing our doctor, another infectious disease doctor and the head rheumatologist, they decided to let us go home!!! WOO HOO!!! Not a minute too soon, either. We had another stand-off over the fact that she didn’t like the hospital food and didn’t want to order her lunch – which she told the rheumatologist (“I hate your food”) and then made up a little “I hate your food song” which she sang throughout her examination. I think that was probably the steroids starting to kick in.

Jasmine was so happy to come home. We left with an official diagnosis of “probable HSP” and antibiotics and steroids medicines. The rash will be there for a few more weeks (up to 12, but probably closer to 4), and she’ll need to have regular blood pressure and urinalysis with her pediatrician – tapering off after 3 months.

All in all, DuPont was wonderful! I can’t say enough good things about the hospital and our team of doctors. They were all so caring and so good with children. In the end, I’m glad I didn’t take her to the ER prior to the pediatrician visit, since we would have ended up at the local hospital, and she would not have had nearly the quality of care or the number of experienced doctors and specialists trying to heal her.

And I’m so thankful for the many, many prayers that went out for our family.  I know they helped not only Jasmine but the emotional state of the rest of the family as well.

I’m just so glad that our whole family is home together again and that she is on the mend!!!