Thursday, December 1, 2011

HSP = Hurt Sad Person

We were supposed to be having a fun-filled repeat of last year's Thanksgiving fun with my family down in Concan, easily one of the boys' Top Memories of all time. But instead, we've been in the middle of a pretty horrible nightmare for the past three weeks.

It started 22 days ago, when I picked the boys up from school one Wednesday afternoon. Ryan was begging me to take him to the doctor. One appointment later, he tested positive for strep - his first incident since his tonsils were removed fifteen months ago. Three days later, I had to pick Alex up early from a birthday party because he wasn't feeling well. He had a fever of 102.7 and a sore throat. We took him to the after-hours clinic, where he tested negative for strep. But the doctor there decided it was likely a false negative, gave us a prescription for Cephalexin, and sent the results for further testing.

Alex "recovered" pretty quickly, and on Tuesday morning, he showed us two "pimples" on his knee. Carl and I thought they were ant bites of a sort, and we were completely unconcerned. But the next morning, he had around 30-40 of the pimples on his legs. I sent this picture to Carl (who had left for work early) and decided to take him to an early doctor appointment.

Our main doctor was on vacation, so we saw one of the nurse practitioners. Who didn't know what the rash was, so she brought in one of the other doctors. Some debating ensued, but the consensus was that it was some odd bug bite that spreads its venom under the skin and brings other bites. The other possibility was a reaction to his meds, but either way, it wasn't contagious. So he went to school for the rest of Wednesday, and we started taking Benadryl. And I started googling skin rashes like crazy.

Thursday morning, Alex now had several hundred little dots on his skin. So back to the doctor we went, and this doctor decided it was an atypical chicken pox. Apparently, since kids are vaccinated for chicken pox these days, when kids do get it, it doesn't look like the chicken pox of the past. And the fact that his dots didn't itch didn't worry them, either.

So he spent the next few days at home, in quarantine, and despite the fact that his dots continued to spread and worsen and scab and go to all sorts of unpleasant spots, I wasn't too worried, because we knew what it was.

The weekend was especially rough. He was sick and miserable and in a lot of pain. He missed a cool Scout event all about Indians, as well as his last soccer game of the season, and the subsequent end-of-season soccer party. This party was also his last chance to say good-bye to Liam, one of his best friends who was moving to Indiana, adding much insult to Alex's injury. He was very, very upset about things.

And then early Sunday morning, around 2am, he woke up screaming and crying and unable to walk. His feet and arms hurt and were swollen. So I drove him to Dell Children's Hospital. We got pretty fast treatment - telling a hospital you have chicken pox gets you in a private room pretty quickly. Every person we kept seeing - the admittance nurse, the transport person, the ER nurse, all commented it didn't look like chicken pox. They asked Alex to describe his pain level - as if an eight year old can do that - and he said a nine. Considering he couldn't walk due to the pain, I actually thought that was pretty accurate of him.

The first ER doctor we saw didn't know what he had, so she sent the supervisor ER doctor in to see us. She came in, spent about 30 seconds looking at Alex, put her finger to one of his spots and pressed down (eliciting some "OWWW!"s from Alex) and noticed that the redness never left the spots. Another 15 seconds,  and she said he had Henoch- Shonlein Purpura.

To which I responded, "What was that again?" She went on to explain that its a disease, more commonly known as HSP, and that she would run some tests to confirm it, but that she was 99.99% certain.She then threw an awful lot of information out to me in a short period of time, and went to order the tests.

I quickly called Carl (who had stayed home with a sleeping Ryan) and told him the diagnosis. We both started googling HSP, and the second we saw the photos online, we just knew she was right. It all clicked. The pictures that come up  looked exactly like him, in all the different stages we'd been through over the past few days. Neither one of us liked what we were reading or what the doctor was telling us, but it was oddly calming to at least know what was happening to Alex. Having him screaming in pain in the middle of the night, unable to walk, and not having a clue what was wrong with him, is up there as one of the worst moments of my life. Knowing that there was at least one doctor out there who knew what was wrong, and how to treat it, brought such a tremendous source of relief... its indescribable.

Basically, HSP is a form of vasculitis that causes the capillaries inside his body to bleed. Hence, the spots. It only affects the joints, kidneys, and skin, and it is generally from the waist down. It also can bring on arthritis like symptoms, which is why he couldn't make a fist that morning, and couldn't bend his arms or legs. Its very rare, and hard to diagnose initially, which is why our pediatrician's office had such difficulty with it. No one knows what causes it, and there is no cure for it. It just happens, and goes away on its own. Steroids will help bring down the swelling of the joints, and he gets a higher than usual dose of Motrin to help with the pain. It mostly happens in children ages 2-6, and the older you are, the more serious the attack. If it strikes an adult, the chances of recovery are not good. Bed rest is the best treatment

There was a flurry of activity as more doctors and nurses came by, and they did several tests on Alex, and soon they brought him some steroids and pain medication to take. The meds helped tremendously, and pretty soon, he was feeling 1000% better. When all was said and done, the doctor came back in and spent what seemed like forever with us talking and answering questions. His recovery period is 4-6 weeks, and 50% of kids that have HSP have a re-occurrence. The re-occurrence is usually milder than the first case - thank God - but it can lead to kidney problems. 1% of people with HSP develop terminal kidney problems. This was NOT a number I liked to hear, and it was stressed to me that if he developed blood in his urine or had significant abdominal pain, we  needed to come back to the hospital immediately.We were also told to give him his meds 4x a day, but not to wake him.

We eventually went home, and let Alex get back to his iCarly viewing. Alex was soon feeling better, since he had his steroids, and we had a struggle reminding him that he couldn't be up and running around. But we all went to bed feeling good about things, and Alex went to sleep early.

The next morning, he managed to sleep all the way until 4am before he came to us again, crying and screaming, this time about his stomach. Which freaked me out to no end, since the doctor had drummed into me the importance of immediately returning to the hospital if he had severe abdominal pain. But how to determine how severe is severe?

We quickly gave him his pills - it had been eleven hours since he last had some - and Carl wanted us to wait before rushing off. We tried to sit him down on the toilet, to see if that might help, but that action caused him to start screaming, "Ten! I'm at a TEN!" I waited a good fifteen minutes after the medication before I couldn't stand it anymore, and we rushed back to the hospital. This drive was even scarier for me than the last one, and I find it somewhat miraculous that I never let Alex know how terrified I was.

Once again, we were seen quickly, and our nurse happened to mention that we were seeing "the big guy," aka the Chief of Staff. The doctor came in, looked at Alex, and told him he had the most impressive case of HSP he'd ever seen. He then added that it wasn't the most serious, just the most impressive. As if *that* makes me feel any better. My father-in-law had joined us by this time, so I soon excused myself to go have a massive break down outside.

They ran more tests, including an ultrasound, but everything came back as 'normal' as it could be. Alex was starting to feel better, and was even asking for food, so the belief was that the pain was due to the fact he needed his meds. If I wasn't a believer in the power of steroids, I was now. So we went back home late in the morning, with a stop at Sonic so he could get a Breakfast Burrito. And Carl and I gave Alex his meds like clockwork for the next few days, including waking him up at 2am.

We had a visit with our pediatrician the next day, and felt good about where things were going. We even managed a brief 10-15 minute visit with Liam in his packed up house before the movers arrived. With our Thanksgiving plans to travel to my family cancelled, my mom decided to come stay with us for the holiday, to help out, and (I think) to help relieve her own mind about what was happening. Thanksgiving Day was also the day we were supposed to start reducing the amount of steroids Alex gets - from 40 mg per day to 20mg per day. It seemed like he was doing well, and we had a good Thursday. We even took a brief, slow five minute walk after dinner, he seemed that well.

But on Friday he woke up with a huge new outcrop of spots, and an increased pain level. And Saturday morning, it was significantly worse, so I called my doctor's office and took advantage of their new Saturday hours. We talked a lot about the medications, and she agreed that the higher dose of steroids was helping keep the spots and pain down. We wanted to go back to the original dosage with a slower tapering, and we've got it. She also gave him the okay for a return to school, with no physical activity for at least two weeks.

The rest of Saturday and Sunday went well with the higher meds, so on Monday, Alex returned to school part-time. Monday went great. Tuesday, however, he came home with a HUGE outcrop of spots - the biggest gain we've seen yet. I'd say there was well over 500 new ones, and they were starting to creep higher up his back, and almost reach his shoulders on his arms. I was really freaked out until Alex pointed out that someone (who is not authoring this blog post but who shall remain nameless otherwise) had forgotten to give him his meds in the morning.

The meds have been regular the past two days, and the amount of new spots appearing has lessened. Some of the others are fading into bruises, which we've noticed happens with a lot of them. We were supposed to go down to 30 mg today, but we've decided to wait until tomorrow to try and get him through the week at school. We have another appointment tomorrow to have his blood and urine tested, and to talk about the ups and downs and how closely the spots and pain levels are tied to the steroids. I understand that this is supposed to take 4-6 weeks, but I didn't really get the impression he would be having so many new spots erupt all that time.

We're continuing to have our ups and downs, and to make adjustments in our lives. We've gone ahead and cancelled our ski trip to New Mexico we were planning for the first week of the Christmas holidays. Alex took that news very hard, particularly since he is all about continuing with our traditions (even when those traditions are only one year old). I've had several talks with God, reminding him that he's already cheated me once in life with Dad, and given me a bad enough scare when Ryan was born, and that I think this is enough for now. Those talks usually result in a good day for Alex, so I think he's listening. And we're still not sure what will happen with the winter basketball season. The games don't start until after the holidays, but practices started this week and he won't be able to have any practices before the games - if he can even play then. Alex joked about what HSP stands for - since who can pronounce it correctly or even remember the right three words - and decided it was the Hurt Sad Person disease.

On a plus note, his teacher has been wonderful. I was really worried about how this week would go. With the steroids, he has a lot of mood swings - he can be super affectionate and loving, and a few minutes later he will be rude and bossing me around. His teacher is strict - so that rudeness would not go over with her at all. But apparently she's handling it well, and because he can't do physical activity, he's allowed to pick a friend to stay inside with him each day during recess time. Apparently all the kids want to be picked, so he feels like Mr. Popular. He needed this boost.

Alex has been a superstar through all of this. I'm so impressed at how well he handles everything, and how mature he is when we talk with him about things. He's very self-conscious about his spots, and while most are covered by long sleeves and long pants, there are probably 100 that show on his hands. So we practiced what he would say to someone who asks him about it. (This also explains the few pictures on the blog because I was only granted permission to take my photos if I didn't share them with anyone but the doctors.) He's loving his long baths, and I've let him use my bathtub and even brought out my reading tray to encourage him to soak longer.

That's my son. :)

We're grateful to leave November 2011 behind us. Welcome, December.

1 comment:

  1. My goodness, Annalynn. I'd seen this on facebook but reading the entire story makes me realize how scary this must be for you and Carl. You have been and will continue to be in my thoughts and prayers. I'm sure your talks with God are helping things more than we can imagine. Hang in there and please let us know if there's anything we can do to help. Love, erica



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