Growing Up and Going Strong!

It has been two years since my last update on William's condition. This is actually a good thing because it means there is not much to report. But there are some questions we have and things we wonder about that I thought I would post here. Maybe it will help others who are searching for answers.

William is a healthy 11 year old boy! Hallelujah! When I read of others who are going through that stressful uncertainty of a diagnosis with HSP, I realize how blessed we are to have come through the storm. If you are reading this because you have just learned of this condition, please know that there is hope. Searching the internet you will find stories from the worse cases, the best cases, and everything in between. I hope this blog brings you hope to know that this really is just a storm that will pass and most likely there will be a rainbow when it is over.

Here are a few things we still have questions about. Could these be connected to HSP? Could these be connected to a general autoimmune condition?

• Gastrointestinal sensitivity - William has a sensitive stomach. We have questioned lactose intolerance as his father had that sensitivity as a child. We have considered lifestyle changes like gluten-free foods, but lifestyle changes are difficult. Perhaps we will get there in the future.
• Allergies - Every Spring, William has allergic reactions to a variety of things in the environment. Bug bites have sent him to the doctor for antibiotics. He gets rashes, not the vasculitis from HSP, but skin rashes from grass or other environmental influence.
• Knee joint sensitivity - William tends to have aches in his knee joints from time to time. It reminds me of my grandpa who could tell a change in weather by the way his knees felt. He also has very loud popping knees! Every time he squats to play, his knees pop loudly. It seems unusual for a young child.

Spring 2012

William has enjoyed life since his HSP scare. This past spring he had a slight recurrence and we are guessing it is due to allergies. Springtime always brings the worst of his allergies around here. His symptoms were stomach cramps and fatigue. His joints would hurt, but did not swell as they had before. We have noticed that he has a protruding belly. Pediatrician does not seem to think there is a problem since all his urine and BP comes out alright. We may seek a specialist at some point, but for now William is content with the way things are now. He's not really fond of doctors or hospitals!

5 Months Clear of HSP



William has been healthy and free of any HSP symptoms for 5 months now! We are beginning to believe that it is gone for good.

The fall months usually bring allergies for Will. He takes an over-the-counter allergy medicine daily, but we usually have to take him in to the doctor for something related to allergies each year. In the past he had hives or a sinus infection due to the allergy. This year he developed a large welt on his stomach. It didn't really look like hives and we immediately thought it was HSP. Luckily, the doctor knew right away that is was not related. He had an infection due to a bug bite. He had to get an antibiotic shot at the doctor's office and was sent home to sleep due to a large dose of Benadryl. After a round of antibiotics for 10 days, he was all better!

That experience just reminded us of how cautiously we look at his health now. I suppose HSP will always be in the back of our minds. There is peace in knowing that a reoccurence of HSP is usually less severe than the time before. We survived the first round, so I think we can manage whatever else comes along.

The Peace After the Storm

Will went in for his follow up appointment yesterday. He had been off the meds for 4 days when he saw the doc. No swelling or pain for over a week. The results of urine test came back normal. Doctor said "I think we are at the end of it." She mentioned that she hadn't seen HSP in years and now in the last 2 months she had 2 patients with it. She's thinking there must have been some virus this spring that caused it. The other family also does not have a definitive trigger for getting HSP either. We can speculate, but don't know for sure. The good news is that both her HSP patients did not suffer any of the complications or more serious symptoms associated with this condition. We will need to see the doctor in 2 months for another follow up.

So, now we can breathe a real sigh of relief! Thank God for taking care of us and sending angels to watch over us. Our eyes have been opened to see His love and strengthen our faith. All part of his plan, I'm sure! Nothing is ever by accident!

So, I'm signing off this blog for 2 months. I'll update after the next doctor appointment!

Still looking good

It has been 4 days now with no swelling and very little pain. His old bruises are beginning to fade. There are some red spots on his lower legs, around his ankles and feet. Will says his feet hurt a little, but it sounds like it is not as bad as before. We have cut back on his medicine and are thinking he will be off of it completely in the next day or two. If things continue this way, we won't need to see the doctor until next week.

What a strange, confusing few weeks! God has a plan and I am glad we don't know that plan. We would just mess it all up! Not only have we learned about Will's condition (HSP); we've learned more important lessons about the unconditional love and support of family and friends, and the courage and strength we have as a family. So, as uncomfortable and painful as it may be, sometimes it takes a storm to reveal God's blessings and perhaps to put things in perspective. God is so good!

Holding Our Breath

It's been 24 hours since any swelling or pain. Will even played baseball this morning. It's been hours and he is still looking good! However he still has some large bruises developing. He has one on his waist/hip area and another behind his knee. The bruises are painful looking, but he says they only hurt a little.

We have been gradually cutting back on the Neproxen. He is now at half the dose originally prescribed. If he continues to have no swelling, he may be off the medication completely in a couple days.

Crossing our fingers and continuing to pray!

Just a quick update....

Genitals are no longer swollen. Just purple in color.

Right ankle continues to be swollen and rash is more prominent there. New rash appearing on lower legs.

Going to try a new tactic to keep him from playing at recess. We will take his DS to the office for him to go in at recesses and play. We might need to buy a new game for it to keep him entertained. He wants to keep up with everyone and does not rest well. However, when he doesn't rest, his legs get swollen and sore. If keeping him in at recess doesn't work, we might consider sending him to school for just half a day.