Day 9

Well, today was not as smooth as yesterday. He woke up great, even wore regular shoes today instead of the sandals that accomodate his swelling. But, he was pretty sore when I went to pick him up at school. His shoe on his right foot was way too tight. He's been down all night and needing help getting around. We'll have to see how he feels in the morning for his baseball game.

Day 8

Will had a great day and a great night! He was keeping up with his brother, running around and making noise. Never thought I'd miss that so much! His rash continues to develop and he is slightly swollen on his ankles. But, definitely better than before. We will be sleeping well tonight!

Day 7

Will's status is pretty much the same.
He complained that his stomach hurt tonight. But, it doesn't appear to be too bad, just annoying. I'm encouraged that he has his appetite back.
Walking was more difficult by about 6:30 tonight. He explains that it is "hard to balance." I asked him what made it hard. He says his legs are too swollen and hurt.
Thanks for checking in on him!
He said (as we ate another delicious meal provided for us by some wonderful friends), "We should make something for all these nice people." So, when we are back to normal, we will be making something delicious for our angels on earth.

Day 6 - Back to School

Will enjoyed the special treatment at school today. He told me he took it easy just like I asked. I was able to leave work a little early so I could get him soon after school let out. He was tired and swollen when I picked him up. He took it easy at home and he became more swollen as the evening went on. For the most part, he is improving. We still help him up the stairs at the end of the day and help him stand up. But, he can function through the day pretty normally. The rash is still evolving. Parts of it are going away, but new spots are appearing - mostly on his legs. I hope we have cool weather a little longer so it won't be too much of a bother to wear pants. The rash on his arms is the same today as it was yesterday. The greatest improvement is that he hasn't complained about stomach pains since yesterday. However, he doesn't have much of an appetite. But, I think I can kind of understand that given the way he must feel and he isn't really using as much energy.

I am amazed by Will's spirit! He is so brave. I don't even think he has cried once from the pain and he rarely complains. In fact, I have to ask him if he has any pain because he won't offer that information. My prayer is that this won't be that traumatic moment from his childhood that he never forgets. Instead, I hope it is that defining moment from his childhood that reminds him that he "can do all things through Christ!"

What is HSP?

In my short time experiencing and researching HSP, this is what I've learned. It is an autoimmune disorder with symptoms that are associated with an inflammatory disease. The symptoms of HSP develop as a result of the immune system reacting to something. The most common causes for this reaction are...

• infections
• medication
• insect bites
• cold weather
• some vaccinations
• chemicals

It is difficult sometimes to determine the exact cause. It is possible that my son's reaction was due to the strep throat virus that his brother had a couple months earlier. Or it could have been an insect bite since it is spring and he is playing outside more.  There is no genetic connection and it is not contagious. There is no cure or treatment for HSP. However, the symptoms associated with it can be treated. It is also a condition that can not be prevented. It is most common in boys ages 2-11, however it affects people of all ages. Once the symptoms of HSP have presented themselves, it can come back later as a reaction to one of the causes listed above. In all cases I have read, each time it returns, the symptoms are less severe.

The symptoms of HSP can be the scariest part of the disease.

• Rash In ALL cases, the first sign is a rash that develops on the legs, usually below the knees. The rash begins looking like some allergic reaction or hives. This rash is actually blood vessels that have become inflamed. Kind of like a bruise your body is giving itself. This same inflammation is happening in the intestines and kidneys as well.
• Swelling and pain in the joints This is actually arthritis. It is not a permanent condition and does not present any permanent problems commonly associated with long term arthritis sufferers. The arthritis goes away along with the other symptoms in a matter of weeks.
• Abdominal pain Not all patients will have abdominal pain. The severity of the pain is important to monitor closely. Patients may have nausea, vomiting, and/or bloody stool.

The above symptoms are the 3 that will be seen in the majority of HSP patients. Much information is on the Internet that provides the more serious complications that can develop with HSP. While it is important to monitor the patient to prevent these from developing and to catch it early, it generally occurs in a small percentage of patients. HSP is a renal condition. This means that one serious complication is the development of kidney problems. All patients that have been diagnosed with HSP will need to have their urine checked regularly for months following the first outbreak. This does not mean that the patient has kidney problems. Blood in the urine is a symptom to monitor most carefully. This could be a sign that the kidneys are not functioning properly. The reason patients need to have urine checked regularly is because there can be urinary blood that is not visible except under a microscope. Bowel obstruction is another complication of HSP. Again, this is rare and occurs only in a small percentage of patients.

So, why did I post this information? Because the initial symptoms of HSP are extremely scary for a parent. As you can see in earlier posts, my son is suffering from joint pain, sometimes unable to walk, and the rash itself is very intimidating! I don't know what tomorrow, next week or next month will look like for him. It may get worse before it gets better. But there is hope! I know the odds are in his favor of recovering from this quickly and without any serious complications. My hope is that our experience can provide hope and comfort to other families that find themselves in this situation. If you are reading this because you know our family, thank you for walking through this storm with us. Hopefully your new knowledge of HSP can help others too.

Day 5

Making lemonade for Mom!

Will stayed home from school today. He had a visit with the pediatrician who ran more tests for us. Everything looks good and healthy for all those internal things we worry about. The doctor consulted with a Rheumatoid specialist at Valley Children's Hospital to determine a proper dosage of Neproxin. Since the swelling and pain were not improving, they decided to increase the dose.

The rash is moving up his body. It is now on his hips and tummy and there are spots starting on his arms. Thankfully, he says he does not feel any pain except some tenderness in swollen spots. His ankles are still swollen and his fingers are beginning to swell. There is one really tender bump on his hip.

The doctor says he is alright to return to school. We just need to watch his activity level. I think today was a good day because he was not as active. I'm a little concerned about what will happen with all the activities he will be a part of tomorrow. I talked to the school and they are all aware of the circumstances.  Pants that don't stretch and socks get too tight on him. So, we borrowed some sweats from the neighbors and bought some sandals that can be adjusted for swelling. Just hope I'm doing the right thing. He really is anxious to get back to school, so I'm taking a leap of faith!

Day 4 - (since diagnosis)

The day started pretty well. We attended church together and Will was able to participate in our mild activities for the day. In the afternoon he discovered that his "rash" had moved to his upper thigh and groin area. It definitely got him concerned, but we did our best to not act too surprised. His legs were completely swollen. As the hours went by it became too painful for him to stand or walk. Laying down with some ice soothes the pain, but the swelling was not going down even with the Neproxin.

We originally had planned on sending him to school tomorrow, but it just doesn't seem reasonable now. Instead, we will go in to see the doctor and get another urine test to check his kidneys.

As parents we have discovered a new form of heartbreak...watching your child in so much pain. Carrying your 7 year old up the stairs, bathing him and helping him dress, hearing him say how it hurts. All things a parent never wants to see or hear from their child! We have both said to each other, "Why can't it be me instead of him?"

As I sit here thinking about all that has happened in just a few days, I can't help but think....how bad will this get before it goes away. Each moment that something new comes up I think, "OK...this is the worst of it, he will be alright." But, then something else happens. I pray that God will give him the strength to endure and that as parents we can be strong for him and ease his worries even if we can't ease the pain.

Sports

William has been home from school resting for 2 days. Today is his first baseball game and he was so excited to play! He had a great nights sleep (the first in 2 days) and he woke up feeling great. He played his best game ever. He hit 2 singles and was able to run all the way to home when a team mate hit a double. He was a little slow running bases, but he was having the best time!

We noticed he was getting tired about halfway through the game, but he played his best right up to the end. After going out to lunch and a quick run to Costco we came home to rest. He was tired at first with no pains anywhere. But about an hour later, he complained that his legs hurt again. His right knee and left ankle have become quite swollen and painful. It is difficult for him to walk, so he is resting on the couch.  A new joint is beginning to swell, his middle finger on his right hand. Apparently all this swelling and joint pain is arthritis. It will not be a permanent condition and there should not be any deformity later in life because of it. He still has the stomach pains every once in a while.

His appetite is still pretty good and he is drinking fluids whenever we hand it to him. He has been thanking me for taking care of him which I find so funny because there's nothing I'd rather do! So silly that kids don't get that until they become parents.

Going Into The Storm

William presented with a rash on his legs. Each spring he tends to get hives and react to some allergy in the air, so I figured that's all it was. But, the Benadryl just didn't do anything and it seemed to get worse. He had complained off and on that his legs hurt or that his stomach hurt, but I just chalked it up to growing pains. After a few days, we decided to take him to his pediatrician. We figured she'd prescribe a steroid to get rid of the rash and that would be the end. Unfortunately, our regular pediatrician was on vacation. The doctor we saw knew pretty quickly that he had HSP and ordered urine and blood tests. This was the first we heard of this condition and we really didn't know what to expect. The doctor said he would call with the results of the test that afternoon or the next day.

As the day went on, William complained more about stomach pains. We began noticing that his hand was swelling and then his elbow on the same arm began to swell. By the time we put him to bed his foot had begun to swell as well. I had already read about HSP on the internet and figured it would be fine until we heard from the doctor the next day. But, that night he did not sleep well and woke up with stomach pain a lot. So at 4:00AM, by husband and Will were on the road to Valley Children's Hospital. They confirmed the diagnosis of HSP and told us that there was no treatment for the condition. Just Motrin or Advil for pain and swelling.

When the doctor called back the next day with the results of the blood tests, he explained more about HSP which I pretty much already knew about from the internet. I shared that he had begun swelling so he prescribed Neproxin for him to take twice a day. Now we are prepared to monitor his urine and stool for the next couple months to make sure there is no blood. We have to watch closely to be sure this condition does not effect his kidneys.

And so the journey into the storm begins.....