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.

Just when you think things are calm...the storm picks up again!

We have been dealing with swelling and rash that comes and goes for a while as you can see from earlier posts. We have been rather content to go with the flow. This disease has a mind of it's own. It is scary and frustrating! But, we find comfort knowing that God has a plan and He will see us through. We sang a great song in church on Sunday that expresses just what we are feeling:

He never lets go, through the calm and through the storm
He never lets go, through every high and every low
He never lets go, He never lets go of me.

Forgive me if the following information is TMI (too much information). Being a "googler" myself, I searched for some information and answers to ease our concerns when this new symptom developed and could not find anything. So, I feel it is important to post this information for people who are looking for support and answers for themselves.

Yesterday, Will discovered a red spot on his penis. He showed it to us and we reassured him that it was part of his HSP and it will go away eventually. About an hour later he went to the bathroom and it became a large purplish red spot and was beginning to swell. Another hour went by and his entire penis had swollen and become purple. He was still able to urinate with no pain. However, he was uncomfortable with underwear on and did not want to touch it. I think it was very tender! We took him in to see his pediatrician today and her reaction was that she had never seen anything like this before. So, she immediately called up to the urologist at the clinic and he agreed to "squeeze us in" (that's code for sit in the waiting room for a really long time). While we waited, the lab was testing his urine as it was darker than usual. It came out fine. We think it was darker because Will hadn't been urinating much that day, probably because it was a little scary for him to look at and touch. The urologist looked at it and assured us that it looks worse than it is. Easy for him to say!! So, he explained that all of this was on the surface. Nothing is impeding normal function. It should go away just like all other symptoms have.

As far as the patient goes, he is so brave. He stayed home from school today because of the embarrassment and uncomfortable nature of things. I think this latest symptom has scared him the most! He is taking it all in stride. I assured him that this was all normal and things will be fine. Thank goodness he trusts us and his doctor. It was scary to have to see another doctor that he doesn't know. Especially to let another doctor touch him and look at things. When we were done he said "that wasn't so bad!"

Thank you for keeping us in your prayers!

When will it go away?

Tonight we visited Aunt Kelly's baby puppies!

We have been decreasing the amount of Neproxen that Will takes as the doctor recommended a couple days ago. But his symptoms are coming back since we started doing that. Tonight he had pain and swelling in his feet. He is in bed with ice packs on his feet and ankles to sooth the pain. He also complained of a stomach ache, but we are hoping it is from eating salad and drinking juice at dinner. We'll see how he feels in the morning.
Thanks for your prayers!

Dr. Appointment

Will has good and bad days as far as symptoms go. But, overall, he's fine! He is happy, smiling, and active. He has a good appetite and all the symptoms he has are the mild ones that do not indicate any complications internally. Basically, he has the rash and swelling that comes and goes. I wish it would just go away altogether, but as long as he is not too bothered by it...it's tolerable. Anytime he complains about his legs or feet hurting, it seems more like an achiness than the pain he was experiencing a couple weeks ago.

He had a doctor's appointment yesterday and the rash and swelling were down from a couple days earlier. The doctor refilled his prescription of Neproxin, but we are going to try to gradually keep lowering the dose each time. If swelling and rash comes back, we'll bring it back up to the original dose. His urine was tested and we haven't heard back from the doctor about the results, so we will assume it's alright. The doctor wants to see him again in 2 weeks.

Tonight he has some new spots appearing. The good thing is that he has no swelling! God is good!

Update

So after a great weekend, Will went back to school today. When I picked him up he was doing well, still didn't want to play at recess, but was a little more active in his afterschool program. We had Open House at his school tonight along with his Spring Performance. It was a bit much for him. His legs and feet are swollen again, he complained of some pain in his legs, and the rash has come back more pronounced.

We had called the doctor earlier in the day and have an appointment scheduled for 2 days from now. He is almost out of his medication and we don't have a refill for it. We recently cut back to the original dosage thinking he was improving, but now I'm thinking we need to stick with the higher dose and see if the doctor will call in a refill for us.

On the mend

Will felt better in the morning and was able to play baseball. It was taxing on him, but he was able to rest after the game while watching his little brother play.

All in all, he's been great this weekend! His rash is going away. Some new spots are appearing, but not as horrible looking as before. Very little swelling, just some in his wrist and that right foot of his. No complaining about pain.

We'll be doing a follow up visit to his pediatrician this week. I'm sure all is well as long his urine tests continue to come back alright.

God is so good, all the time!

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.....