Friday, August 31, 2012
To follow this blog...
To follow our experience with HSP, please start reading with the first entry titled "Why..."
May 25th, 2012 - Day 55
IT'S OVER!
DAY 10 AND NO NEW PURPURA!
We are all in shock. It's over and our son is fine.
Just like "they" said - it would just go away... and it did.
We sent out emails of thanks and of rejoice to all of those who prayed, helped, and supported us over the last 8 weeks.
This was humbling. I have NEVER taken my children's health for granted, but you can't possibly truly appreciate something like "health" until it is threatened.
I will never forget the suffering that my child endured.
I look at Isaac differently now. And yes, I still search his legs every day for purpura. The other day he had three mosquito bites on his legs. When I first saw them I almost vomited...and then I realized they were just mosquito bites.
I never understood the true power of prayer until this. I never doubted that there was a God, but the peace He brought me during these 8 weeks was unmistakable. Isaac is a gift, a treasure, all of my children are, but when God is holding your child and healing him, b/c no medicine can, that is when you see the miracle of your child and of God.
One last thing - Isaac continued to have leg pain and stomach pain on occasion. We started him on some multi-vits fortified with Iron on the advice of our doc. That helped tremendously and eventually all symptoms vanished.
We celebrated with a trip to Busch Gardens.
DAY 10 AND NO NEW PURPURA!
We are all in shock. It's over and our son is fine.
Just like "they" said - it would just go away... and it did.
We sent out emails of thanks and of rejoice to all of those who prayed, helped, and supported us over the last 8 weeks.
This was humbling. I have NEVER taken my children's health for granted, but you can't possibly truly appreciate something like "health" until it is threatened.
I will never forget the suffering that my child endured.
I look at Isaac differently now. And yes, I still search his legs every day for purpura. The other day he had three mosquito bites on his legs. When I first saw them I almost vomited...and then I realized they were just mosquito bites.
I never understood the true power of prayer until this. I never doubted that there was a God, but the peace He brought me during these 8 weeks was unmistakable. Isaac is a gift, a treasure, all of my children are, but when God is holding your child and healing him, b/c no medicine can, that is when you see the miracle of your child and of God.
One last thing - Isaac continued to have leg pain and stomach pain on occasion. We started him on some multi-vits fortified with Iron on the advice of our doc. That helped tremendously and eventually all symptoms vanished.
May 19th-24th, 2012 - Days 49-54
Good days.
No new purpura. Mild pain and soreness especially when he was on his feet a lot.
Perfect timing for the pool opening this weekend. Though I have to admit that Isaac was never really self-conscious about the purpura on his legs.
We have gone 9 days with no new purpura!
No new purpura. Mild pain and soreness especially when he was on his feet a lot.
Perfect timing for the pool opening this weekend. Though I have to admit that Isaac was never really self-conscious about the purpura on his legs.
We have gone 9 days with no new purpura!
May 18th, 2012 - Day 48
Pretty good day.
Isaac did complain of some nausea but the purpura on his legs is almost gone!
Isaac did complain of some nausea but the purpura on his legs is almost gone!
May 16th & 17th - Days 46 & 47
Day 46 went well until dinner. Isaac became very nauseous after dinner and his legs were bothering him considerably.
Day 47 was similar to day 46. In addition Isaac also complained of headaches.
Day 47 was similar to day 46. In addition Isaac also complained of headaches.
May 15th , 2012 - Day 45
More purpura today.
Isaac complained of a headache and was stiff and sore at bedtime.
The last few days have been rough. We are praying that things don't start to go downhill again.
Isaac complained of a headache and was stiff and sore at bedtime.
The last few days have been rough. We are praying that things don't start to go downhill again.
May 13th & 14th - Days 43 & 44
Both pretty good days with minimal pain in the evenings. He did have some stomach pain on day 44.
May 11th & 12th - Days 41 and 42
Both days Isaac felt pretty good. He was very stiff and sore by dinner time and we gave him ibuprofen.
Sadly, on day 42 he got more purpura. Such a let down.
Sadly, on day 42 he got more purpura. Such a let down.
May 10th, 2012 - Day 40
Isaac got new purpura today and it was depressing. Isaac started to cry. We were all so hopeful that this was over.
May 7th-9th, 2012 - Days 37-39
Good days.
The bruises on his legs are beginning to fade. His pain and soreness is minimal.
He has gone 7 days with no new purpura! We are so close!
The bruises on his legs are beginning to fade. His pain and soreness is minimal.
He has gone 7 days with no new purpura! We are so close!
May 5th & 6th, 2012 - Day 35 & 36
Isaac's face is still swollen on day 35. I was surprised that there was some residual swelling. His poor little body.
He didn't mention any pain today, though!
On day 36 the swelling was gone but he had slight bruising under his left eye from all of the swelling.
He didn't mention any pain today, though!
On day 36 the swelling was gone but he had slight bruising under his left eye from all of the swelling.
May 4th, 2012 - Day 34
Not a good day.
Isaac awoke with a severely swollen face, especially around his left eye. He said his face felt weird- and I bet it did.
We had a doctor's appointment today which was perfect timing considering the facial swelling. All is great with his pee and the doc says he is coming along fine. Thank you, Jesus.
I think that he did fine all day until after dinner when his legs began to bother him. However he was able to walk this evening. This is the first time in weeks that he is able to walk past 6:30. Things are definitely getting better for his legs!
Isaac awoke with a severely swollen face, especially around his left eye. He said his face felt weird- and I bet it did.
We had a doctor's appointment today which was perfect timing considering the facial swelling. All is great with his pee and the doc says he is coming along fine. Thank you, Jesus.
I think that he did fine all day until after dinner when his legs began to bother him. However he was able to walk this evening. This is the first time in weeks that he is able to walk past 6:30. Things are definitely getting better for his legs!
May 2nd & 3rd, 2012 - Days 32 & 33
Both days were pretty good.
Isaac got sore right after dinner and we gave him some ibuprofen and he felt much better.
He did get some new purpura on day 32...
Isaac got sore right after dinner and we gave him some ibuprofen and he felt much better.
He did get some new purpura on day 32...
May 1st, 2012 - Day 31
At this point in life we have all come to terms with the fact that this disease sucks and we are starting to put summer plans on hold. We don't want to make any more plans that have to be canceled. It is just too sad for Isaac.
Valuable Information: It is said that if you can go 10 days with no new purpura then you are "cured!" and will likely be on the road to a healthy, normal child again.
Since Isaac just got new purpura on day 29, I suspected that today would be a little rough - and it was. Isaac awoke feeling a little nauseous and his legs began to bother him quite a bit in the late afternoon.
Valuable Information: It is said that if you can go 10 days with no new purpura then you are "cured!" and will likely be on the road to a healthy, normal child again.
Since Isaac just got new purpura on day 29, I suspected that today would be a little rough - and it was. Isaac awoke feeling a little nauseous and his legs began to bother him quite a bit in the late afternoon.
April 30th, 2012 - Day 30
Good day.
Isaac is feeling good enough to do the monkey bars at the playground again. It has been a month now since he has tried anything truly athletic. Maybe things are starting to look up!
Isaac is feeling good enough to do the monkey bars at the playground again. It has been a month now since he has tried anything truly athletic. Maybe things are starting to look up!
April 29th, 2012 - Day 29
Good day.
Lots of new purpura...so we know what's coming...ugh.
Isaac stared to feel sore around 6pm but didn't want any medicine again. I have no idea why- but whatever works.
Lots of new purpura...so we know what's coming...ugh.
Isaac stared to feel sore around 6pm but didn't want any medicine again. I have no idea why- but whatever works.
April 27th, 2012 - Day 27
Overall a good day.
The hives were gone and pain and soreness held off until about 6pm.
The hives were gone and pain and soreness held off until about 6pm.
April 26th, 2012 - Day 26
The hives were back today. We still haven't figured out the hives. And truth be told, we never did figure it out.
Isaac felt good until about 7pm and then he was in a lot of pain in his back. The back pain is just debilitating.
Isaac felt good until about 7pm and then he was in a lot of pain in his back. The back pain is just debilitating.
April 25th, 2012 - Day 25
Overall a good day.
Isaac was stiff in the afternoon through his back and legs. He didn't mention any pain until dinnertime.
Isaac was stiff in the afternoon through his back and legs. He didn't mention any pain until dinnertime.
April 24th, 2012 - Day 24
We went to doc today and pee looked good. Yeah!
Isaac didn't mention any pain in his legs the entire day...I started to get hopeful.
His purpura started to look a little different than usual. It is much larger. I have no idea if that means anything.
April 23rd, 2012 - Day 23
Overall a better day.
He had a headache and pain in legs around 2. Gave him Ibuprofen and he did fine until about 6pm. I then gave him acetaminophen and he was still sore at bedtime.
He had a headache and pain in legs around 2. Gave him Ibuprofen and he did fine until about 6pm. I then gave him acetaminophen and he was still sore at bedtime.
April 22nd, 2012 - Day 22
The day started out with the right side of Isaac's face being very swollen - especially his eye. We have no idea why. Could be a result of the hives??? Who knows.
Pain and swelling set in at 2pm. Gave him Ibuprofen and he did well until 6:30pm.
The early leg pain and soreness is from the purpura on the 20th...the swollen face could be because of that too.
Pain and swelling set in at 2pm. Gave him Ibuprofen and he did well until 6:30pm.
The early leg pain and soreness is from the purpura on the 20th...the swollen face could be because of that too.
April 21st, 2012 - Day 21
Good day.
Around 6pm Isaac broke out in hives - we have no idea why. The only thing that even was a little different today is that we went to a friend's house and played outside and Isaac got about 10 mosquito bites. By the way- mosquito bites turn to purpura...and so do hives.
Pain and soreness settled in around 6:30.
Around 6pm Isaac broke out in hives - we have no idea why. The only thing that even was a little different today is that we went to a friend's house and played outside and Isaac got about 10 mosquito bites. By the way- mosquito bites turn to purpura...and so do hives.
Pain and soreness settled in around 6:30.
April 20th, 2012 - Day 20
Pretty good day. No mention of nausea and ate well.
Pain and swelling held off until 6:30.
Unfortunately lots of new purpura today. :-( Isaac knows that purpura today means sore legs soon.
Pain and swelling held off until 6:30.
Unfortunately lots of new purpura today. :-( Isaac knows that purpura today means sore legs soon.
April 19th, 2012 - Day 19
Overall I think he had a "better than usual" day. He had a decent appetite and other than riding in the car he didn't mention being nauseous.
By 2pm he had a headache and pain and swelling in legs. I gave him some Ibuprofen and he did well until 6:30. Then he was done walking for the day.
By 2pm he had a headache and pain and swelling in legs. I gave him some Ibuprofen and he did well until 6:30. Then he was done walking for the day.
April 18th, 2012 - Day 18
Slightly nauseous all day but ate okay.He had pain and swelling in his feet and knees on and off all day. By 3pm he was done walking for the day. Makes sense since he had a big break out of purpura yesterday.
April 17th, 2012 - Day 17
Isaac awoke with more nausea in the morning and I gave him a Zophran. He felt better soon thereafter and ate some breakfast. I was relieved to have my child eating again. I dropped him off at preschool and when I picked him up three hours later he had hives all over his legs and arms. No more Zophran for him. I gave him some Benedryl and called our doc. The doc was very surprised and felt like he would be okay to continue on the Zophran. I wasn't so sure. His immune system was already over-reacting to itself and I wanted to minimize the trauma.
The good news is that over the next few days the nausea lessened and Isaac was able to eat a little more and ride in the car without vomiting.
The hives all turned to purpura. He had a rough afternoon with swelling and soreness in his legs and feet.
The good news is that over the next few days the nausea lessened and Isaac was able to eat a little more and ride in the car without vomiting.
The hives all turned to purpura. He had a rough afternoon with swelling and soreness in his legs and feet.
Thursday, August 30, 2012
April 16th, 2012 - Day 16
We went to the pediatrician today which was a huge relief for me. It was a bad day for Isaac and I wanted a doctor to determine whether he was okay...I was overwhelmed with making the call every every morning. I felt like everyday presented more questions. I needed some help with the nausea and the vomiting and lack of eating.
For the past 4-5 days driving in the car was torturous for Isaac because of the nausea. We drove everywhere with windows down and only went somewhere if we absolutely had to. Even still he vomited in the car a total of 3 times. I had the car professionally cleaned.
Isaac was weighed and had lost 2 pounds in a week. Our doc prescribed Zophran. I dropped off the prescription and took Isaac home. He was too sick for me to take back out to pick it up. I also needed to pick up his sister from school. So I had my sweet neighbor stay with him and love on him until I could get back with the sister and the meds.
Within the hour of taking the Zophran Isaac felt a million times better. He even ate some dinner that night!
Advice: If/when your child gets to the stomach cramping/nausea point of this disease, encourage them to eat tablespoons of food as often as they will take it. We completely gave up on meals and just let him eat crackers or whatever sounded good at the time. He will catch up on his nutrition later.
For the past 4-5 days driving in the car was torturous for Isaac because of the nausea. We drove everywhere with windows down and only went somewhere if we absolutely had to. Even still he vomited in the car a total of 3 times. I had the car professionally cleaned.
Isaac was weighed and had lost 2 pounds in a week. Our doc prescribed Zophran. I dropped off the prescription and took Isaac home. He was too sick for me to take back out to pick it up. I also needed to pick up his sister from school. So I had my sweet neighbor stay with him and love on him until I could get back with the sister and the meds.
Within the hour of taking the Zophran Isaac felt a million times better. He even ate some dinner that night!
Advice: If/when your child gets to the stomach cramping/nausea point of this disease, encourage them to eat tablespoons of food as often as they will take it. We completely gave up on meals and just let him eat crackers or whatever sounded good at the time. He will catch up on his nutrition later.
April 15th, 2012 - Day 15
Crappy day. Isaac just didn't feel well all day. He had lots of soreness and swelling in various places all over his body.
His eating is still poor- which isn't helping him feel any better.
Realization: About this time we figured out that the swelling and soreness follows the purpura. Once new purpura appeared Isaac would have pain and swelling in that area within 12-36 hours.
His eating is still poor- which isn't helping him feel any better.
Realization: About this time we figured out that the swelling and soreness follows the purpura. Once new purpura appeared Isaac would have pain and swelling in that area within 12-36 hours.
April 14th, 2012 - Day 14
Very similar day to the 13th. He awoke feeling better but tuckered out by early afternoon. He was extremely nauseous in the afternoon.
Still eating very little.
Still eating very little.
April 13th, 2012 - Day 13
Isaac awoke feeling much better than yesterday but he was still quite lethargic and sore by early afternoon. The swelling became worse as the day progressed and he still wouldn't eat much.
April 12th, 2012 - Day 12
Terrible Day. Isaac was horribly lethargic all day and hardly drank or ate anything for the entire day. Said his stomach hurt and he felt sick to his stomach. I guess this is the stomach pains that were referred to in all of the descriptions I read. I am guessing it is something like terrible morning sickness or the way one feels when one has partied too much the night before. So wrong for a 4-yr-old to know that feeling.
The good news is that the pain in his legs in the afternoons is not nearly as intense.
The good news is that the pain in his legs in the afternoons is not nearly as intense.
April 11th, 2012 - Day 11
More vomiting.
The swelling moved into left hand - which is better than when it was in his right hand.
Legs better in the afternoons and evenings, though he is still unwilling/unable to walk on them.
The swelling moved into left hand - which is better than when it was in his right hand.
Legs better in the afternoons and evenings, though he is still unwilling/unable to walk on them.
April 10th, 2012 - Day 10
Legs were better than usual in the evening. That gave us some hope- which was nice.
More vomiting though and his overall appetite has been poor for several days.
This was his first day back to preschool since the nightmare began. I had a long talk with his amazing teachers. They let him wear Crocs, eat whenever he felt like it (which was never) and drink whenever he wanted. Sometimes he just hung out in a bean bag chair. But he was glad to be there and be a part of things. I don't even think it occurred to him that he wasn't feeling so well.
More vomiting though and his overall appetite has been poor for several days.
This was his first day back to preschool since the nightmare began. I had a long talk with his amazing teachers. They let him wear Crocs, eat whenever he felt like it (which was never) and drink whenever he wanted. Sometimes he just hung out in a bean bag chair. But he was glad to be there and be a part of things. I don't even think it occurred to him that he wasn't feeling so well.
April 9th, 2012 - Day 9
Another rough day. The swelling moved to Isaac's chest and scalp. He didn't even want to lay his head on his pillow as his scalp was so sore. Of course his legs were still swollen and painful as well.
He also vomited.
We went back to the pediatrician and his pee was tested. So far, so good in that area i.e. no major kidney concerns at this point. We are all just on watch. Nothing anyone can do.
Advice: Keep your child well-hydrated. I am a big water drinker and as a result my kids are big drinkers too - especially Isaac who often takes in 36oz a day. Even though he didn't feel like eating he was still drinking well (though on occasion he did vomit was he was drinking). Isaac doesn't like water so he drinks diluted juice. Obviously our kidneys benefit from hydration and I feel certain that one of the main ways Isaac avoided kidney problems was because he remained well-hydrated.
He also vomited.
We went back to the pediatrician and his pee was tested. So far, so good in that area i.e. no major kidney concerns at this point. We are all just on watch. Nothing anyone can do.
Advice: Keep your child well-hydrated. I am a big water drinker and as a result my kids are big drinkers too - especially Isaac who often takes in 36oz a day. Even though he didn't feel like eating he was still drinking well (though on occasion he did vomit was he was drinking). Isaac doesn't like water so he drinks diluted juice. Obviously our kidneys benefit from hydration and I feel certain that one of the main ways Isaac avoided kidney problems was because he remained well-hydrated.
April 8th, 2012 - Day 8
Happy Easter!
We needed a little joy and hope. At this point we had shared this news about Isaac's diagnosis with practically no one except some family members and two close friends. Still, we just didn't know how to handle all of this.
We decided to head to church and celebrate the day. All seemed well when we left Isaac in his Sunday school class, but when we picked him up his right hand was swollen and he was unable to use it. I was so sad I could hardly be in church. We saw some of our close friends and shared with them and the mom was in tears. Seeing Isaac's little hand so swollen and worthless was more than any mother can take.
He didn't eat much all day.
A big, little hand.
That evening we noticed that the purpura had a hay day...
We needed a little joy and hope. At this point we had shared this news about Isaac's diagnosis with practically no one except some family members and two close friends. Still, we just didn't know how to handle all of this.
We decided to head to church and celebrate the day. All seemed well when we left Isaac in his Sunday school class, but when we picked him up his right hand was swollen and he was unable to use it. I was so sad I could hardly be in church. We saw some of our close friends and shared with them and the mom was in tears. Seeing Isaac's little hand so swollen and worthless was more than any mother can take.
He didn't eat much all day.
April 7th, 2012 - Day 7
We awoke at Nana's house and ate a quick breakfast. A new exhibit
opened at our zoo and we were all excited to go. Shortly after breakfast
Isaac vomited. Three vomits in two days isn't a good sign.
The zoo was packed and turned out it was their biggest attendance day ever. Not the best day to take a sick child to the zoo. But we went in and the first two hours were fun. Then Isaac told me that his back was sore. I had him sit in the stroller and wouldn't let him get up. We started to head back to the gates. Shortly after he told me that his back was really hurting and he started to cry. I went into Tiger Mother mode. I put my oldest daughter into the double stroller with Isaac to kind of support him, I picked up my two-year-old and started to jog and pray. I thanked God for making me an athlete and then I prayed that he would get us through whatever was coming. We didn't make it to the gate but to a gift shop. They called the zoo EMT and we were shuttled to my car. The gift shop staff were terrified and a couple of concerned mothers wouldn't leave our side. I was terrified too. No one told me this could happen. Everything I had read and all that had been discussed was the disease being on lower extremities.
I gave Isaac a big dose of Ibuprofen, settled him in his car seat, put on a video and got ready for the 90 minute drive home. He fell asleep and awoke at home feeling much better. He was back on his feet for a couple of hours and then the swelling was back again in his feet, legs and back. We called it a night at that point.
The zoo was packed and turned out it was their biggest attendance day ever. Not the best day to take a sick child to the zoo. But we went in and the first two hours were fun. Then Isaac told me that his back was sore. I had him sit in the stroller and wouldn't let him get up. We started to head back to the gates. Shortly after he told me that his back was really hurting and he started to cry. I went into Tiger Mother mode. I put my oldest daughter into the double stroller with Isaac to kind of support him, I picked up my two-year-old and started to jog and pray. I thanked God for making me an athlete and then I prayed that he would get us through whatever was coming. We didn't make it to the gate but to a gift shop. They called the zoo EMT and we were shuttled to my car. The gift shop staff were terrified and a couple of concerned mothers wouldn't leave our side. I was terrified too. No one told me this could happen. Everything I had read and all that had been discussed was the disease being on lower extremities.
I gave Isaac a big dose of Ibuprofen, settled him in his car seat, put on a video and got ready for the 90 minute drive home. He fell asleep and awoke at home feeling much better. He was back on his feet for a couple of hours and then the swelling was back again in his feet, legs and back. We called it a night at that point.
April 6th, 2012 - Day 6
We awoke at Nana's house and ate breakfast. Shortly after breakfast Isaac vomited. Not unusual for him. He vomits when he eats too much. Truthfully, he is just a vomiter. When he gets a high fever he vomits, when he eats too much he vomits, when he drinks too much at one time he vomits, when he his stomach is full of phlegm because he coughs it up but won't spit it out, he vomits.
But then he vomited again. I hoped it was just some weird coincidence. Boy was I wrong.
Still lots of pain and swelling upon waking in the morning and in the afternoon until bedtime.
But then he vomited again. I hoped it was just some weird coincidence. Boy was I wrong.
Still lots of pain and swelling upon waking in the morning and in the afternoon until bedtime.
Friday, August 24, 2012
April 5th, 2012 - Day 5
A rough day overall. Lots of swelling in his feet and knees. The mornings are always rough and then as he gets moving a little bit he is able to walk. By 3 or 4 pm the pain and swelling is back and he is unable to walk. I gave Isaac ibuprofen as needed. Usually once a day in the afternoon when the swelling would get worse, but sometimes twice a day. During these weeks Isaac often awoke at night. He wasn't necessarily in pain, just restless. We usually took him to the bathroom and rubbed his back until he fell back asleep. I tried to avoid giving him more meds if possible.
Advice: Give your child pain meds as they need them (and in accordance with dosage guidelines). Don't stick to a schedule. Some days will be worse and they will need more. Some days are better and they may not need any at all.
I spent a good portion of the morning calling pediatric urologists, rheumatologists, and immunologists. I find that the majority had at least heard of HSP but NONE of them had ever treated a patient with the disease. Because I live in an area where two amazing medical hospitals are located I went ahead and called to see how far out they were scheduling appointments...6-8 weeks and that was with a referral! But the truth was, I knew that no one could help my son unless things started to take a turn for the worse. I also didn't want to take an appointment from a child who could truly benefit. On my side though was a wonderful neighbor who called in a favor and got us in touch with a top doc at one of these hospitals. The doc emailed me and told me to hang tight. If things did get worse he would get us in immediately. I was so thankful for some good news! But of course I prayed I would never meet the man.
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In the photos above and below you can see the swelling in his foot and ankle and the purpura.
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His poor little knee was so swollen.
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On this day his right foot was worse than the left and his left knee was worse than the right.
Advice: Give your child pain meds as they need them (and in accordance with dosage guidelines). Don't stick to a schedule. Some days will be worse and they will need more. Some days are better and they may not need any at all.
I spent a good portion of the morning calling pediatric urologists, rheumatologists, and immunologists. I find that the majority had at least heard of HSP but NONE of them had ever treated a patient with the disease. Because I live in an area where two amazing medical hospitals are located I went ahead and called to see how far out they were scheduling appointments...6-8 weeks and that was with a referral! But the truth was, I knew that no one could help my son unless things started to take a turn for the worse. I also didn't want to take an appointment from a child who could truly benefit. On my side though was a wonderful neighbor who called in a favor and got us in touch with a top doc at one of these hospitals. The doc emailed me and told me to hang tight. If things did get worse he would get us in immediately. I was so thankful for some good news! But of course I prayed I would never meet the man.
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April 4th, 2012 - Day 4
We had planned to drive 2 hours to Nana's house for Spring Break. With an okay from our doc we headed out. By the time we arrived...early afternoon Isaac could not walk at all. The swelling had moved into his knees- they were huge! And Isaac was in pain. This was the first time I really heard him complain and be upset by the pain. And it wasn't like the growing pains we had dealt with in the past. He did not want me to touch his legs. It was scary. I called the doc who called me right back and told me not to panic. We gave him a huge dose of ibuprofen and waited.
It occurred to me that the 2 1/2 hours in the car had allowed the swelling to settle-in. Now, the swelling is going to settle-in anyway, but sitting for that long period with little circulation made it settle-in quicker and it the pain was intensified.
Advice: Keep your child as physically active as they can handle. This played out so many times over the next two months.
That evening, once the kids were in bed and asleep, I felt the stress and anxiety just come down. I was angry. Very angry. Why was this happening to my child? Why couldn't anyone help with the pain and swelling? Why was the Internet information so generic and worthless? Why did that mother send her sick child to school? I really needed to blame someone even though I knew it was wrong. But then I was thankful that the chances were high that he would get out of this unscathed. It wasn't cancer after all and he wasn't in the hospital. Time to count blessings not compare greivances.
Advice: It's okay to feel angry and sad, overwhelmed and frustrated. Find a few good friends or family to talk to on a regular basis. I regularly felt that my docs (though amazing) and posted literature underplayed the pain this disease causes. Seeing your child in paralyzing, debilitating pain is not easy to experience.
It occurred to me that the 2 1/2 hours in the car had allowed the swelling to settle-in. Now, the swelling is going to settle-in anyway, but sitting for that long period with little circulation made it settle-in quicker and it the pain was intensified.
Advice: Keep your child as physically active as they can handle. This played out so many times over the next two months.
That evening, once the kids were in bed and asleep, I felt the stress and anxiety just come down. I was angry. Very angry. Why was this happening to my child? Why couldn't anyone help with the pain and swelling? Why was the Internet information so generic and worthless? Why did that mother send her sick child to school? I really needed to blame someone even though I knew it was wrong. But then I was thankful that the chances were high that he would get out of this unscathed. It wasn't cancer after all and he wasn't in the hospital. Time to count blessings not compare greivances.
Advice: It's okay to feel angry and sad, overwhelmed and frustrated. Find a few good friends or family to talk to on a regular basis. I regularly felt that my docs (though amazing) and posted literature underplayed the pain this disease causes. Seeing your child in paralyzing, debilitating pain is not easy to experience.
April 3rd, 2012 - Day 3
Things officially began to go downhill on this day. Isaac awoke and instead of leaping and bounding into my bedroom to joyfully wake me by pouncing on me, he crawled in. He got on the bed, didn't say anything but "Can I watch a video?" I turned on the tv and looked at his legs. The purpura had spread to his knees and lower thighs and his feet and ankles were severely swollen. The purpura was larger and darker now. But he didn't say a word about it. I asked him how he felt and he said he felt fine.
It was Spring Break. Our plan for that day was to meet Isaac's best buddy at the Life and Science Museum aka huge park, zoo, activity center and lots of walking. I didn't know what to do. If I kept us home, I was going to have three angry kids on my hands, crawling up the walls all day long. But mostly I was concerned about Isaac's mental health as much as his physical health. I didn't want this disease to define our life and daily activities. I didn't want Isaac to think he was less than he was before.
And so we went. I took the double stroller-good call. He did run around a little. But he rode most of the day and didn't think much of it. He played as hard as his body would let him, and I just kind of observed. We all had a good time.
That afternoon was his first soccer practice/game. By then he was tired. He was excited though and I am the coach, so we got the shin guards and socks on, tied on the cleats and headed out. During our team meeting I briefly explained about Isaac's "condition" and made sure that everyone knew that he was safe to be around. The kids could have cared less about the purpura (which you could hardly see when covered by soccer shorts and tall socks) but the moms all had that look of "Poor Thing." There were lots of questions. And I understood their curiosity- but unfortunately I didn't have many answers.
By the end of practice he was too tired and swollen to walk. His legs bothered him for the rest of the evening.
Moving forward we decided to allow Isaac the ability to do whatever he wanted to do, if he felt like doing it. Our doc and all of the literature continued to reinforce that there was absolutely nothing we could do to make this better and so I figured there wasn't a whole lot we could do to make it worse. And so busy we stayed!
Advice: Don't stop your life. Keep busy!
It was Spring Break. Our plan for that day was to meet Isaac's best buddy at the Life and Science Museum aka huge park, zoo, activity center and lots of walking. I didn't know what to do. If I kept us home, I was going to have three angry kids on my hands, crawling up the walls all day long. But mostly I was concerned about Isaac's mental health as much as his physical health. I didn't want this disease to define our life and daily activities. I didn't want Isaac to think he was less than he was before.
And so we went. I took the double stroller-good call. He did run around a little. But he rode most of the day and didn't think much of it. He played as hard as his body would let him, and I just kind of observed. We all had a good time.
That afternoon was his first soccer practice/game. By then he was tired. He was excited though and I am the coach, so we got the shin guards and socks on, tied on the cleats and headed out. During our team meeting I briefly explained about Isaac's "condition" and made sure that everyone knew that he was safe to be around. The kids could have cared less about the purpura (which you could hardly see when covered by soccer shorts and tall socks) but the moms all had that look of "Poor Thing." There were lots of questions. And I understood their curiosity- but unfortunately I didn't have many answers.
By the end of practice he was too tired and swollen to walk. His legs bothered him for the rest of the evening.
Moving forward we decided to allow Isaac the ability to do whatever he wanted to do, if he felt like doing it. Our doc and all of the literature continued to reinforce that there was absolutely nothing we could do to make this better and so I figured there wasn't a whole lot we could do to make it worse. And so busy we stayed!
Advice: Don't stop your life. Keep busy!
Thursday, August 23, 2012
April 2nd, 2012 - Day 2
Isaac awoke and the swelling was down considerably. He was hobbling around. I took him into the doc first thing and he was seen immediately. Our regular pediatrician was out and so we saw the doc who had helped us on the phone the night before. He confirmed two things: First the little bumps on Isaac's bum did look like Hand Foot Mouth bumps and second that the spots on Isaac's legs coupled with the swelling looked exactly like HSP.
Some blood was taken (to confirm there was no cancer) and some urine was taken as well. The urine was tested for blood and protein levels. Blood in the urine is normal for this disease and high levels of protein indicate damage to the kidneys. Isaac had no blood in his urine and the protein levels were slightly raised, as expected, but not dangerously high.
This doc had only seen two other cases of HSP in his 30 years of practicing. He said that every case presents differently and there was absolutely no way to predict how long it would last.
I actually left feeling pretty good. Isaac was doing okay that day and I naively assumed that he would have a "mild" case! HA!
By late afternoon the swelling was back in his feet and ankles and he didn't feel like walking. And so we carried him. And this is how we lived for the next 5-6 weeks.
Some blood was taken (to confirm there was no cancer) and some urine was taken as well. The urine was tested for blood and protein levels. Blood in the urine is normal for this disease and high levels of protein indicate damage to the kidneys. Isaac had no blood in his urine and the protein levels were slightly raised, as expected, but not dangerously high.
This doc had only seen two other cases of HSP in his 30 years of practicing. He said that every case presents differently and there was absolutely no way to predict how long it would last.
I actually left feeling pretty good. Isaac was doing okay that day and I naively assumed that he would have a "mild" case! HA!
By late afternoon the swelling was back in his feet and ankles and he didn't feel like walking. And so we carried him. And this is how we lived for the next 5-6 weeks.
April 1st, 2012 - Day 1
It's April Fool's Day - I wish this was all a joke.
At some point in the afternoon I noticed several faint purple, small, "bruises" on Isaac's legs. I didn't really think much of it other than he is an extremely active child. That evening we went out to dinner. Isaac's Nana tied his shoes for him. Isaac likes his shoes tied unhealthily tight...Nana didn't know she was being conned into tying them too tight. Towards the end of dinner Isaac was complaining that his feet were bothering him. This had happened before when his shoes were tied too tight and he literally couldn't walk. So we took his shoes off and later carried him to the car. Around bath time he still couldn't walk. But this wasn't shocking as on a previous occasion when his dad tied his shoes too tight Isaac couldn't walk for almost an entire day. But by bedtime he wouldn't even put weight on his feet and then there were the purple spots. There were a lot more of them. And Isaac's feet and ankles were terribly swollen. I began to panic.
I felt him and he wasn't warm- no temperature. Because he didn't have a temp I didn't feel like I needed to rush him to the ER. Instead I put in a call to our pediatrician and to an ER nurse. Over the next several hours, lots of phone calls, and plenty of time on Google, he was diagnosed with Henoch-Schonlein Purpura. My doc felt we were safe at home for the night. Though terrified, I was thanking God that Leukemia didn't seem to fit the description. I didn't get much sleep.
At this point Isaac wasn't in a lot of pain. Only when he tried to walk...which he wasn't doing.
At some point in the afternoon I noticed several faint purple, small, "bruises" on Isaac's legs. I didn't really think much of it other than he is an extremely active child. That evening we went out to dinner. Isaac's Nana tied his shoes for him. Isaac likes his shoes tied unhealthily tight...Nana didn't know she was being conned into tying them too tight. Towards the end of dinner Isaac was complaining that his feet were bothering him. This had happened before when his shoes were tied too tight and he literally couldn't walk. So we took his shoes off and later carried him to the car. Around bath time he still couldn't walk. But this wasn't shocking as on a previous occasion when his dad tied his shoes too tight Isaac couldn't walk for almost an entire day. But by bedtime he wouldn't even put weight on his feet and then there were the purple spots. There were a lot more of them. And Isaac's feet and ankles were terribly swollen. I began to panic.
I felt him and he wasn't warm- no temperature. Because he didn't have a temp I didn't feel like I needed to rush him to the ER. Instead I put in a call to our pediatrician and to an ER nurse. Over the next several hours, lots of phone calls, and plenty of time on Google, he was diagnosed with Henoch-Schonlein Purpura. My doc felt we were safe at home for the night. Though terrified, I was thanking God that Leukemia didn't seem to fit the description. I didn't get much sleep.
At this point Isaac wasn't in a lot of pain. Only when he tried to walk...which he wasn't doing.
Tuesday, August 21, 2012
What...
What exactly is Henoch-Schonlein Purpura aka HSP? Please refer to Wikipedia for a technical explanation. In a nutshell it is an auto-immune disease that affects the capillaries that are in the skin, kidneys and other organs.
http://en.wikipedia.org/wiki/Henoch_Schonlein_purpura
Another great website...
http://kidney.niddk.nih.gov/kudiseases/pubs/hsp/
It causes swelling in the joints, abdominal pain and nausea, oh and of course purpura. The purpura is not painful...it just looks terrible. The most difficult part about this disease is not the purpura, but the extreme joint pain. I cannot even describe the agony I experienced seeing my son in constant, extreme pain... for weeks on end.
HSP is often preceded by an infection. We suspect that Isaac picked-up a case of Hand Foot Mouth Disease from his sister, Leah, who picked up the virus from a child in her preschool class. That child was sent to preschool with a diagnosed and highly contagious case of HFMD. No kidding. We suspected that Isaac had a very mild case of the virus as he had two little bumps on his bum...that was Friday. Our lives changed on Sunday.
How does the saying go...An ounce of prevention is worth a pound of cure
If only we'd had a little prevention.
Approximately 10 in 100,000 people contract HSP.
http://en.wikipedia.org/wiki/Henoch_Schonlein_purpura
Another great website...
http://kidney.niddk.nih.gov/kudiseases/pubs/hsp/
It causes swelling in the joints, abdominal pain and nausea, oh and of course purpura. The purpura is not painful...it just looks terrible. The most difficult part about this disease is not the purpura, but the extreme joint pain. I cannot even describe the agony I experienced seeing my son in constant, extreme pain... for weeks on end.
HSP is often preceded by an infection. We suspect that Isaac picked-up a case of Hand Foot Mouth Disease from his sister, Leah, who picked up the virus from a child in her preschool class. That child was sent to preschool with a diagnosed and highly contagious case of HFMD. No kidding. We suspected that Isaac had a very mild case of the virus as he had two little bumps on his bum...that was Friday. Our lives changed on Sunday.
How does the saying go...An ounce of prevention is worth a pound of cure
If only we'd had a little prevention.
Approximately 10 in 100,000 people contract HSP.
Why...
Our 4-year-old son was diagnosed with Henoch-Schonlein Purpura (HSP) on April 2nd, 2012. We had no idea what was coming. We were terrified. The journey was frightening, sad, hopeful, disappointing and long. Ultimately, Isaac is now back to his old self and we have not noticed any long-term effects. We are thankful to God and our prayer warriors for our healthy son. I learned so much about this disease and how to manage it. I hope that we can help someone else.
A few things about this blog:
1. I am not a physician so the information in this blog is my opinion.
2. Important information is high-lighted in blue.
3. If you or your child has HSP I encourage you to keep a well-documented calendar.
On the calendar include:
a. Every time you notice new purpura and where
b. Where you have joint pain and swelling and what time of day the inflamation occurs
c. When you take/give meds and what kinds
d. Anything else unusual
This will be helpful for you and your doctors.
A few things about this blog:
1. I am not a physician so the information in this blog is my opinion.
2. Important information is high-lighted in blue.
3. If you or your child has HSP I encourage you to keep a well-documented calendar.
On the calendar include:
a. Every time you notice new purpura and where
b. Where you have joint pain and swelling and what time of day the inflamation occurs
c. When you take/give meds and what kinds
d. Anything else unusual
This will be helpful for you and your doctors.
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