Jaylon update

Hello all,

Jaylon started experiencing significant abdominal pain over the past few days. At first it was intermittent, but last night he started losing his appetite and just wanted to curl up in my lap all night. He is also complaining of inner ear pain. The good news is that his rash is continuing to subside, and might be completely cleared within the next few days if no new spots show up.

He has an appointment at Children's Mercy today, so Brooke will take him up and have the docs address these concerns.

Please pray for his spirits to stay lifted, as I know he is getting exhaused with all this. Please pray that whatever is causing the abdominal and ear pain will be healed.

Thank you so much.

Jaylon update

Hey everyone,

I'm home sick today so got to see Jaylon before he went to school. He is looking better every day...only faint traces of the rash on his face. The rest of the rash throughout his body is clearing nicely, with the exception of a few new rash areas around his knees which are making it still uncomfortable for him to walk. He has been going to school every day since middle of last week.

At the last doc visit, they detected some protein in his urine, which suggests that his kidneys are being affected by his condition. Please pray for a complete recovery for Jaylon. If his kidneys don't clear up, we could be looking at some very scary possibilities. It is very rare that HSP causes significant kidney issues, so we are not alarmed. However, the docs don't want to take any chances on it...so prescribed a steroid (Prednisone) for him. This is making him very emotional and sometime very aggressive.

The other night, Jaylon was telling us a story and we started smiling at what he was saying. He thought we were laughing AT him, so got upset and threatened to turn off the TV without us being able to record the program we were watching. That made us laugh, which upset him even more. So he stormed upstairs and burst into tears, crying for a good ten minutes. This might be typical behavior of some kids, but it is not normal for JJ. Being around him, it's obvious how the meds are affecting his emotions. Sometimes I think he gets upset without even knowing why.

I explained the way his body is being impacted by the meds after his first big outburst, and I think that helped him a little.

We are eternally grateful for the level of recovery JJ has experienced so far. We thank God every day for our family and for all of you.

Much love,

Adam

JJ update

Hi everyone,

I took a vacation day and accompanied Jaylon to his first day back at school yesterday. He has been feeling better and dealing with less joint pain, so we decided to give it a shot. Ironically, he woke up in the morning with more rash spots on his legs and arms and some tenderness in his knees. He was determined to go, however, as we had talked about it the day before.

We were a few minutes late, so walked into the classroom to find the rest of the students gathered in a circle. One of them saw us and yelled, "JJ!". Then they all broke into cheering and a few ran over to give him a hug. It made him feel so good, he had to leap into the center of the kid circle and strike a super-hero pose. It was a heart-warming moment for a dad.

He made it through the half-day just fine, and was a very happy little boy. By evening, he was thoroughly exhausted and the new rash areas were bothering him quite a bit. He still has a pretty significant ear infection and gets slammed with waves of joint pain a few times a day.

Please pray for his recovery and for God to provide us with the mental and physical resources we need to get through this. We are greatly hopeful that he will fully recover in the near future.

Much love,

Adam

Jaylon update

JJ woke up at my sister's house in KC with very puffy eyes today. Most of his symptoms are pretty much the same as yesterday. The rash seems to be clearing a little on his feet but showing up more on his face. That is to be expected.

He and Brooke are spending the day in KC before coming back home to Emporia later this afternoon. They needed a day off!

Here is a pic of JJ at the Crayola Cafe at Crown Center...looks like he might be wearing Maureen'ss sweatshirt?

Jaylon update: Tuesday 1/26/10

Hello everyone,

Well, in many ways, good news...

Under doctor's orders, Brooke rocketed up I-35 today and got JJ straight into the emergency room at Children's Mercy. He was examined by two ER doctors, who then conferred with the Rheumatologist (sp?). The consensus: all of JJ's symptoms are typical, while more pronounced than normal, of HSP. The ER doc examined him thoroughly to ensure that there were no signs of any type of infection or other medical condition. They are positive that there are no complications and that we can continue to expect this thing to run it's 4-6 week course and then go away.

The eye-swelling is more disturbing because the eyelid tissue can swell so profoundly. But once again, this is not a red flag, only typical of the disease.

The staff feels there is no need to admit him because they would only treat him the same way we are treating him at home.

So, no complications, infections or additional concerns...only a severe case of HSP. They are going to run a series of tests still today, just to verify their findings. So Brooke and JJ will probably stay with my mom or sister tonight and come home tomorrow.

They still want him to come back next Monday so they can monitor his progress. They are prescribing a pain med to help him sleep through the night. We will also continue his antibiotic for the ear infection and the ointment for the rash, which both seem to be working.

This is such a roller coaster for us. Every time something new comes up, we start panicking. Then we find out that its just the natural course of the disease and we calm down. Then something new comes up and we get nervous again. It's just so hard to see his beautiful skin all marred up with rash and his big blue eyes swollen shut. It's hard to see my little tazmanian devil hobbling around like an old man. And so hard to see a kid who usually sleeps soundly just writhing and crying his way through the night.

The crazy thing is...he is just taking it all in stride...staying cheerful and enjoying the adventure (except when he's in pain, obviously).

Thank you all once again for your prayers and support. It helps so much when we feel like we are not going through this alone.

Special thanks to my sweet mom and sister, who rushed to the hospital on short notice to support Brooke and JJ while I stayed in Emporia to finish the work day and take care of Eli.

Extra special thanks to my wonderful wife, who stayed calm and focused and, as always, followed her instincts and did what our baby needed.

Much love,

Adam

Pics from this morning...

These were taken early this morning...the eyes at around 8 and the leg around 9:30. His condition started out with swollen ankles and two small red dots on the back of one of his knees. 10 days later, both legs are covered in the rash. His arms are about half that bad and he is developing some spots on his face. Please read below for more details. Sorry if the leg pic grosses you out!

Jaylon

For now, I'm just going to paste a copy of my last mass email for you to read. I will try to update daily while JJ is going through this....

Hello friends and family,

This email list is getting larger and larger, so I've once again included a recap at the bottom of this email.

Jaylon was in a great deal of discomfort all through the night, getting only short 10-15 minute bursts of sleep between fits of crying and thrashing around the bed. He finally fell asleep soundly around 3 and slept until about 7. When he woke up, his eyes were swollen shut. We took him back in to the doc's office at 9:15 this morning.

After some examination and questions, the doc advised us to rush him to the Emergency Room at Children's Mercy in K.C. so that he could be admitted today. (Otherwise, we would have had to wait for his appointment on Thursday)

His primary concerns are that Jaylon has two silver dollar-sized blisters on the insides of his thighs, just above the knee that are more severe than what is common of H.S.P. Also, he felt that the eye-swelling was something that needed to be monitored constantly by medical professionals and possibly treated with an antibiotic IV. Finally, JJ came down with an ear infection yesterday that just makes him more miserable and complicates his condition.

So, we dashed back home and ransacked the house getting Brooke and JJ packed up for a trip to K.C. and they are on their way as I type this.

JJ continues to maintain a very bright and cheerful spirit for the better part of every day. He sees this trip to KC as a really cool adventure to a hospital that is JUST FOR KIDS! (yeah!)

Please pray for healing for Jaylon. Please pray for peace, comfort and focus for Brooke. And please pray for guidance for JJ's doctors.

Thank you for the amazing support so many of you have offered.

I will be so glad when he comes home feeling better.

Much love,

Adam

RECAP:

Jaylon began to experience an odd rash, severe head cold and joint swelling/discomfort a week ago last Sunday. He was tested for a multitude of childhood diseases and finally diagnosed with H.S.P. (defined below). His symptoms have increased over the past ten days, so the doc prescribed a super duper antibiotic ointment for the rash, oral antibiotic for the ear infection and heavy dose Naproxin for the inflammation. The rash seems to be starting to clear up with the ointment, and the oral antibiotic should kick in today. Primary concerns now are eye swelling and blisters from the rash. The doc mentioned the possibility of Steven Johnson Syndrome.

Henoch-Schonlein Purpura

Classically, HSP causes skin rash, pain in the abdomen, and joint inflammation (arthritis). Not all features need be present for the diagnosis. The rash of skin lesions appears in gravity-dependent areas, such as the legs. The joints most frequently affected with pain and swelling are the ankles and the knees. Patients with HSP can develop fever. Inflammation of the blood vessels in the kidneys can cause blood and/or protein in the urine. Serious kidney complications are infrequent but can occur.

Symptoms usually last approximately a month. Recurrences are not frequent but do occur.

The prognosis for patients with HSP is generally excellent. Nearly all patients have no long-term problems. The kidney is the most serious organ involved when it is affected. Rarely, patients can have serious long-term kidney damage or an abnormal bowel folding called intussusception. Some patients have recurrences of symptoms, particularly skin rash, for months to a year after the onset of the illness.

Recent data show that HSP in adults is generally more severe than in children. Adults have more severe kidney involvement and can require more aggressive treatment. The ultimate outcome, however, is usually very good for both adults and children