Save me from Post-Its!

Caitlyn has had polka dots for almost two weeks now. This is my post to document what is going on with Cait’s HSP. 

Caitlyn's HSP polka dots

What the heck happened?

• Saturday, May 16 we went to a concert and Caitlyn was watched by Jess, CJ, Mike & Sue. She didn’t want to eat anything and was very whiny. She was happiest sitting in bed just snuggling.
• Sunday, May 17 I noticed what looked like bruises on her shins. We visited Nana & Grandpa and she took a nap there. When she woke up, there were noticeable “hives” and bruises all over her legs. We went to an urgent care facility and received a prescription for antibiotics for folliculitis. The rash got worse and by evening, Daddy went to fill the prescription. Caitlyn would not move out of her stroller. She would not hold a sippy cup or let anyone put pressure on her legs. Her hands and feet began to swell and she cried in pain to her brother lightly bumping into her. Daddy came back and we went to the ER @ St. Rose hospital. They had a pediatric ER and took a CBC as well as a urine sample to confirm that all were normal, but gave us the diagnosis of HSP based on the joint pain and purpura (rash/bruises). We received a prescription of tylenol w/ codeine
• Monday, May 18 through Wed, May 21. We tried the tylenol w/ codeine once with what seemed to be the effect that it wired her. We kept her on an every-other dose of ibuprofen & tylenol around the clock. I would give her a few extra hours every once in awhile and she’d let us know she still needed it.
• Thursday, May 22 through Friday, May 22 – only 1 dose of ibuprofen each day when she “asked” for it.
• Saturday, May 23 – travel back home to AK – no meds
• Sunday, May 24 – drive to Willow – no meds
• Monday, May 25 – swelling in her hands & ankles again. Rash was really bad after having faded over the last week. Covered her entire buttocks. 2 doses ibuprofen.
• Tuesday, May 26 – drive to Anchorage and then to Soldotna – no meds
• Wed, May 27 – during sleep that night Caitlyn said her feet were owie without my asking her – 1 dose ibuprofen
• Thursday, May 28 – Learned that Aunt Mary Hendrickson has been dealing with something similar. Went to Dr’s office. Blood draw & request for urine sample. Jasmine tattoo for the best blood draw patient the nurses had seen in quite awhile. Prognosis is good, wait it out. Keep up with ibuprofen & tylenol as necessary. Go to ER for any acute belly issues or other scary symptoms. Woke up crying, 1 dose ibuprofen. Noticed the telltale “hives” that start a new outbreak.
• Friday, May 29 – HAPPY 2nd B-DAY! Soda mixed with water on the potty eventually gets a 2 year old to produce a urine sample! Blood draw results in a negative test for strep. 1 dose of ibuprofen @ bedtime, some swelling around sock line and evidence of new purpura “crop” with hives. She is increasingly irritable when things don’t quite go her way or if she bumps into anything – evidence that she’s still not 100%
• Monday, June 8 – While we had a few new dots over the last week, but they are all gone. No new ones for quite a few days and she’s even wearing shorts in public!

 Where the heck to find info on the Internet

• Johns Hopkins Vasculitis Center – best site so far
• HSP Support – just found this tonight

 What is it?

Henoch-Schönlein purpura (HSP) 

HSP is a condition of the vascular system that can affect all major organs and systems of the body.  The primary symptoms of HSP are a rash that may look like poison ivy, bug bites or bruises, significant joint pain and moderate to severe belly pain.

 While no one knows what causes HSP, it is frequently triggered after a common cold or virus.  HSP can be described as  a hyperactive response of the white blood cells in the immune system as it fights the cold or virus.  Once the virus or bacteria are gone, the white blood cells keep “fighting” and cause irritation, inflammation and internal bleeding in the patient.

 It is important to understand that while the preceding infection (the cold or virus) may be contagious, HSP is not contagious.  Other children cannot “catch” HSP, and it is not transmitted through coughing, sneezing or skin contact with the rash. 

 HSP usually resolves on its own within 2 months.  However, some patients suffer the effects of HSP for much longer periods of time.  These patients may recover and suffer repeated relapses.