About Us

When our daughter was diagnosed with HSP in March 2008, we had never heard of it. As we began to realize that this was going to be more significant than the standard colds, ear infections, and low-grade fevers that all kids get, we turned to the Internet for information.

There were many sites that had information, and most of it was very consistent, but many of them seemed to minimize the significance of the disorder. "Self-resolving within 4-6 weeks" they all seemed to say, and it felt dismissive.

As our case continued it's dramatic roller coaster road with multiple hospitalizations (seven as of this writing), we began to look for support from the parent perspective - groups where we could talk to others who had gone through this. To our amazement, we found virtually nothing in terms of US based support groups (note: we certainly do not that we have any problem with the UK, Australia or New Zealand groups, but given the substantial differences in health care systems and even medical terminology, we were hoping to find a local group, or at least something within the country that might offer support or tips for navigating the US system).

So we decided to build this site in the hopes that others might find it if they needed it.We are not doctors, and we cannot dispense any medical advice. We can suggest topics that you may want to discuss with your care providers. We can sympathize with your frustration, fatigue and worry. We can suggest coping strategies. And most of all, we can invite others who have gone through this to offer their insight as well. We hope you find this site useful and comforting.

M's Story

Our daughter, M, turned 7 in February 2008. She is a lovely, precocious, strong-willed, picky-eating, energetic girl. She was born with a blood disorder that caused her to need a transfusion at six weeks old, and another at age 3, but overall she was pretty healthy and very active.

On March 21st, Good Friday, she wore a fancy dress and shoes to school. She had had a cold the week before, but it was very minor and she was just about past it. She came home complaining about her feet hurting, and we thought it was the shoes.  When we took them off, her feet and ankles were swollen and she had what we now know was purpura all over her feet and ankles.  We thought it was possible an infection from scratches from our new kitten and took her to her regular pediatrician the next morning.
 
Dr. Gina looked at it thought it was either a parvo-virus (serious for her, given her blood disorder) or HSP.  She sent us to the hospital for lab work and by Monday we had a firm diagnosis (M had the full triad of symptoms: purpura, arthralgia (joint pain) and stomach pain).  She had no protein in her urine at that point, so while she immediately started on Predinisone, we thought it would be over shortly.  Boy were we wrong.
 
By Tuesday evening she had stopped eating and overnight began vomiting.  She was in awful pain, and began having bloody stools and vomiting blood and bile.  It was terrifying to see this happening as we were completely unprepared for how serious this might get. 

She was admitted to the hospital and with IV steriods and pain meds, she perked up amazingly quickly.  The doctor at rounds said to us on Thursday morning that she looked like a new kid.  We all agreed!  They sent us home that night.  By Friday morning, she was even more ill than before.  Back to the hospital for the weekend.  They decided to keep her for a full day after they discontinued the IV sterioids to make sure she could tolerate the oral steriods.  She seemed to do OK, so they sent us home again on Monday morning.
 
To keep this from being too redundant, I'll just say we felt like we were living a hellish version of Groundhog Day.  Each time she got sick, it seemed to be worse than before.  They began giving her morphine to control the pain, and eventually she was taking an immune suppressant, blood pressure medication, folate (to help with her blood disorder), steriods, GI acid control meds, nausea meds and pain meds as needed.  My seven year old had more scrips than my 60+ year old parents.  She did eventually have proteinuria, and a kidney biopsy confirmed nephrotic syndrome with permanant damage.
 
She has been out of the hospital now for about 15 days (know wood)  a record for her since this started almost 10 weeks ago.  It has taken a huge toll on the whole family.  She had two immunoglobulin transfusions and now has a PICC line in her arm as she continues to receive IV steriods at home.  She has missed a ton of school and goes through emotions ranging from fear to anger to guilt.  She desperately wants to be "normal" again.  Her five year old brother handled things amazingly well, but would burst into heartwrenching sobs for what seemed like no reason at all, but we know was his way of releasing his fear and stress.  My husband and I have managed to keep it together pretty well - we seem to have tacitly agreed to have our individual breakdowns on opposite schedules.
 
We would have been absolutely lost without the amazing support network of our mothers, my father, our brothers and their wives. our close friends in our hometown and bosses/work colleagues that couldn't be any better (thank you Wells Fargo!).
 
We had another appointment today and just yesterday we found new purpura on her legs.  While we clearly aren't done with this yet, we hope that the end is in sight.

M's Photo Diary (click to enlarge any photo)