About Us (Meredith's Family):


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 its dramatic roller coaster ride 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 have any problem with 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.



Meredith's StoryVIP-mail-area


Our daughter, Meredith, 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, Meredith wore a fancy dress and shoes to school for picture day. 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, Meredith's feet and ankles were swollen and she had what we now know was purpura all over her feet and ankles.  We thought it was possibly an infection from scratches from our new kitten and took Meredith to her regular pediatrician the next morning.


 

Dr. Gina looked at it thought it was either a parvo-virus (serious for Meredith, given her blood disorder) or HSP.  She sent us to the hospital for lab work and by Monday we had a firm diagnosis (Meredith 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, Meredith 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.



Meredith was admitted to the hospital and with IV steroids 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 steroids to make sure she could tolerate the oral steroids.  Meredith 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 the movie Groundhog Day.  Each time Meredith 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), steroids, 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 permanent damage.


 

Meredith has been out of the hospital now for about 15 days (knock 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 steroids at home.  Meredith has missed a ton of school and goes through emotions ranging from fear to anger to guilt.  She desperately wants to be "normal" again.  Meredith's five year old brother handled things amazingly well, but would burst into heart-wrenching 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 Meredith's legs.  While we clearly aren't done with this yet, we hope that the end is in sight.




***UPDATE, 4/30/09***


It's been a while - in fact, nearly a year - since we updated this particular part of the site. Meredith is now eight years old and in second grade - just about to finish second grade,  in fact.  Where does the time go? We were torn somewhat about whether to update this page,  since it is supposed to concern patients' and families' struggles with HSP, instead of being a place to simply share photos and general life stories. 
 

But we realized that part of what brings new families who are just starting to grapple with HSP here to this site is the search for not just information and community, but also maybe some reassurance that life will get better. We can't say this will be true for every sufferer of HSP, obviously. But if it brings anyone else some measure of comfort to see how things can turn out, then we're glad to share.
 

Meredith started really coming out of the woods in the fall of 2008. Spring and summer were awful; we felt like I'm sure many of you are feeling right now - frustrated, fearful, and not sure this was ever going to end. But thanks to the tireless efforts of a medical team which was not only truly great but also very caring, Meredith started tapering off her steroids and immuno-suppressant medications starting in the fall of 2008. We've added six new pictures below to the original gallery. The ones from during HSP speak for themselves, including the puffy face from steroids and the photos of the purpura. The last one of those is the close-up of Meredith's face, puffy from steroids
 

Some of the new ones are from a trip we made to San Francisco in early November of 2008 (the beach shots). Others are from Meredith's birthday and Christmas. The most recent, at the bottom, are from her Grandmother's visit in April 2009. You can see the difference in the puffiness of her face, how much thinner it is now than in the summer of last year.


One other sad note was that the steroid Meredith was taking, Prednisone, can sometimes have the side effect of clouding the lenses of the eyes. This happened to Meredith, unfortunately, so she had to have - at seven years old - cataract surgery, a procedure normally done on people ten times her age. In the picture from San Francisco of Meredith eating a lemon (I know, what kid does that?), you can see her right eye is very bloodshot as a result of that surgery. As a result, she now wears the glasses you see in the final pictures.


But like everything in the last year, Meredith has weathered this storm too, like a champ, and we are so thankful to have our girl back with us. We know how bad this can get, and that even as bad as it was for Meredith, it could have been worse. We are grateful that she is now a happy, normal girl again, and we want to tell all of you out there struggling with recently diagnosed HSP that you WILL pull through, in the vast majority of cases - even the cases that feel like they're never going to end.




Meredith's Photo Diary (click on any photo to enlarge)