Dino Bites

Dino Bites

Living with HSP

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This has been a rough fall and winter in our family with both Kayanna and now Sarah suffering from HSP (Henoch-Schonlein Purpura).  I'm starting this page on our blog to keep a diary of their "adventures."  This is partly to keep family and friends posted, and partly so I can remember what happened when, for their history as well as matching medical bills with procedures.

Summer 2008
Our first encounter with HSP.  Sarah was diagnosed and had a miserable week.  I wrote about it on the blog (tag "HSP").  She received a priesthood blessing and made a remarkable recovery.

Late September 2015
Kayanna discovers what she thinks is a spider bite.

September 30, 2015
Kayanna's first visit with Dr. Fox (our fabulous pediatrician) about spider bite.  She was diagnosed with HSP and sent to the clinic for lab work.

October 6, 2015
Ben took Kayanna to see Dr. Fox.  She was in lots of stomach pain, and her feet were really swollen.  Again, I wrote a whole blog post about this.

October 7, 2015
Kayanna got labs done at Primary Children's Medical Center (PCMC).

October 9, 2015
She followed up with Dr. Fox.

October 13, 2015
Sarah and Kayanna both had blood drawn to participate in a study about the genetics of HSP.  Kayanna also had her first visit with the nephrologist (kidney specialist) at PCMC.

October 21, 2015
Kayanna's foot was swollen again.

December 1, 2015
Kayanna had been feeling pretty well, but she was scheduled for her second nephrology appointment.  I wasn't even sure she really needed to go, but the nurse recommended she be seen anyway.  We arrived early enough to do the labs before we met with the doctor.  He was very concerned with the results and scheduled a kidney biopsy to get a look at her kidney tissue.  He wanted to see if there was any permanent damage or scarring yet.

December 3, 2015
Kayanna had more labs drawn in preparation for the biopsy.

December 4-5, 2015
Kayanna was admitted for the biopsy and observation.  She had no complications from the procedure, and she enjoyed watching the first 6 episodes of Star Wars.

December 15, 2015
Kayanna had her third nephrology appointment.  Dr. Nelson was pleased that the damage wasn't worse, but her kidneys were still functioning at about 70%.  She was prescribed three medications to help prevent permanent kidney damage.

December 19, 2015
Sarah had been having a rough time with the cold that went through the family.  She had missed lots of school.  On this evening, she wasn't feeling well before bed.  Her feet were swelling for no apparent reason.

December 22, 2015
Sarah has a visit to Dr. Fox.  The swelling had diminished somewhat at the appointment, but by that night, Sarah was in lots of pain again.  Dr. Fox asked to be alerted if her ankles started to swell.

December 23, 2015
Sarah's ankle was very swollen.  When I told this to Dr. Fox, she requested another appointment.

December 24, 2015
Sarah had an appointment scheduled with Dr. Fox this morning, but the swelling had gone down enough that it was cancelled.

December 28, 2015
Sarah's next appointment with Dr. Fox.  There was a little protein in the urine.

January 2, 2016
What a way to spend Christmas break!  Sarah still can't really walk.  We bought knee-pads and a wagon this week to help with her mobility.  Unless something drastic changes, she won't be attending school on Monday.

Monday, January 4, 2016
Sarah starts complaining of stomach pain at dinner time.  Her purpura is looking much better, though.

Tuesday, January 5, 2016
Sarah visits Dr. Fox.  There is more protein in the urine.  We are now waiting to hear back from the kidney specialist.

Wednesday, January 6, 2016
Sarah can walk again!  Unfortunately her stomach still hurts a lot.  It's hard to get her to eat anything. She has already lost one pound (which she can't afford), so I'm worried.  Another call into Dr. Fox.

Friday, January 8, 2016
Finally got in contact with the nephrologist!  Sarah has an appointment with him along with Kayanna in a week and a half.  She also got a prescription that should help with her stomach pain.  Hallelujah!  Today I fed her lots of rainbow sherbet because it was the only thing she would eat.

Monday, January 11, 2016
Lab tests today for Sarah.  She's still in significant stomach pain and is missing her 6th day of school.

Tuesday, January 19, 2016
Sarah is still missing school due to severe stomach pain.  Today we got approval for her to be in the hospital/homebound program that will help coordinate her schoolwork with the teacher.  It's nice not to have to worry so much about keeping up academically and about all the absences.  K and S have appointments Thursday with the nephrologist.

Thursday, January 21, 2016
Kayanna's 4th (I think) appointment with the nephrologist and Sarah's first were today.  Kayanna's labs are looking better than before the biopsy.  Sarah's are the same.  The same as Kayanna's, I mean.  The doctor looked at the numbers and had to go ask the nurse to make sure she hadn't tested the same sample twice because the numbers were identical.  Crazy!  Sarah doesn't need a biopsy or any aggressive treatment at this time.  He did recommend Tylenol and an antacid for her stomach to see if that helps the pain.

Friday, January 29, 2016
The kidney nurse calls to tell us that the doctor has reviewed the notes and wants to start Sarah on Lisinopril.  It has been 6 weeks since her symptoms first started.

Tuesday, February 2, 2016
Sarah meets with her homebound teacher for the first time.  It has now been over 4 weeks since Christmas break, and she has missed it all.

Thursday, February 4, 2016
Sarah gets labs done again.

Thursday, February 11, 1016
Sarah goes to school but only makes it about 2 or 3 hours before she comes home.

Friday, February 12, 2016
Sarah goes to her school Valentine's Day party.

Wednesday, February 17, 2016
Sarah is released from homebound program because she attended 2 days of school.  Also, it is nearing the 6-week renewal mark, and she would need another note from a doctor guessing how long this will last.  No one knows.  We have to decide whether to send her to school for at least part of every day or just to pull her out and do an online or home school for the duration.  This afternoon I even got a truancy notice from the school.  Apparently doing the homebound program did not excuse the absences that occurred before she was enrolled in it.  So now I have to deal with that, too.

Sunday, May 22, 2016
I haven't done very well at keeping up with this; probably because nothing too drastic has changed.  Perhaps another time I will update with all the labs and kidney visits.  They have labs every moth and visits to the kidney doctor every 2 months.  Both girls' kidney results have continued to improve.  At this point, they are nearly normal.  Sarah is still having stomach pain, although it has greatly diminished in severity and frequency with the advent of better weather.  She still has bad spells where she just curls up into a ball.  She has gone to a GI specialist, and we are working through things with him.  We have no definitive answers yet.

2 comments:

Brandy said...

Yikes. I hate that this is happening to those sweet girls. Hang in there and let me know if I can ever help in any way.

Brandy said...

Yikes. I hate that this is happening to those sweet girls. Hang in there and let me know if I can ever help in any way.