What we thought were little red bumps starting out as the chicken pox last night took a very surprising turn today sitting in our pediatrician's office. Julia was diagnosed with an autoimmune disease called HSP or Henoch-Schonlein Purpura (if you know German). It is a disease where her blood vesicles swell. Her whole little body from head to toe is covered in bright red bumps that hurt and her joints (fingers and toes) can easily become inflammed and swollen.
Her doctor thinks that in about a year (the average time this autoimmune disease lasts) her little body will overcome it. There can be some very serious and even life threatening effects of this disease such as kidney disease/failure and her bowels can almost twist themselves into a knot (because the vesicles could swell so big inside her). She has a fever off and on, is very clingy and in the middle of playing she'll just lay down on the floor.
Could you please pray that she can remain as healthy as possible during this time. We're not sure how long the spots are going to last, most likely for several months. So you won't be seeing us in the nursery to greet you for a while and hopefully Jeremy and I can make it to church taking turns staying with Julia.
In less then 18 hours she went from no spots to this.
16 comments:
oh poor baby! I will definitely be praying for her! I've never heard of hsp, and it doesn't look like fun. It's tough to see sweet little Julia with a sad face.
O my goodness, that looks awful and I am so sorry for you all!! I will keep you all in my prayers and thoughts. Bless all your hearts!!
Oh My -- We'll definitely be praying for Julia. And, we'll definitely miss seeing you in the nursery and in Kindermusik.
poor little girl! we will be praying also!
Oh my, she looks miserable. Praying for you all.
Found you through the mac's. Of course I will say prayers for your sweet baby!
To encourage you: my godchild had this as a preschooler and she had a full recovery and has developed into a lovely teenager. There were months of worry and wondering, but the outcome was total healing and I pray the same for your Julia.
I too found you from the Macs..so sorry to see your little one suffering..I will be praying
Kim
How awful for her, and for you. Thinking of you all!
AFter you called we looked on-line but didn't find much so Al looked it up in his medical journals he has here at home. Oh, you know we will definitely be praying for Julia and for you both. We will miss her so much in the nursery. And you too!! I am sure we will be able to find someone to do check-in every other week for you. Praying!!
Holy Cow! What a lousy thing for all of you! You will be in my prayers. I'm so sorry for Jewels and for you!
We will put her on our prayer list and prayer that she can fight it off to make the books call her a miracle. I will prayer for you as well so that you both can stay rested!!
I saw this on Mystery Diagnosis. You should consider taking her to a specialist. Maybe a rheumatologist. Pediatricians don't see this every day and you want to make sure she is getting the right treatment or just to wait it out.
We will keep you in our prayers-just to let you know I found your blog through the Macs blog.
I will be praying for your daughter. I just read this tonight and I know how hard it is to watch your child deal with something painful. I'll be praying for you and you walk through this with her. precious baby feel better soon!
I have dealt with some blood issues of my own this year; and God has been so good. He is still in the healing business, and he loves the little ones most of all. I believe you will be a good witness to the medical staff as you continue in faith, and I believe your daughter will be whole sooner than expected. Grace and Peace (Luke 13:10-17)
-- DH
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