Tuesday, February 19, 2008

Henoch-Schoenlein Purpura

Holy Crap-----My poor children. Scott and I really should have thought twice about bringing kids into this world together, although I don't think it would have mattered anyways. This fun new disease/virius has just rocked my poor little Zoie.

O.k. so her ear drum burst last week so she has been on antibiotics, yes again. Well she woke up Thursday morning crying saying her legs hurt, she layed in the hallway after the shower for about 45 minutes, I sat down with her and took off her towel and holy @#$*, she had red bumps all over her arms and legs. I called the doctor to ask what then thought. They were under the impression she was having an allergic reaction to the antibiotics that she has only been on about 10 times I swear. Anyway they ordered us a new one so I needed to go to Costco and pick it up. Throughout the day she just complained her legs hurt and she was really weak and not eating, I was thinking, I'm not so sure this is an allergic reaction. Anyway Scott got home and we headed to Costco I took Zoie to my brothers so she didn't have to go with us.

When we returned to pick her up as we put her in the car she starting crying really bad saying her leg hurt we lifted up her pants and on her leg it looked like someone hit her as hard as they could with a bat. IT WAS HUGE, AND DOUBLED IN SIZE. As you can imagine at that point we decided to call the doctor again and tell them about this. This is all with out them looking at her spots, well they still said give her benadryl for the swelling but you should probably take her in to the ER. Friday night at 5pm you can only imagine it was packed. Luckily we got in quickly due to it being an allergic reaction so her airway may have been closing. Once in and after the doctor had seen us it came to a screetching halt it was definaltely not an allergic reaction so the process was now very slow. They took samples of blood, not fun. And also she had to pee in a cup. 7 hours later we were home with a print out of this so we could read up on it:

What she has in an inflammatory response within the blood vessels and/or capillaries. It is seen as puple spots on the skin, joint pain, gastrointestinal pain, and kidney disorders occurring in children ages two to eleven. The cause is not known but is thought to be an abnormal response by the immune system .

What to look for:
Primarily, redness and swelling of the skin caused by congestion of the capillaries
Purple spots usually on the lower extremeties and buttocks byt may involve elbows, trunk, and face
Lack of energy
Low-grade fever, joint pains, nausea/vomiting, abdominal pain, diarrhea, bloody stools, bloody urine.

There is no treatment, it just has to run it's course which could be up to 3 months. I can give her motrin for the pain and that's about it. It resolves spontaneously with out treatment, but may recur several times before complete remission. Lots of rest and drinking lots of fluids. If we find problems in stool or urine then it becomes more serious, and it could get ugly. So of course as does every mother I think worse case senerio. So far no blood in stool or urine. We will have to check for these things for up to 2 years every month to insure no complications.

Complications:
Intestinal hemorrhage
Intestinal obstruciton
Intestinal perforation (hole in the intestine)
Death can occur from gastrointestial complications, renal failure, or central nervous system involvement, but these outcomes are very rare.

Prognosis
This usually lasts from four to six weeks but often recurs
Most children get well but some children can develop end state renal disease(kidney failure)


So as you can see it could be very scary and so I'm on high alert everyday checking poops, and trying to control the pain in her joints and making sure she doesn't get abdominal pain........I'm just so greatful for my sweet Zoie and wish there was more I could do for her. I'm sure everything will be o.k. She has had some blessings, and is under good care. We have a doctor check up on Thrusday to do more testing. Crazy the obstacles and trials that are put in our lives, just when I think everyone is finally getting better we get this..........I know there is light at the end of the tunnel and that my Heavely Father is aware of our little family.

I'm telling you if it's weird, were going to get it. I have a huge journal of the things my children, and even husband have had in their lives, it's quite interesting

Sorry such a long post, and I can't figure out spell check so sorry I'm horrible at spelling.

14 comments:

ThE RaSmUsSeN's said...

your kids have it rough! That's pretty scary, I hope she'll get better soon.

Mandi said...

And I thought I had it bad right now because of my husband. Is it bad to say Id rather it be him than the kids? AT least he understands whats going on. Tell little Zoie to get better soon and that we love her. Ill keep her in our prayers.

Prestwich Family said...

Holy Crap Amber! I am so sorry for Zoie and for you. What a scary, scary thing to go through. I hope she gets through this quickly and with no long term side effects. We will be thinking of you all!!

Jason Young said...

All I can say is UNBELIEVABLE! Holy Smokes!!

Mandy

Carrie said...

Amber - that is crazy! We hope Zoie begins to feel better soon and I'd recommend that you not read too many worst case scenarios on the Internet! Hang in there!! We love you guys!

Shalyse said...

Poor little Zoie, and your end doesn't sound too fun either-being stressed and having to check her poo all the time! I hope she gets feeling better soon, thank goodness for good doctors! We'll be thinking about you guys!

Caldwell's Snapshots said...

Wow! It is a good thing that Zoie is such a strong sweet little lady. You all are in our prayers. It does sound like you need a fun trip to the coast maybe when every one is feeling up to it we can met up & hang at the beach for the weekend.

Jessica said...

Poor Zoie! I am so sorry to hear about that! I know what it is like to have your kids sick, and how scary it can be! (And to be constantly checking poop, sooooo much fun, isn't it?)
Anyway, I hope she feels better soon.

Crystal said...

oh you guys! i am sitting here gasping as i'm reading this. i am so sorry for your little zoie. i am such a worrier and i panic whenever my kids get sick. we had some weird health things with brooklyn last year involving a lot of allergic reactions, and it scared us to death. we will pray for you guys for sure. hope she gets well soon! hang in there.

Anonymous said...

Thanks for calling me ahead of this post. Have you taken her to a specialist? Inflamitory diseases are handled by a rhumatologist. Don't forget Dad's wierd one...

Please keep me posted. Lots of love to little Zoie. And to you guys too.....

Mom Lashmett

Will & Cheyenne said...

Sheesh Amber. You weren't kidding! If there is ever anything we can do....

sorensonshome said...

Oh Amber how rough! Please call anytime if you need someone to take your kids real quick were just around the corner! We are thinking and praying for all of you

Alicia said...

Just saw the post. Let me know how I can help.

Anna said...

looking for information on HSP and found your site. I hope that by this time your Zoie is doing much better. My 7 year old grandson has HSP so I know what you are going thru. I just wish that we could do more than just control the pain and check poo.