Henoch-Schonlein Purpura (HSP)

Thank you to all of our family and friends that have prayed and supported us through the last several days. Here are some pictures to show you how our baby girl did through this ordeal.

This all started Tuesday evening....when I dressed her in her pjs at 7:30 and her body was fine. At 10:30 I changed her diaper and noticed some spots on her right leg and foot. I didn't like the look of them and got worried. She also had a hard time nursing when laid on her right side. I called my sister in-law and best friend thinking that she could help me talk through possibilities. I knew that with the late hour the best I could do was get through the night and take her to the pediatrician the next morning. She woke up at 7 am Wednesday and I took her pjs off to check her body. I was NOT happy with what I saw. Her right leg had more spots and her left leg, arms, and most scary were her poor ears. Her ears had so many spots on them they were bright red and swollen to two to three times their normal size, her right ear was the worst. Some spots were red and others were purple and bruise like and visibly under the skin. I called the doctor and got her in as soon as I got Olivia off to school. I also had Dylan looked at because he also had a strange rash on his right leg. It looked nothing like Ashlyn's but too coincidental for me to not have looked at. Also Dylan and Ashlyn have both had runny noses and are both prone to ear infections. Yes, Ashlyn had one in her right ear and Dylan was fine. (To explain Dylan's rash I had the pediatrician and the ER doctor look at him and neither were at all concerned with his rash because it would Blanche when pulled among other things.)

Okay, so I'm at the pediatricians office where I'm seeing just whoever is there that day because mine had the day off. SO NOT HAPPY THAT HE HAD A DAY OFF ON THE DAY I NEEDED HIM. He has had experience with HSP and probably could have saved us A LOT of extra testing. Anyways, this lady had NO IDEA. They took a strep test and I was told she was going to go get her camera (that's never good). Then literally 2 minutes later she said you need to take her to the ER because I want blood work down on her STAT!! I was literally kicked out of the office and told to get to the ER immediately for this blood work. I called Tom and asked for his help because I have Dylan with me. When I get there I am greeted by several doctors in masks and gowns and taken to a room were Ashlyn is undressed and they are drawing urine, blood, and putting in IV in as quickly as they can. Unfortunately they kept losing her blood vessels and had the must horrible time getting blood or an IV put in. It was HORRIBLE!!!! I was crying so I could barely speak to her but I could kiss her. Tom arrives during the IV attempts and goes white literally within a minute of being in the room and had to go sit down and get better. Dylan went over and patted Daddy's back to help him feel better. Dylan did a very good job of staying in a chair and watching cartoons during all this. I think he knew he HAD to cooperate through this.

Finally finally I was able to pick Ashlyn up and they started talking to me. The doctors were very kind and apologized the whole time about how scary this was. Once they started talking they said that they were worried it could be a form of meningitis and if so it was very very important they get an antibiotic in her body as soon as possible because she would die within a few hours. If it wasn't then her ear infection would at least be treated. I was told we would know in an hour or two how serious things were. As we waited and Tom regained his strength we continued to get mixed news. On one hand tests were all coming back normal on the other hand they had no idea what was the matter with Ashlyn. The ER doctor started taking pictures on her iPhone and sending them to all of the specialists in the hospital she could think of and some even came to visit. More test were ordered and more tests came back normal. They decided we weren't critical enough anymore but they didn't know what was the matter so they sent us to PICU around 4 pm. At this point Tom had to leave to get Olivia from the school bus.

It was as we settled into the PICU that we heard HSP first mentioned. An infectious disease specialist came to have a look and she passed around a couple of possibilities and HSP was her first guess. We settled in for the night as Ashlyn's body continued to change. She had more spots, growing spots, swelling in her legs, feet, and hands, and throwing up. By morning her pediatrician (not on his day off anymore) came to see her in and took one look at her and said that's HSP. I was so exhausted from what we went through the day before I just cried and did my best to understand what he started to tell me HSP was and meant for our baby girl. So Thursday I spent the day trying to process what a diagnoses of HSP means.

Her weapon has I started to call it. She had to have her IV put in twice and both times she had to be poked several times. They wanted to be sure this one didn't come out so they put the biggest board on they could find. When she'd get mad or I'd change her diaper this board was like a weapon as you got near. This IV went bad too but luckily by that point they were done with it.

With a diagnoses of HSP they collected another urine sample but ordered all other tests to stop on this poor poked on baby girl. She was so happy to not be hooked to anything anymore. She had 5 cords hanging off of her for just over 36 hours.

Throughout this experience she developed a fear of any new face or voice. She would look for any new voice and WATCH them and if there were more then one person she did her very best to keep track of all the people around her. She would watch them and give them this most suspicious look like "what are YOU going to do to me?" Some of the nurses would smile and play with her but then they ultimately did something to her so yes her distrust was running very deep.

Just got her IV removed and told she was springing the PICU.
This wagon was the first time she would let me sit her down without crying.

SO happy to be out of the PICU and onto a calmer floor with more TOYS!!
They kept her for one more night and so we settled in for another night knowing we'd get to go home in the morning.

First time Ashlyn has ever pulled herself up. She was so proud. Mommy realized very quickly I was going to have to raise the crib rail all the way up.

Visiting Baby Sis we took her for a wagon ride and saw the fish.

LET ME OUT OF HERE!!!!!
We got home Friday morning and crashed!!!
Ashlyn was so happy to be home and Olivia and Dylan were so happy to have us back.
Her doctor has checked on us several times and has given me his personal cell phone number. You never want to have to be on a personal cell phone basis with your doctor. I am to comfort her and observe her through the weekend and take her in to the pediatrician's office on Monday for a check up and another urine test. They are checking her kidneys with these tests because that is the most common complication to HSP. These check ups will be weekly for the foreseeable future.

Ashlyn this morning. She had a very bad morning were she was completely out of it. Her eyes were open but she was completely lethargic and threw up. After that she fell into a sound sound sleep and slept for another couple of hours. When she woke up she was happy and active and has stayed that way for the rest of the day. Her doctor said there would be ups and downs.

So today as things settled down I did some looking on the internet and this is one of the sites I browsed. The testimonials that were at the end of the articled SCARED me and I had to stop reading. Her pediatrician warned me that when I read things on the internet and they scared me to stop so I did my best to stop reading.

My source MedinceNet.com

Henoch-Schonlein purpura (HSP) is a form of blood vessel inflammation or vasculitis. There are many different conditions that feature vasculitis. Each of the forms of vasculitis tends to involve certain characteristic blood vessels. HSP affects the small vessels called capillaries in the skin and frequently the kidneys. HSP results in skin rash (most prominent over the buttocks and behind the lower extremities) associated with joint inflammation (arthritis) and sometimes cramping pain in the abdomen. Henoch-Schonlein purpura is also referred to as anaphylactoid purpura.

What causes HSP?

HSP occurs most often in the spring and frequently follows an infection of the throat or breathing passages. HSP seems to represent an unusual reaction of the body's immune system that is in response to this infection (either bacteria or virus). Aside from infection, drugs can also trigger the condition. HSP occurs most commonly in children, but people of all age groups can be affected.

What are symptoms of HSP?

Classically, HSP causes skin rash, pain in the abdomen, and joint inflammation (arthritis). Not all features need be present for the diagnosis. The rash of skin lesions appears in gravity-dependent areas, such as the legs. The joints most frequently affected with pain and swelling are the ankles and the knees. Patients with HSP can develop fever. Inflammation of the blood vessels in the kidneys can cause blood and/or protein in the urine. Serious kidney complications are infrequent but can occur.

Symptoms usually last approximately a month. Recurrences are not frequent but do occur.

How is HSP diagnosed?

HSP is usually diagnosed based on the typical skin, joint, and kidney findings. Throat culture, urinalysis, and blood tests for inflammation and kidney function are used to suggest the diagnosis. A biopsy of the skin, and less commonly kidneys, can be used to demonstrate vasculitis. Special staining techniques (direct immunofluorescence) of the biopsy specimen can be used to document antibody deposits of IgA in the blood vessels of involved tissue.

What is the treatment for HSP?

While HSP is generally a mild illness that resolves spontaneously, it can cause serious problems in the kidneys and bowels. The rash can be very prominent, especially on the lower extremities.

The treatment of HSP is directed toward the most significant area of involvement. Joint pain can be relieved by antiinflammatory medications such as aspirin or ibuprofen (Motrin). Some patients can require cortisone medications, such as prednisone or prednisolone, especially those with significant abdominal pain or kidney disease. With more severe kidney disease, involvement called glomerulonephritis or nephritis, cyclophosphamide (Cytoxan), azathioprine (Imuran), or mycophenolate mofetil (Cellcept) have been used to suppress the immune system. Infection, if present, can require antibiotics.

What is the prognosis for patients with HSP?

The prognosis for patients with HSP is generally excellent. Nearly all patients have no long-term problems. The kidney is the most serious organ involved when it is affected. Rarely, patients can have serious long-term kidney damage or an abnormal bowel folding called intussusception. Some patients have recurrences of symptoms, particularly skin rash, for months to a year after the onset of the illness.

Recent data show that HSP in adults is generally more severe than in children. Adults have more severe kidney involvement and can require more aggressive treatment. The ultimate outcome, however, is usually very good for both adults and children.

Henoch-Schonlein Purpura At A Glance

• Henoch-Schonlein purpura is a particular form of blood vessel inflammation called vasculitis.
• Henoch-Schonlein purpura frequently follows an infection of the throat or breathing passages, but it can be induced by certain medications.
• Henoch-Schonlein purpura causes skin rash, pain in the abdomen, and joint inflammation (arthritis).
• The treatment of Henoch-Schonlein purpura is directed toward the most significant area of involvement.
• The prognosis for patients with Henoch-Schonlein purpura is generally excellent.