Newly Diagnosed 3 year old daughter with HSP
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Just looking for some information for other parents of children with HSP. My daughter who is 3 years 9 months old has been diagnosed with HSP two days ago. She was complaining of sore ankles after pre-school and I noticed red spots all over her legs when I looked at her ankles. We decided to take a visit with our family Doctor, who was able to tell me that it was HSP but sent us for immediate blood work/urinalysis, and a immeditate referal to paediatrician the following day. The paediatrician was able to do a full physical and complete the diagnosis.
Bascially I am looking to see how this disorder progresses. She has the red spots on her legs, buttocks and back; swelling and brusing in her anlkes. It has only been two days since this has started and I'm wondering if this can get worse, or will she maybe just have a mild case? Possibly no affects to her kidneys?.... Thank you
2 likes, 19 replies
carlos06949 angela2012
Posted
Cinders68 carlos06949
Posted
Hi Carlos, so sorry your daughter has HSP.
My daughter is 14 and was diagnosed last September.
We as a family have worked out that my daughter had a sudden intollerence to yeast products which seem in a large part to have awakened/triggered HSP.
Although the Ige test was negative to yeast, it only shows positive if you have an immediate reaction like peanuts so Guys Hospital informed us.
My advice is write a food diary each day including times and each time she is sick find the common denominator.
The doctors spent from last September through to end of march this year blaming HSP for her constant vomiting even when on a high dose of steroids from Nov through to Feb this year.
HSP is like cancer, find the trigger and you can help kill the virus.
Since the end of march till now my daughter has only vomited once when we forgot to ask the ingredients used at a fairgrounds burger restaurant.
As HSP was allowed to survive for so long my daughter has developed Nephrotic Syndrome and gained 20kgs in water weight, one not so happy teenager.
She missed nearly a whole year of school to because of the vomiting, headaches and fatigue.
She still has the fatigue and headaches but since being off all meds since February, the lights are on and my child is alert and spending this summer holidays catching up with the years missed school work.
Good luck and do as much reaserch as possible.
To quote a recent consultant's comment to my family... Years ago if we were presented with a new illness we would be fighting over each other to research it, now if it's not on the computer with detailed instructions, we are not interested and we are not paid enough to bother!
Wishing your daughter a speedy recovery.
carlos06949 Cinders68
Posted
becky40790 angela2012
Posted
Hi Angela,
My daughter, whose five years old, was diagnosed with HSP with kidney complications as of June. It has been a tough road. My daughter started complaining out of the blue of her ankle hurting her, and we made the assumption that maybe she pulled a muscle while playing at the park. Thursday night, the next day, she still refused to walk on her ankle, and urgent care diagnosed her with the same assumption we had. The next day daycare called me since she couldn't walk again, but only to find bruises along both ankles. Took her home to rest and within four hours, the bruises overtook her legs and arms. When we got to the ER, they immediate said we need to admit her, and by morning we got confirmation on the HSP with severe dehydration. We were released on Sunday around 2pm, and within a few hours, she took a turn for the worse. We were back at urgent care, ambulanced over to the ER and readmitted into the same hospital due to respiratory issued (blamed on a secondary infection and her lungs were leaking fluid possibly from her IV take in the previous visit). After a day in PICU, they decided she was in the clear to go to a regular floor. By Tuesday, she looked like she could be released to go home, but that night things took a worse. Her urine test came back showing the kidneys were in high distressed. Her kidney specialist decided that morning that we needed to do her kidney biospy as soon as possible. By Thursday am, we found that the initial test were okay looking but by pm, an IV steroid was needed. We ran into complications with the IV, so by Friday AM, the doctors sent her home on a steroid treatment with a dosage much higher than one they prefer to do (90mg).
It is now almost two months after the fact, and we are still on a high steroid dose (40mg) since the test don't seem to want to favor improvement they would expect. Her life is now revolved around (3) blood pressure checks a day, and five regular medications she has to take in order to make sure her body doesn't reject the steroid or affect her blood pressure too much. She has a third blood pressure if her blood pressure goes over 120. We are on a second attempt of the original blood pressure medicine first prescriped when we left the hospital. Lisinopril has a side effect called Hyperkalemia (overdose of potassium in your body). She also only eats up to 1500mg of sodium a day due to the steroids...thankfully she likes healthy stuff and I've been creative with our meals as a family so she doesn't feel leftout. It's honestly no fun, but if we don't follow through with the medication, her low sodium diet, and blood pressure monitoring, she could still be at the hospital. With everyone keeping an eye out for her, we have been able to make sure if she has a flare up, we can get her into the doctors ASAP. I pray everytime we have a random urine analysis and blood draw that we get good results...last visits took a turn...hoping her test today comes out with positive news.
We got lucky enough that the kidney complications were detected early on and we took her to the best children's hospital though a hour away, but weren't lucky to enough to walk away without the kidney complications like others. This disease has very little known about it when it comes to why it affects the people it does. It's like HFM (Hand-Foot-Mouth) Virus...you don't know you have it until it's too late. As the doctors tell me, each patient is different. Some walk away with just the bruises, and some have to deal with the kidney complications. The only thing you can do is monitor her, and as long as the doctor(s) continue doing the blood work/urine analysis, she's in good hands. I hope your daughter gets lucky enough with a mild case. I wouldn't wish anything my daughter or my family faces today onto anyone else.