4 year old daughter HSP, please help
Posted , 9 users are following.
Hi.
My daughter was diagnosed with HSP on 7th jan 2017. She had a horrible angry rash on her legs and feet so we rushed her to A&E thinking meningitis. We were told after urine tests and blood tests that it was HSP, all very confusing.
She had blood in the urine but not visiable to the eye. She had to have weekly BP checks and numerous blood tests
On 12th Feb she started to urinated blood. Very scary. We rushed her to A&E where they discovered her protein was 4+ and blood was 4+ so she had a 4 day stay at hosp.
It then happened again yesterday, she's now vomiting.
We are being told a million different things and I feel no one is really helping her. I can't sleep for worry. She's only little and she has no life because of this. She hasn't had the rash since jan but her BP has crept up, she had an ultrasound done showing a light area on her kidney and protein at 3+ and blood still off the scale.
Please someone help and reassure me. I just want her to get better
0 likes, 45 replies
jeanna91587 samfortune
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samfortune
Posted
Thank you everyone this has all been very informative and I now have a good list of questions when I see the kidney doc on Tuesday. It's just so hard to sit and watch her be so badly affected. I miss my happy go lucky girl and I just want her back x
katerina12097 samfortune
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Hi, sorry to hear about your little daughter.
My son was diagnosed with HSP this January. We are in Norway now. The doctors here as well don't prescribe any medication unless the kidneys are involved. First couple of weeks he couldn't walk both hands and his legs were affected but we only gave him paracetamol. When he developed oedema on his back they prescribed ibuprofen 4 times a days for a week to reduce the swelling and only when his urine test showed that he had a protein +3 and blood then the doctors said they have to start prednisolone treatment as the risk of kidney damage much higher than a side effects from steroids.
ussually they weight a child and it should be the dose specific for the child's age and the weight.they start with a higher dose and then tapper it off.
Maybe you can ask your doctor for the prescription and the plan.
samfortune katerina12097
Posted
Did your son get the steroid due to the protein in the urine? My daughters protein has been at 4+ then back down then back up. She also has visable hematuria.
She has no swollen joints. She had one night of tummy pain. She's had no rash since start of jan. She's had 4+ of blood from the beginning
katerina12097 samfortune
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Yes, only when he developed the protein in urine +3 and the blood. Before he had +1 and he had a rush on his legs and arms , and stomach pain and arthritis they didn't give him anything except the paracetamol and ibuprofen. When protein started to raise they decided on prednisolone. We were referred to kids hospital where they saw the cases like that before.
samfortune katerina12097
Posted
I struggle to understand why my daughters doctors won't give her anything she has been 3+ Monday Tuesday Wednesday this week and 2+ today. Half the week last week she was 4+
Since Jan 7th she has been 4+ of blood in the urine everyday
I will be querying this asap with the docs. Thank you
katerina12097 samfortune
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I think it's not just a protein they measure .they check for the creatinine ratio as well and other factors. If your daughter had +4 and now it's reducing to +2 it shows that her body manages by itself.its a good news as it's decreasing.
samfortune katerina12097
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It goes back up though that's what I'm worrying about, it's so up and down I can't get my head around it
katerina12097
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my doctor says that the blood in urine can stay for quite a while as HSP it's when the vessels are bursting and obviously the blood would be but what they monitor is a protein as it shows them how the kidneys are filtering and importantly to see how they are filtering the creatinine( which shows if the kidneys are badly involved).
samfortune katerina12097
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Yea I need to find out more about the creatinine defo I'm not really well clued up enough
annasven samfortune
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1st I am so very sorry you guys are going through this. Secondly... General Drs don't know crap about HSP. Seek out a pediatric nephrologist and a pediatric rheumatologist. They are far more well versed in HSP. If she is experiencing high blood pressure and kidney involvement, leaving her be with no meds is NOT the answer. I was so sick of the pediatrician and ER Drs not knowing a damn thing and giving me mixed advice. I finally took it upon myself to seek a specialist. I'm in the states m, so I'm not sure how different things are here as compared to by you..... but thats my only advice. Seek out someone who knows about this disease! Prayers to you guys that you find some answers and treatment soon.
samfortune annasven
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Thank you so much for that. I 100% agree, docs here in the U.K also don't have a clue! Mixed advice every time I see or speak to them. Think that's what's driving me mad the most. I want one doctor to follow her condition through instead of a million different ones who can't even be bothered to read her notes!
Thank you for your advice x
harleycw samfortune
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I still recommend seeing an allergy/immunologist. This was the doc that knew right away what it was. I'm in U.S. Seems like most of this group may be in U.K. area. I dont' fault the doctors for not knowing. It's not common so it needs a specialist. What I don't accept is doctors not doing the research or referring to the correct specialist. Funny part is that my breakthrough was using some new ask a doctor app on my phone and I sent some pictures and described my problem and within 10 minutes I had a specialist say it might be HSP. Thank goodness for technology ! Now if we could only get that artificial intelligence working so they can truly know all the information and diagnose the millions of people with conditions most doctors can't possibly know as individuals. How are things going by the way?
samfortune harleycw
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Today has been a good day. Her protein in 2+ and blood is 4+ she's not in any pain. She is so so pale but her spirits are up. I'm just hoping to get to Tuesday withiut going downhill again and then she will see the kidney doc.
katerina12097 samfortune
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That's a good news. Hopefully she will be well soon.
katerina12097 harleycw
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harleycw katerina12097
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I would love to find the name of that program and I'll look it up on the internet. My background was engineering so yes I approached this as an engineer not a doctor. I just want to analyze the data
My college roommate ages ago was a doctor and was breaking records on many exams later graduating at Stanford them practicing for many years. He has done much research and wrote many papers. While incredibly smart I also approached him on my condition and he had no clue. My point is that doctors are smart. There is just too much information one has to know to diagnose everything correctly. At least the need to research given the symptoms and recommend the right specialists. Very interesting about avoiding chocolate and red berries. I'll look in to why that might be about the berries part.
rocky31676 katerina12097
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katerina12097 harleycw
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The program called in English" What's wrong with you" and it's on NRK channel .
harleycw katerina12097
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Thanks, I also found it under " DOCTORS VS INTERNET" The preview I saw had the people using internet diagnosed the lady correctly with Sjögren's Syndrome when the doctors thought it was diabetes. It seems like they have time to search the internet (3 people) and I'm not sure what the doctors have access to beyond their current knowledge but there are also 3 of them. Thanks ! Very interesting. I wish we had a show like this but it looks so popular many broadcasters are picking up the rights to it and to use the format.