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Newly Diagnosed 3 year old daughter with HSP

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angela2012
angela2012

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

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  • ChristinaBev
    ChristinaBev angela2012

    Posted

    Hi Angela

    My daughter, 4yrs, just got this about two weeks ago. Her doctors did the same thing with the blood work and urine sample. She was given nothing for pain or swelling.

    It started with us going on a family hike Sunday. Monday morning, she had what looked like little mosquito bites on her ankles. No concern. Wednesday afternoon, she walked out of school and within a half hour, could not even walk! The swelling was unbelievable! And the bruising! And those little mosquito bites? Well, they were actually a severe rash going up both legs, to about her knees. So we took her in and the doctors did the blood work and urinalysis and mentioned it was HSP. We took her home, made her comfortable and gave her fluids.

    By that Friday, the swelling was going down, however, she had now had such severe pain in her lower back, we couldn't even touch her. Few more days go by, her other foot becomes swollen, bruised and the rash had spread. Few more days go by, one of her hands was swollen and painful to the touch.

    We are now on almost three weeks and the pain is gone, the swelling is gone, most of the purple bruising is gone, and the rash is barely visible.

    Her doctors have checked her urine three times throughout all this and it never showed any signs of blood so, so far, no kidney issues. We are to watch her really good for another 6 months in case it comes back. I have read that it sometimes does come back and is usually triggered by a cold. :-(

    It sounds, from reading on this site, that my daughter had a mild case, but I know one other person, an adult, who gets it all the time, and is usually very severe. One thing they told me, is it gets worse before it gets better, unfortunately.

    • ChristinaBev
      ChristinaBev

      Posted

      Good luck to you and if you need anything, we are all here for the same thing, so please ask away! I'm still educating myself on this horrible disease also. Hope your little one feels better soon :-)
    • angela2012
      angela2012 ChristinaBev

      Posted

      Thank you for replying. It was Wednesday of this week, I picked my daughter up from pre-school and she said her foot was sore. Thought nothing of it cause she was outside running around with her friends. After about an hour she couldn't even walk her ankles were so sore, then i had a look and noticed the swelling and red spots. So we had our drs appointments and yesterday (thursday) she was walking around fine, little swelling and more spots up her legs/buttocks. Now today swelling not as bad,  still a lot of red spots, little pain in her feet and now I noticed bruising around her ankles. We go back for more blood work/urinalysis and another appointment with paediatrician this coming week. I really hope this  a very mild case and does not get any worse then  is now!! Thanks again for your response
  • steph76194
    steph76194 angela2012

    Posted

    Hi Angela,

    Sorry to hear your daughter has caught HSP.

    My daughter was 11 nearly 12 when she developed HSP post severe respiratory infection. She is now 13 and it has been a rocky 14 months. She had the rash very badly initially, protein and nephritis in the kidneys, swollen joints and stomach pains. She has been fairly weak subsequently for the last 14 months...sport was out of the question and she has missed lots of school. In feb half term she had a very bad relapse....this time no rash but chronic fatigue and excruciating stomach pain. 5 weeks on and she is slowly getting better. The hospital rushed a scan through and discovered nasty shadows on her bowel...they think HSP has caused Mesenteric lymph adenitis...basically lymph glands have become extremely inflammed due to the HSP . It has been a nightmare....and actually her condition is worse than the original onset of HSP all those months ago. I can only hope things will improve but i think through my research that HSP is alot more vicious and aggressive than the consultant ever stated in the beginning. It would seem the younger the sufferer the quicker the recovery...certainly the onset of puberty in the mix has made the situation much worse for my girly.

    Every case is individual some get it worse than others...just be aware that everything has to slow down to allow a full recovery.

    Best of wishes to you and your daughter for a speedy recovery. X steph

  • Cinders68
    Cinders68 angela2012

    Posted

    Hi Angela

    Sorry to hear about your little one. As I have researched the younger you are the quicker it seems to go and the simptoms are not as bad as teenagers. Still is not a pleasent virus.

    My daughter has had HSP since last September. She is now off the steroids and MMF and the water tablets since mid feb. The HSP came back full force however since 24th Feb she just has chronic fatigue and muscle pain now and again. She has just got her period after 8 months. She still has +4 of blood in her urine and +4 protein an albumin of 30 and creatin around 60 She has missed so much of school as her concentration was serverly imperred. The school are great and very understanding. Although with all the drugs she has put on 20kgs the drugs have not helped to supress her imune system. Any further drugs will give her instant diabetes and guranteed kidney failure on the bright side the HSP may be eradicated! As you can imagine my daughter would prefer no meds and hopes HSP will die on it's own and the kidneys filtration system will eventually sort it's self out and if not she will still have to have a kidney transplant but at least the doctors have not brought this on. My daughter is fed up of being a human guinea pig. My only problem with HSP is my daughter for the past 8 months still regulally vomits. She has had a camera and a biopsy but they can't understand why at least once or twice a week she is sick and it wipes her out for 48 hours. We are back at GOSH 7th April for more bloods to check if her creatin and albumin has stabalised and keep the trial and error of toxic drugs at bay.

    • angela2012
      angela2012 Cinders68

      Posted

      Oh wow, your daughter has had it hard for sure! Hope things will turn around for her! How old is your daughter?
    • Cinders68
      Cinders68 angela2012

      Posted

      She was 13 when it started and now 14. It's such a horrid virus with no cure and no meds help it. The meds GOSH are tring to trial with her are to try and find out which part of the imune system is actively atacking her and try to shut it down, however the side effects and their outcome are worse, but as her doc said he doesn't want to be seen as not doing anything and has constantly said he has no idea if they will work and this is just trial and error. There is no confidence given to her only the facts of the drugs side effects and their ultamate end results of kidney faliure! There is no light at the end of the tunnel! It is heart breaking to watch and be helpless to do anything. As a parent you want to help but when there is no hope from a consultant it is really hard to stay upbeat and happy, but I do and I stay as positive as possible for her sake she is too young to give up!
  • Michelyn9
    Michelyn9 angela2012

    Posted

    Hi! Michelle and my son Anthony was diagnosed with HSP at four years at two months old. He had one outbreak and did not spread to his kidneys. About two weeks later she had another outbreak on his skin, but nothing in the joints or kidneys. He has been urine testing every two weeks since December 2015, we have had false positives that have been scary, but nothing for real. Now our dr believes we will see signs of it attacking the skin or joints before it goes to intestins or kidneys, so we watch and stay vigilant. He carries on normal activities and life is good.

    When I was in the stage you were I was afraid to breath, that something really bad would follow up with this diagnosis. Now I consider ourselves lucky about this diagnosis coming about so quickly and that it was nothing more!

    Email me if you want to chat- our kids are close in age smile.

    Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

  • lucynewas
    lucynewas angela2012

    Posted

    It will take about 6 months of monitoring. Hopefully she will be free if most of the side effects, but have a read through this forum for lots of helpful information on how to deal with it.
  • ramonai
    ramonai angela2012

    Posted

    I was 15 years old when I had HSP. All the usual symphtoms and an intestines surgery ...not a pleasant experience at all. The good thing is that it has never come back, no side effecs besides the surgery and I have an absolutely normal life: I practice sport, I hike, I gave birth to a child. In my opinion, the life style of former HSP patients is very important: to eat well and only healthy food, to practice sport, to take care not to have so many flues, to eliminate chemicals as much as possible, to have enough sleep...I even now experience tiredness sometimes and I can not explain it because I don't have a very stressful life or job. In my opinion HSP is sometimes just a sign that your body is giving in order to slow down...Unfortunately is such a painfull disease and the psychological consequences are so many. Even after 18 years of normal life I have nightmares about it...
    • Cinders68
      Cinders68 ramonai

      Posted

      Wow..... I say this as it has just occoured to us that my daughter's common denominator throughout this HSP has been her constant vommiting before during and up to 10 days ago.

      We realised that usually if she was sick she would eat toast, white bread as I was brought up with the saying "you can't throw up on toast" the common denominator has been white bread. We have stopped white bread completly.

      We have worked out that it is not the gluton or the flower but the yeast. For the past 10 days no vommiting. We are back at GOSH next week and will find out what alerhy tests can be used to confirm our theory.

      Supprising the 8 weeks we spent at Oxford John Radcliffe and the food diarys we kept, the gastro team never suggested this. An camera down her throat, genaral anasthetic nd biopsy yes, but no obvious alergy tests were thought of which would have been quicker and much less evasive!

  • amina69900
    amina69900 angela2012

    Posted

    My son was diagnosed with hsp in febuary this year and he had swelling to legs, knees, ankles and hands/wrists as soon as 1 swelling went another started and rash was quite bad also. I thought all was good in past fortnight as everything seemed to have cleared and last night i noticed swelling again to his knees and rash as started back up. sad
    • Cinders68
      Cinders68 amina69900

      Posted

      So sorry Amina how old is your son? HSP comes in waves. Just when you think this horrid virus has gone and life seems a little better it comes back. My daughter has had sveral waves over the past 7 months.

      If I could I would post some pics. I have kept a photographic diary as most doctors have not seen HSP and ise your kid as a guinee pig to show other doctors. My daughter was fed up with teaching them so I would just show them pictures. This also saved the ignorent ones the need for constant touchong, pinching and proding!

    • amina69900
      amina69900 Cinders68

      Posted

      Hes 4 years old and yes i have also got pictures. Hes blood pressure is at a normal as he as it checked every week and daily urine checks
    • Cinders68
      Cinders68 amina69900

      Posted

      My daughter's blood pressure has been normal all of the 8 months she has had HSP but her Urine and Protien have always been +4. However as they don't know if she has +20 or +5 it is impossible to know if she is getting better apart from blood tests.
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