What is this awful thing.

Posted , 5 users are following.

My son is eight years old his started with a stomach ache on a Friday after school give him calpol as you do.

Saturday his ankle blew up then his feet then the rash took him straight to Norfolk and Norwich had a diagnosis in 40 mins HSP they put him on ward overnight because high BP. He come home Sunday and all I got was a leaflet thats it no explanation of what it was how to manage it nothing. He's not even two weeks in to this and it's ravaged his little body things have swollen I didn't even know could swell. On the wensday he screamed for five hours straight hospital wouldn't help trying to get to see a GP was a joke when finally got to see one useless my normally fit son looks like an old man. The only plus is he has no blood in his urine but he has stopped eating and is drinking very little. I cry every night I just want this to leave my baby.

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15 Replies

  • Posted

    To be perfect straight up with you...HSP sucks! It took my daughter 10 months to recover, and I'm still a royal mess when things happen to her even if they seem very little.

    I also say a few prays for you and son. I do hope he goes get better!

    Advice I can give with what I do know...

    1. For the stomach pains, give only Tylenol. Any meds with NSAIDS will make things worse! Tylenol is the only pain meds I can give to my daughter for the rest of her life. As long as he is a normal height/weight and no other additional health issues, you can give them adult strength per my three specialist.

    2. NOT drinking and eating is NOT good! If not drinking water at all, then the inflammation will get worse. Try adding some sports drink or juice to the water in order to give it taste. Once he starts wanting to drink, don't add as much since too much sugar isn't good at all. ALWAYS DILUTE THE JUICE. It did wonders when they couldn't put an IV in my daughter since she was completely dehydrated at the hospital. ALSO do research on foods that help or don't cause inflammation - many are water based products. Remove all pre-package food as much as possible - STICK TO FRESH MEATS, VEGGIES, FRUITS, ETC. This does include bread - bakery bread doesn't have milk product so less sodium and less of other things not needed.

    3. Keep notes on everything that has and will happen. Doctors like these notes - especially if they give a timeline.

    4. MOST IMPORTANT - FOLLOW YOUR GUT FEELING!!! If you feel like something is off, keep going to the ER!

    I will admit sadly, it wasn't until my daughter's numbers spiked to over 400% that the would do a kidney biopsy. Even the initial report didn't show how bad things were. When she finally did get the biopsy, they were able to prescribe the right medications that eventually led to her recovery.

    And to let you, the pain that he feels in his ankle(s) will go away but will come back up every time his body is fighting infection. Once a joint has had a certain amount of nerve damage to it, it's very sensitive to the body. My daughter got a staph infection 3x last summer after camp, and I had to go to the specialist to verify that all her renal functions were okay after her complaining about her hip and ankle really hurting her.

    Hope this helps!

     

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  • Posted

    It's a long road, but you'll get through it.

    Do what you can take care of him as much as you can. If you do the research, it makes it easier to know more how to care for him. And do what works best him and you. Not all tricks work on all.

    I would suggest getting the fluids as soon as possible. It will definitely help perk him up just a little bit.  It's more important for fluids than the food right now.

    I remember things by thinking of it the following ways:

    *Pain Med = Tylenol (no other choices available)

    *Fresh food only (as much as possible)

    *dilute juice with water (fill a water bottle 3/4 of the way with water and then add a juice - sports drinks are best if dealing with dehydration until they keep asking for drinks or start asking for foods)

    OH, I forgot to mention[u] ranitidine[/u], which is an Over the Counter (OTC) medicine for heart break or stomach acid. It works wonders with my daughter and many others I know that used it with their kids.

    Best of luck and prayers! It's hard seeing our kids suffer, but they have us to make sure they make it!

     

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  • Posted

    Sorry that your son has to go through this.

    You do need to feed him little, maybe fish/chicken. It will be a few days/week before it gets better.

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  • Posted

    I'm so sorry to hear you are going through this. It isn't an absolute nightmare. The good news is that usually there are no lasting effects. However, while it lasts is it terrible and so scary. My daughter had all the swelling and rashes and then began vomiting blood. Her HSP caused her to have intususseption and she had 28cm of her small intestine removed. That was in March of this year. She was 5. She is now a perfectly healthy (aside from a new thyroid issue we have taken care of) 6 year old. Other than the scar from her surgery, you would never know she had this awful thing. Fight through this. It will get better!!! We will pray for your little guy. 

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  • Posted

    Adam, I could've written this. My son is 9 and in exactly the same boat. He's in excruciating pain, he cant sleep and paracetamol and ibruprofen just don't touch it. My son was admitted over night on Sunday with high BP also and a terrible rash which is now blistering. We were back at hospital yesterday as his hands and eyes swelled also. Sent home as at the minute urine and bloods clear. He can't walk and is writhing in pain with burning and swelling in his ankles. I know exactly how you feel it's just horrendous. My son plays football and rugby daily and to see him struggling like this is unbearable. Praying for an improvement soon.

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    • Posted

      OMG that's exactly the same thing exactly. Been in hospital four times now last time by ambulance if the pain gets worse ring one they have to treat him. There better at pain control than we are plus it will give you a five minute break. My thoughts are with you if you need to blow off steam message me. Hope he will be OK.

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    • Posted

      Sounds like we have been going through exactly the same. We were admitted to hospital on Monday as the swelling was really bad and the rash was blistering. The pain has now subsided - thank goodness. We've since seen a dermatologist who has put him on steroids to try and help it along. Protein levels are high in urine too so we are being monitored for that. How is your son getting on? Hope he's in less pain.

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    • Posted

      His rash started to fade so did the swelling. But keeps coming back but not with the ferocity we first saw. He still getting stomach pain hospital seams to think he is constipated but I'm not so sure. I'll give it another day if nothing happens I'll start chasing them again. Was eating a bit but pain stops him I had an athlete for a son now he looks like a skeleton this is awful to watch. I'm glad your son seems to be on the mend fingers crossed 🤞

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  • Posted

    I know exactly how you feel. My son was so active and is so fed up he can’t plsy his sports. We have more blood tests, urine tests and a kidney scan on Wednesday. He seems much brighter in himself but rash still very much present. Really hope they are both on the mend now - this came to us like a thunderbolt. The internet says this is a mild illness, my experience says it’s anything but. My best wishes to your son for a very speedy recovery - hope he’s back to full fitness very soon.
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