1. Community
  2. Blood & Immune System
  3. Henoch-Schonlein Purpura

My baby boy

Posted , 4 users are following.

rosalie02
rosalie02

My 5yr old son was diagnosed yesterday. For the past two weeks he has been complaining that his stomach hurt (like painful cramps), I kept thinking he was constipated or maybe had the stomach bug (it was going around school). He also complained about his knees & feet hurting (I thought it was growing pains) He then started to develop spots (I again thought big bites) which later that day developed all over his legs, feet & butt along with a fever! I immediately took him to his pediatrician (thinking chicken pox). Luckily, the Dr knew exactly what it was & tested his urine which did contain blood. Therefore, he has to check-in weekly for another urine test. Of course, I was told it has to run it's coarse & Tylenol/Motrin is all I can give at this point. Later in the evening, his ankles & feet were so swollen he couldn't walk at all or bare any pressure, he cried on/off in pain for almost 2hrs last night! Breaks my heart to see my baby in pain and all I could do was hold him & place ice packs in his little legs rolleyes Ugh!!! He is a little better today but still has the swelling. Reading all these testimonies has me really worried because he is my little "sickling" and is always catching something. This waiting period is going to kill me!! Sending prayers to all of you who are going through this horrific ordeal.

0 likes, 12 replies

12 Replies

  • becky40790
    becky40790 rosalie02

    Posted

    Prayers to you and your son!

    The one thing you can do is keep an eye on him. If you have any "mommy's gut feelings" that something is wrong, you're best bet is to get him to an ER (not an urgent care - they aren't much help).

    If things keep getting worse, have the doctor refer you to a specialist. My daughter has two specialist who monitor her care due to the fact that it hit her kidney function in less than 5 days from when the bruising occurred. Luckily, she was already admitted in the hospital so they were able to do the biospy and find the right treatment plan for her.

    As far as the pain, they can prescribe a different pain medicine that is much stronger. Naproxen. She was given this for pain until the steroids were given to her. It made a big difference...she started getting out of bed on her after 24 hours of the Naproxen.

    • rosalie02
      rosalie02 becky40790

      Posted

      Thank you so much for responding! How did you know it hit her kidney function and things became worse....visible blood in urine? severe abdominal pain? fever? I will definitely take him to the ER when "mommy gut" kicks in!

    • becky40790
      becky40790 rosalie02

      Posted

      For my daughter, she did a complete 180 on us. She was fine one day, and then one evening she couldn't walk on one of her ankles. We let it go after urgent care told us she probably just pulled a muscle. I got a call from daycare two days laters that said I need to pick her up, and it all went downhill for two weeks for us. But to honest, we are still dealing with this disease. Part of her treatment plan started her off at 90 mg of steroids a day, and that was three months ago. We are hoping by December, we can be done with the steroid treatment and all other meds that are associated with her treatment plan.

      To be honest, she didn't show much shows of kidney failure through any of those symptoms. Since she was at the hospital, the general pediatric doctor ran blood test every morning. Based on those results, the numbers climbed and then went steady. The night prior to her second discharge, she just wasn't the same after a day of looking like she was doing well. She was walking and all of sudden, she couldn't walk anymore. Rely on the blood test since they give more information than you can ever imagine. We still count on the blood test before any changes are made.

      God bless you and your son! And yes, things get better eventually. But honestly I still get a sickening feeling when the doctor tells me not yet or we don' know her chances of this disease affecting her a second time. Thankfully, she is doing well with what medications she has, and the specialist are always looking out for her as individual.

    • rosalie02
      rosalie02 becky40790

      Posted

      Did the pediatrician prescribe the medications or did you have to see a specialists? Also, how long into the diagnosis was the medication started?
    • becky40790
      becky40790 rosalie02

      Posted

      In her case, the specialists prescribed most of them. She's currently on six meds, some to assist on the side effects of the steroids.

      She's been on for three months now with two more in the future. Steroids cause your body to go haywire mentally and physically. Let's say we can't wait until she's off. But our drawback is if we take her off too quickly, she'll suffer withdraw.

      My doctors tell us each patient is different so they deal with each differently. They also count on the parents to let them know info such as what is usual/unusual behaviors.

    • rosalie02
      rosalie02 becky40790

      Posted

      All this information is wonderful...again thanks you so much for chatting with me! What kind of specialists is she seeing? There are not very many in our local area, so I would need to get into the bigger cities. I live in West TX so the closest would be like Dallas or San Antonio which are both 5 hours away in different directions!
    • becky40790
      becky40790 rosalie02

      Posted

      We go to University of Michigan, which an hour away. She has a kidney and joint specialist. They work together in one clinic so we are both once a month at the same appointment. Eventually the regular pediatrician will take over the check-ups.
  • annielduffy
    annielduffy rosalie02

    Posted

    I know how you are feeling. My 2 year old (at the time) was diagnosed with HSP. His case was a little different because it was so severe. It actually affected his lungs and he started bleeding into his lungs and nearly died. Don't worry though, that is extremely rare. He had experts all over the world looking into his case and they all told us that it had only affected a handful of kids that way in all the research they had done. But, the joint pain was very similar. After he started coming off the steroids the pain got pretty bad again. We didn't realize at first what it was because it was a year after they started his treatment. Anyway, we found something that helped. We had been giving him tylenol every night for the pain and since we found the ointment we now use we have only had to give tylenol a handful of times in the months we have found it. Its called Deep Blue. Its an all natural product and its just like a lotion. I know that watching them go through the illness can be so hard because it is so painful for them and they miss out on a lot. This was one area we finally found some real relief and I was so happy to find a natural product because of all the other meds he was on. My son's experience was so different than most so I can't tell you how it typically plays out but I know that it is a long road. My son was on major meds for just over 2 years and he still has the joint pain now at almost 3 years. I will be praying for you! I know how difficult it is. 

    • rosalie02
      rosalie02 annielduffy

      Posted

      Thank you so much for responding! I feel so horrible for your son & am blessed to hear he survived all that trauma. God is Good and he will definitely get our babies through this! I will look on Amazon right now for the Deep Blue...and pray it helps him and his pain as it did your son! Again....thank you so much!!

  • lucynewas
    lucynewas rosalie02

    Posted

    My daughter improved with pharmaceutical grade pro-biotics and antihistamines. 
    • becky40790
      becky40790 lucynewas

      Posted

      I have heard a lot about the paharmaceutical grade pro-biotics lately, especially from those who suffer from ther autoimmune diseases. Did a specialist or pediatrician recommend this?
    • lucynewas
      lucynewas becky40790

      Posted

      The paediatrician said it would do no harm - there is little evidence because the pharma industry has no interest in funding studies.  As I say, it made her feel better and perked her up.  If you do an internet search for NHS probiotics, you will find the NHS review of pro-biotics.
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.