Thyroid involvement?

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My daughter is 6 now. She got diagnosed with HSP in March. Her nightmare of a story is already posted on her. After her two emergency surgeries we did weekly urine tests. They had been coming back okay with only a trace of blood here and there. This week she got an ear infection and ran a low grade temp. Her urine came back with blood and protein this week. Also, the doctor felt that her thyroid was enlarged and wants her to have blood work done to check that. When does the worry stop??? Has anyone had any issues with their thyroid while having hsp? Thank you! Also- have you had blood and protein show up but your kidneys still be okay? I'm freaking out a little here.

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  • Posted

    My son was 2 when he got HSP. For 2 years he had a little blood and protein in his urine. They told us not to let him have bananas and very little orange juice. Really, anything with vitamin K. His kidneys weren't majorly affected but he can't have any ibuprophen for the rest of his life due to the little kidney damage he got. His thyroid was not affected (it was his lungs) so I can't help you there but I can tell you that it was a rough 2 1/2 years but he is doing so well now, you would never know he had ever been sick. 

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    • Posted

      Sorry, also, there was always more blood and protein when he had some sort of infection. And, it cleared up some after the infections cleared up. And because he was on immunosuppressants, he regularly had infections, mostly ear. 

       

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    • Posted

      Thank you so much for your reply! It made me feel a lot better. Hopefully she showed some then because of her ear infection. We also cannot do ibuprofen. It was first recommended when she had all the joint pain, but every time I gave it to her, her purpura flared up terribly. Then one specialist told me never give it to her. Thanks again for sharing your story and making me feel better!
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    • Posted

      You're welcome. Its a scary thing and all the unknowns make it even scarier. We did find something that finally helped with the joint pain. We were giving him tylenol almost every day for 2 years and we finally found something that worked well and was all natural. I really don't want to come across as spammy on here, but since its through and MLM company, its hard not to. If you would like more info on it I can message you privately. Just let me know. smile

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    • Posted

      Yes, I would love to hear what you used! I'm all about all natural- especially now.

      Thanks again!

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    • Posted

      Hi! Praise the Lord, Coop is still symptom free and you would never know any of it ever happened. She is taking medicine now for an under active thyroid, but it's a tiny amount. The endocrinologist said it is not caused by her hsp, but related because it is an autoimmune disorder. I still worry about something compromising her immune system, but we have faith in the good Lord and pray, pray, pray. She is very happy and healthy at the moment and we pray it continues! How about your little one?

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    • Posted

      We are just starting the awful journey and we are from Tennessee .My daughter is 5.  It has just been a nightmare. The bumps, bruises, and swelling are frightening. Urine for the last week and CBC is all ok. How long did this last with you guys? I just want to be a ble to know there is light. We pray and pray and then pray some more knowing that God is in control. How long did Coop have a rash? Thanks for replying. 
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    • Posted

      Poor thing sad.  It is so scary but there is definitely light coming. And as awful as it is now, there should be no lasting effects. Coops rash came and went for about 2 1/2 weeks. Same with the swelling. Then she had her surgeries and was put on a high dose of steroids during her two week stay in the hospital and I think those are what made her symptoms disappear. We haven't seen them since.  I no longer give her ibuprofen for anything. It could induce the bleeding. So even though it relieves some joint pain, it causes the bruising to come back and starts the awful process all over. I'll be praying for your little girl! Let me know if you have any other questions or need to talk!

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