they think my 10 year old has sarcoidosis

• By shadowtoonces
• Posted December 2, 2008 at 5:54 am
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First of all, God bless your little one. Children getting sick tears me up. My symptoms started like that. I have the huge lymph nodes (which the docs are thinking are being aggrevated my some odd immune or allergic response). I did fall over when I went to the ER, and that was from hyperventilating because I freaked because I coudn't breathe. Prednisone has been keeping me breathing, now we are trying to taper and switch to inhaled steroids (praying). My CT read that I had 50/50 of sarcoid or lymphoma and it turned out sarcoid and if I had to have one or the other, at least it turned out to be sarcoid. I know have another doc looking at the CT to see if it's in the actual lung tissue, but he says if it's just lymph node involvment, I shouldn't see anymore problems with sarcoid. I know alot of us have heard this and some haven't seen anymore symptoms, so think positive ( I know, easier said than done). I'm a nurse and I've seen kids bounce back from some major stuff, I've seen miracles with kids.
So it sounds like your little guy has the same symptoms that I do, but like I said, please don't feel frustrated because my nodes aren't shrinking yet, they are checking out things that could be aggrevating the process of these nodes not shrinking, like allergies or something. And I'm also 33 years old and partied like a rockstar so was never really kind to my body. Just keep on going to the docs and don't quit till you get an answer........I think that's what we are all doing.......Remember, according to my docs, this kind of sarcoid is the kind they have seen get better and never to be seen again and a flare up would be rare..........will be praying and take care, Dawn

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• By carleen
• Posted December 2, 2008 at 9:38 am
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Hi,

Sorry to hear this, he is so young. If per chance you are taking him back to the Childrens hospital in San Francisco, see if a Doctor Mustacchi is still on the list there he is excelent he is whom diagnosed me with sarc.

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• By blondinette_27
• Posted December 2, 2008 at 9:54 am
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Hi,

I am sorry to hear about your son. My 4 year old daughter has early-onset sarcoidosis. Her lungs are not affected so far but she has it in her joints. It was long before the doctors found what my daughter had and it was a very stressful and frustrating period for us. I will keep you and your son in my thoughts.

Take care

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• By micheleb
• Posted December 2, 2008 at 12:51 pm
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I am so sorry to hear about your son. Have any of the doctors given him anything to make his breathing easier? No one really likes taking steroids but in such a sudden onset and with such severe breathing problems, I would definitely ask about them to at least make him more comfortable for the time being. I have also heard that such sudden onset does typically have a higher instance of spontaneous remission, I hope this will be the case for your little one.

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• By JAYS_MOM
• Posted December 2, 2008 at 4:29 pm
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Thank you everyone. No, as of yet nobody has put him on anything to help him, but I'm guessing that at our appointment on 12/10 that may be what they do. I also will look and see if Dr. Mustacchi is still there. Thanks for all the help.

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• By Sonoran
• Posted December 3, 2008 at 9:00 am
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Good luck with your little guy! My husband is one of the lucky ones that went into spontaneous remission so hope that will work the same for your son! He has a great Mom who is out there advocating for him and reading and learning all she can! YOU are a great plus for him!

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