Sjogrens :( Anyone deal with this?

Discussion in 'General' started by monie rose, Oct 1, 2014.

  1. monie rose

    monie rose Well-Known Member

    I am scared for my twins, Peyton and Eli. Eli has been diagnosed with that as of today and with Peyton being his identical twin he could have it too. [​IMG] It could also mean another autoimmune disease as it usually is associated with another like rheumatoid arthritis or lupus for example. 

    Eli has to see rheumatologist. But glad we have a reason why he kept getting infected saliva glands. 

    Oh about the disease itself....

    9 out of 10 patients that have it are woman, so him being male and only 8 years old is avery surprising diagnosis. 

    It causes the white blood cells to attack anything that produces liquids like saliva glands, tear glands, etc.

    It also can harm the liver, kidneys, thyroid, etc.

    It also can cause lymphomas. So very scary.
  2. ECUBitzy

    ECUBitzy Well-Known Member

    Oh my gosh! I am so sorry. I imagine you are overwhelmed and scared. 
    How are you coping? What will this mean for your son? Treatment or medication?
  3. cheezewhiz24

    cheezewhiz24 Well-Known Member TS Moderator

    I'm so sorry to see that your son is dealing with this. :(
  4. monie rose

    monie rose Well-Known Member

    ECUBitzy I have no idea what this means. i just hope he can get in to see the rheumatologist soon so i can have a ton of questions my husband and i have answered. 
    What is even scarier is it could be both twins. 
  5. kingeomer

    kingeomer Well-Known Member TS Moderator

    Monie, lots of love and hugs to you and your boys.  It almost sounds like myastenia gravis (where the immune system attacks the muscles) that is normally found in women but my Dad had it.  Will you please keep us updated on your boys and how they are doing?
  6. Mom2VLS

    Mom2VLS Well-Known Member

    My mom has it. I had never heard of it before her diagnosis. I hope the rheumatologist can provide some answers and help. I don't know much about it myself but can pass questions along. I know she found a group on Facebook that had been very helpful.
  7. MrsWright

    MrsWright Well-Known Member TS Moderator

    I have it as a form of mixed connective tissue disease (mine is lupus, sjogrens, and scleroderma).
    I'm so sorry you are dealing with this! The only symptoms I have had from mine is dry mouth, skin, eyes as most my symptoms are more related to lupus/scleroderma end (and thankfully are still mild compared to some!!)
    I hope you find a great rheumatologist and they answer all your questions but I would assume try would start with blood work to see what other possible autoimmune factors he may have. Very scary but remember we live in a very advanced medical world now too:)
  8. monie rose

    monie rose Well-Known Member

    Peyton doesn't have it. We are waiting on the referral for Eli to see a pediatric rheumatologist up in Madison which is out of our HMOs network. :( It could take several weeks for the approval and then a month or 2 for the actual appt. We are not happy about that but what can we do? 
    Thank you all of you! I am calmer now because of the responses from you and a few others! 
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