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Freaking out here...

Discussion in 'Parents of Children with Type 1' started by tandjjt, May 10, 2011.

  1. tandjjt

    tandjjt Approved members

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    Tyler has been having back pain for over a week - got referred to a ped orthopedic yesterday but honestly, I just figured he had pulled a muscle and maybe needed some muscle relaxers or something... turned out that it may not be so simple.

    Dr. examined and immediately became suspicious of him having an infection between/around his vertebrae/spine, called Discitis. Its not very common but people with Diabetes are more "at risk" for this kind of infection and he also said being on the pump ("with a foreign object always inside him") and all the other pokes does makes for an easier way for bacteria to invade through the skin (like we need to worrry about something else, huh). :cwds:

    We are currently waiting on the contrast MRI to be approved by BCBS and it has been scheduled for tomorrow since we should have their blessing by then. If the suspision is confirmed, he may wind up in the hospital for treatment with IV antibiotics - the very strong kind and sometimes combined with one another for best results... they could also elect to biopsy the area to grow cultures to id the specific bacteria so they can make sure they hit it with the best kind.

    Discitis is a particularly strange combination of inflammation and infection that can be difficult to diagnose and treat. Here is a link to some info - not much out there since its not very common but this kinda tells the story. I didn't even know such a thing existed until yesterday - ugh...

    http://www.reconstructivespinesurgery.com/downloads/spinal-osteomyelitis.pdf

    Oh and can't help but wonder about the IV prep recall... esp when discitis can start and grow for quite some time before symptoms show up... and ALL our boxes in my stash were the recalled ones and we had some of the alchohol preps that were recalled too. Hmmmm...

    I hate not knowing - I hate to see him hurting - I hate that his life supporting treatment could lead to something like this- I hate having to wait for an insurance approval for the MRI... I HATE Diabetes!!!
    My head is spinning and may quite possibly EXPLODE!!! :eek:

    OK - I'm done. Really trying NOT to freak but its catching up with me rather quickly today... :(
     
  2. hawkeyegirl

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    I've never heard of this! I'm so sorry that Tyler is going through this, and I hope the treatment is quick and effective.

    Take care.
     
  3. 5kids4me

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    Oh, I am so sorry! How frustrating to have to wait on the insurance approval....I hope you get answers and he gets relief soon.
     
  4. Christopher

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    Or it may not be Discitis at all. I know it is hard not to worry, but all you have to go on right now is a Dr's hunch. It looks like this is a very rare disease, I am hoping it is not bad news. I am also skeptical that using an insulin pump would be a factor in getting this disease. In the several other articles I looked at, diabetes was not even mentioned. I will leave you with this quote about the disease:

    "However, with timely, accurate diagnosis and appropriate aggressive treatment, the prognosis is usually good."
     
    Last edited: May 10, 2011
  5. Becky Stevens mom

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    Terry, Im hoping and praying that that is not what it is:(
     
  6. Beach bum

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    Wow, I've never heard of this. I hope everything turns out ok.

    Question, have they taken him off the pump so that his body won't fight off the foreign body, aka, a set and not the infection itself?
     
  7. Heather(CA)

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    Oh man, I'm glad you took him in. Keep us posted (((((HUGS)))))
     
  8. tandjjt

    tandjjt Approved members

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    I didn't take it that way when the Dr. said "foreign object" - hmmm... I really think he was giving reference to the fact that there is always something there puncturing the skin which just increases chance of bacteria entry... nothing was mentioned about taking him off the pump and I surely hope that discussion is not one in our future ;)

    From what I've read, the body doesn't always react normally to this type of infection - many times the white count isn't elevated and no fever or illness is present - just the back pain.

    I was floored as I've never heard of this before either - it is pretty rare - Gosh I sure hope it is something else - or I guess I should say I hope its something much less serious that is :cwds:
     
  9. Beach bum

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    Yes, hopefully it is something else.

    Please keep us posted, and hang in there.
     
  10. PatriciaMidwest

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    Sorry to hear this. I bet your doctor is just being careful, which is a good thing. I hope it is something else.
     
  11. etringali

    etringali Approved members

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    Go into closet. Shut door. Put face in hands and SCREAM! Have a good freak out. Then face world with a little more zen. HOpefully it's nothing. Sending positive vibes your way.
     
  12. momof2here

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    I hope that all goes well and the diagnosis is something minute. I do know, from experience, that back pain can be the result of hundreds of potential causes so, unless there is alot more to the hunch, take it slowly and realize it may not be that at all.

    I am hoping for the best for you and your son... and hope that you will come to a quick diagnosis of something very easy to remedy.

    Also, not sure if this has been mentioned but, when diabetes is mentioned within the context of something like that, I believe they are very much referring to type 2 diabetes, who traditionally suffer many other ailments along with that diagnosis and/or may have poor glucose control which feeds into the likelihood of diagnosis with other diseases/condition.
     
  13. Flutterby

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    Yikes, I hope its not it, but rather something simple.. Ugh on the insurance company.. they shouldn't have to wait for approval, if he needs and MRI they should approve it without having to wait!

    Keep us posted!
     
  14. lynn

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    As a parent of a son who just had two brain surgeries for a rare disease, I am grateful that your doctor is checking into this! It took a very long time to get a diagnosis for my son because it seems that doctors don't look past the "common".

    By the way, 1 in 200,000 seems pretty possible compared to my son's disease, which is 1 in 2,000,000. Somebody has to get these rare things.

    I hope your son doesn't have this. If he does though, I am glad you are blessed with a doctor who checked for it before a lot of damage occurred.
     
  15. tandjjt

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    Thanks for the concern for Tyler. His back pain and fever have been contributed to a virus since the MRI didn't show indications of discitis. Whatever it was made the low grade fever last 2 weeks + 1 day and back pain for about 3 weeks total.

    There was a shocking incidental finding on the MRI, however, especially when combined with him having Type 1 D. We had a full blown renal ultrasound after the MRI which confirmed he is missing his left kidney, a condition called "solitary kidney" or "renal agenesis". We see a pediatric nephrologist next week to cover all we need to be doing to protect the single kidney.

    http://www.kidney.org/atoz/content/onekidney.cfm
     
  16. dqmomof3

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    Wow...glad the condition wasn't what they thought it was but how, well, like you said, shocking, it must have been for you to find out he only has one kidney! Glad you can take protective measures now.
     
  17. CallMeSpunky

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    Sorry to hear that! I hope he makes a speedy recovery and they find its nothing serious.

    *It might be worth mentioning the iv prep recall to your doctor, I know of a few others who had mysterious infections following their use. Good luck.
     
  18. MrsBadshoe

    MrsBadshoe Super Moderator

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    While it wasn't discitis it did give you the heads up on his kidney situation. Something you probably wouldn't have know about for a long time but something I suspect is good information to have.
     
  19. Tuff

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    I would definitely call that a Godincidence! Who knows how many years would've gone by without knowing about the single kidney. Take care :D
     
  20. tandjjt

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    Absolutely right - while the information took our breath away, it is a good thing that we now know about the situation so we can take every precaution with his kidney that we can. I'm very interested to see what the specialist will have to say and recommend... also interested in seeing how the endo reacts to this information...:cwds:
     

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