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Thread: Final Path Results

  1. #1
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    Default Final Path Results

    Almost all tests for Malachi are in - just a few gene tests are left and they are expected to be negative. All cultures (microbes of various types) were negative.

    The final path results say that he has Rosai-Dorfman disease which is very, very, very rare. It is a subset of histiocytic disorders and all of those disorders affect less than 200,000 people. It is benign and one of the symptoms is massive lymph nodes in the neck because a white blood cell called a histiocyte accumulates in the lymph node. Treatment only occurs if the accumulation of the histocytes causes issues with various organs or other body parts. It is self limiting and all swellings can go away on their own, come and go or not go away. The cause of this disease is entirely unknown. The ENT has called Children's and the University of Chicago for more information and to figure out who we should see next.

    That is all that I know right now.

    So good news over all but having a very rare disease of unknown origin is not really comforting.
    Jessica (33) and Ryan (33). Madelyn born August 5, 2009; Malachi born December 23, 2010 and Nathaniel born July 19, 2013. Lost a loved baby 02/29/12, 05/14/12 and 07/05/12 all due a serious allergic reaction to fabric softener.
    My Ovulation Chart , My blog about MCAD

  2. #2
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  3. #3

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    Worrying, but a good diagnosis to have when you look at the alternatives.

    "Any idiot can face a crisis; it is this day-to-day living that wears you out." -Anton Chekhov


  4. #4

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    Not ideal, but I'm glad that it's not some of those alternatives that you'd considered... and glad that you found a name for what's wrong. Some parents will search for a lifetime and have no explanation (and no way to explain to otehrs). If nothing else, perhaps you'll find support groups online or maybe by chance in your own community to help you to learn more, make decisions, etc. I hope that your little guy is recovering well from the surgery - and same for his stressed-out mommy and daddy. It has been a very hard month or two for you. Glad that you can move on to whatever's next!

  5. #5
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    I am very thankful that this is benign and that we have a name, if not a ton of information on this particular disease. This is just something that we'll have to continually watch and have to decide what type of testing we will want to allow for research purposes. There is sometimes issues with various organs (considered to be secondary effects) because of the accumulation of these cells and I'm not sure what type of monitoring he'll need. Thus far he has absolutely no symptoms of anything else going on so at this point it seems that only this particular lymph node is affected. Organ issues would be symptomatic.
    Jessica (33) and Ryan (33). Madelyn born August 5, 2009; Malachi born December 23, 2010 and Nathaniel born July 19, 2013. Lost a loved baby 02/29/12, 05/14/12 and 07/05/12 all due a serious allergic reaction to fabric softener.
    My Ovulation Chart , My blog about MCAD

  6. #6

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    Glad to hear that it's something that can be treated and kept in check, but I can understand how stressful it would be. We, as parents, never want to hear that there's a problem with our child's health, regardless of the severity! So glad to hear that it was benign and that you at least know what you're dealing with!
    ~Andrea~


  7. #7
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    ! So glad you have a diagnosis and really praying this syndrome doesn't cause any more issues for Malachi!

    Kup!
    Dh (39) Me (37) 8bio 1adopted, 14 angels






  8. #8

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    Overall good news, mama. I know it is not comforting to have DX of such rare disease but it sounds like one of the best scenarios. Hopefully it will not cause any further problems.
    KEVIN (6) & MATTHEW (4)

  9. #9
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    It sounds like a benign condition overall, so perhaps not what we'd all like to have heard, but good news anyway.

  10. #10
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    I am glad to hear it is one of the better alternatives - although I am sure it is still hard for you and your little man.

  11. #11

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    Good news, overall. I hope things go well from here out - keeping you guys in my thoughts and prayers.

  12. #12
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    Thank you all!

    The ENT talked with doctors at the two places with pediatric oncologists (Lurie Children's and University of Chicago) in the area and says that we can be seen at either one (there isn't a single pediatric oncologist in network so they will be out of network). We are to let her know of any insurance or scheduling issues and she'll take care of those. The insurance has to pay for us to see a pediatric oncologist. The oncologist will do various exams/tests/review tests to see if they agree with the diagnosis. They'll likely check out his whole body to see if any other areas are impacted. So, it will likely be a busy time for us. Both places are physically close but traffic is always going to be a bear (1 to 2 hour commute likely).
    Jessica (33) and Ryan (33). Madelyn born August 5, 2009; Malachi born December 23, 2010 and Nathaniel born July 19, 2013. Lost a loved baby 02/29/12, 05/14/12 and 07/05/12 all due a serious allergic reaction to fabric softener.
    My Ovulation Chart , My blog about MCAD

  13. #13

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    Glad you have a diagnosis and that it's benign. I hope all of your additional testing is as stress free as possible!



    6w3d132 / 9w5d180 / 13w3d155

  14. #14

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    I'm sorry about all of the worry and the additional testing. It must be so stressful for you all, especially Malachi. I'm glad the condition is benign, but still. I hope you get even more good news from the other doctors you'll see.
    -- mom to DD1 1/98 and DD2 10/09


  15. #15
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    I'm sure that as relieved as you are that it isn't any of your worst case scenarios, this is a daunting diagnosis. I don't know what to say besides I'm here if you ever want to chat and happy to hear this seems to be a relatively benign disease. KUP on what's happening!

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  16. #16
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    Me (40) DH (47) & furbabies * m/c 7/08 4/12 11/12

  17. #17
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    Glad to hear you've got a diagnosis, but I can imagine how scary just the term "rare disease" is when it's something that affects your child. I will continue to be thinking positive thoughts for you and Malachi!

    ~ Cassie, mama to Madison (8), Ali (4) & Wesley (new dude!)


  18. #18

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  19. #19
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    Well, I'm glad you at least have some answers now, and its benign.
    Jennifer


  20. #20
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    I think that you all can understand that I am relieved but unsettled. I don't really know how else to describe how I feel.

    We are going to go to Children's. My friend who is actually a nurse on the pediatric oncology floor has already talked to the attending (one of her favorites) that we will likely see and got the ball rolling for us. I need to make lots of phone calls today.

    The attending said that she has/follows several patients with this disease and they all are doing very well. She also knows people at CHOPs (Children's Hospital of Philadelphia) that she will refer us to once we move. She said not to look on the internet but if I must to go to www.histio.org. I had already found that site but I am a "responsible googler" and ignore all the random blog sites. There really wasn't much to avoid, though, since this is so rare.
    Jessica (33) and Ryan (33). Madelyn born August 5, 2009; Malachi born December 23, 2010 and Nathaniel born July 19, 2013. Lost a loved baby 02/29/12, 05/14/12 and 07/05/12 all due a serious allergic reaction to fabric softener.
    My Ovulation Chart , My blog about MCAD

  21. #21

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    Wow. I have never heard of that. Glad you are getting some more info today and it sounds like something that will not be a major long-term problem. But, what a hassle. I'm sorry for that.
    Editorializing, I can't help thinking about all the people who have the same, but never find out because of where they live, and do just fine. Sometimes access to technology is a double-edged sword.

  22. #22

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    glad that you got some answers. lurie childrens is a good place to take your child. they have been good to me so far.


  23. #23

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    I can imagine that you are unsettled. Its hard to know your lo has anything amiss. I hope you get good guidance from both hospitals.
    My 3 yo cuties!

  24. #24
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    My new middle name will be "Forms" it appears. A zillion have to be filled out and approved by various individuals before I can send anything to the new doctor and before the insurance will pay for squat. I imagine that we will be waiting AGAIN.
    Jessica (33) and Ryan (33). Madelyn born August 5, 2009; Malachi born December 23, 2010 and Nathaniel born July 19, 2013. Lost a loved baby 02/29/12, 05/14/12 and 07/05/12 all due a serious allergic reaction to fabric softener.
    My Ovulation Chart , My blog about MCAD

  25. #25

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    Ugh. I'm glad you now have a diagnosis, but I am sorry that it is something that is so rare and that will require more testing. Continuing to keep you and Malachi in my thoughts. How tough.




  26. #26

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    Quote Originally Posted by sunkiss View Post
    Glad to hear that it's something that can be treated and kept in check, but I can understand how stressful it would be. We, as parents, never want to hear that there's a problem with our child's health, regardless of the severity! So glad to hear that it was benign and that you at least know what you're dealing with!
    Me too


  27. #27

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    When DS1 was getting evaluated for large nodes, our Pedi mentioned, "other rare causes" of large nodes. I think she was referring to several disorders like this.
    Me 38, DH 38, DS 5/28/08, DS 7/6/10

  28. #28
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    Ok. So we have to go to University of Chicago. Fine. Whatever. Just next time don't make it seem like we have a choice. The thing is everyone is apparently so hot to get his pathology slides because there is "confusion over his diagnosis." Presumably that is on the part of the non children's hospital since they had never seen this before since the specialists haven't seen the slides yet. Apparently we are the only people that thought the diagnosis was final and the specialist visit was just to figure out what to look out for, if anything else was impacted, etc. But maybe specialists always have a wait and see approach?

    What a way to ruin a day! The pathology slides have to be there before Malachi can be seen so we have a tentative appointment for Thursday. Now, we have to figure out how to get the slides there because the records department said they don't handle that and to check with radiology (but gave us a wrong number). Why would radiology have pathology slides?

    I really need to get that letter written to this hospital. Apart from the ENT and the pediatric floor this has been one debacle after another.
    Jessica (33) and Ryan (33). Madelyn born August 5, 2009; Malachi born December 23, 2010 and Nathaniel born July 19, 2013. Lost a loved baby 02/29/12, 05/14/12 and 07/05/12 all due a serious allergic reaction to fabric softener.
    My Ovulation Chart , My blog about MCAD

  29. #29

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    ugh.... sorry to hear that they are still messing things up...


  30. #30
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    And we just got a copy of the referral which says his diagnosis is "malignant histiocytosis" so we have a call into the ENT.

    Now, maybe benign histiocystosis is so rare that they don't have a code for it. Or maybe that just needs to be further ruled out. He really does fit the Rosai-Dorfman Disease description...
    Jessica (33) and Ryan (33). Madelyn born August 5, 2009; Malachi born December 23, 2010 and Nathaniel born July 19, 2013. Lost a loved baby 02/29/12, 05/14/12 and 07/05/12 all due a serious allergic reaction to fabric softener.
    My Ovulation Chart , My blog about MCAD

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