4 Specialists Later…..

I’ve been meaning to post this for a few days now, but it’s been a bit crazy here this week. We are making some progress in figuring out what’s going on with Logan! First a quick update: last week we went into the pediatricians office for a few more blood tests. Those results showed anemia, and a low IgA, which led to more questions. The pediatrician spoke with oncology, who wanted us to visit with immunology to do a work up of Logans immune system. While there, they took a TON of blood and did a skin prick test on him for Candida.

Here’s what we know:

  • The issue with Logans lymph nodes being enlarged is a separate issue than what’s going on with his immune system.
  • They believe that Logan has a very rare medical condition known as Rosai Dorfman Disease (RDD). There have been 650 reported cases world wide since it was “discovered” in 1969. We will need a biopsy of his lymph nodes to confirm this diagnosis. RDD is basically where the body over produces a certain white blood cell, where they accumulate in lymph nodes. Most cases (70-80%) resolve on their own, and no treatment is necessary.
  • We know that Logan is anemic. His iron level was 17 (18-55 normal range), his UIBC is 421 (range 148-395) and iron saturation is 4% (15-55%). We are to increase his iron intake and retest in a few months.
  • In this latest round of testing we also learned that Logan’s IgA is really low. It should be between 21 and 111, with an average of 60 at 16 months old. Logan’s level is 14. IgA is the antibodies produced by the body to fight infection, bacteria, viruses, toxins and also comes into play when your body is having an allergic reaction.
  • While at the immunology appointment, we discussed how Logan has always suffered from yeast infections, whether it be oral thrush or rashes in his diaper area. The did a skin prick test on him with Candida, which came back positive. In the grander scheme of things we don’t know what this means.
  • We have been given the go ahead to use essential oils on Logan to boost his immune system and support his lymphatic system.

What we don’t know:

  • Blood tests have been drawn to see how the rest of his immune system is functioning. We don’t know if any of his other antibodies (IgG, IgM and IgE) have been affected, but should know more in a few days.
  • We don’t know why Logan is anemic. He eats an iron rich diet already, and takes a vitamin gummy with added iron in it daily.
  • We don’t know if Logan has an allergy related to Candida that is causing a low IgA response, or if his immune system has been compromised and he just can’t kick the yeast.

Throughout all of this, Logan has been such a trooper. He is loving life as always and is just a joy. He doesn’t seem to be bothered by much aside from the pokes at the doctor, and is just as rambunctious as ever.

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7 thoughts on “4 Specialists Later…..

  1. I’m so happy you’re starting to get some answers.. hopefully you’ll figure out the unknowns very, very soon. So sorry all of you have to go thru this but glad to hear the little one is hanging in there and is such a trooper!

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  2. What about celiac disease? That’s an autoimmune disorder where it messes with your iron absorption and other nutrient absorption and the inflammation could attribute to the IgA and candida. You can have celiac and be relatively symptom-free, so even if he doesn’t have stomach upset or diarrhea he can still have it. I would ask his doctor to test for it (you need them to be eating gluten to have the test, from what I know) and then even if the test is negative I would remove all traces of gluten from your house for at least 2 months (it’s a bit expensive but it’s not that hard to do–Annie’s makes gf bunny crackers, glutino makes a bunch of gf stuff, costco sells udi’s gf bread or you can bake yoyr own, trader joe’s has cheap gf flour abd crackers and other items, like frozen pizza, and bob’s red mill makes lots of cheaper gf mixes, and gf bisquick is da bomb for pancakes/waffles/biscuits) and see if he gets better. Gluten causes autoimmune inflammation in a lot of people, even if they don’t have celiac disease. I’m one of those people. I have Crohn’s, hypothyroid, and a couple other autoimmune issues but not celiac–however–gluten makes my autoimmune issues “flare” so I haven’t eaten it since 2013. The gluten free diet only works when you do it 100% though, no cheating, because even a little bit triggers immune response. So you can’t do 50% or 75% gluten-free and expect it to work. XO

    Liked by 1 person

    • So glad you asked this, as that’s how we found out about the low IgA. I have celiac, so we (oncology and I) thought that Logan might have it too. Unfortunately because his IgA is low, the test came back inconclusive and we would need to get with gi to do biopsies. It may be something to look into in the future, but right now they are more concerned that his immune system is malfunctioning

      Liked by 2 people

      • Oh not at all! I appreciate any insight anyone has into why my little guy isn’t operating at 100%! I was diagnosed with celiac in 2007, and that’s actually how my husband and I met. He worked at Whole Foods and it was the only store that carried gluten free snack foods at the time.

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      • How cool is that?! I bet you have lots of great recipes then! I didn’t feed my toddler any gluten until she was almost 2 years old and I breastfed her until she was 2.5 yrs old because I have always worried that she would follow in my footsteps. Even now I feed her gluten but it’s mostly organic and she doesn’t even eat bread (her choice) just crackers or cookies. She eats a lot of chicken nuggets so I buy a good gf variety at costco. Anything I bake is gf–I use pamela’s flour (sometimes trader joe’s for cookies, like to share at Christmas b/c pamela’s is expensive) or I use bob’s red mill gf pie dough mix and make quiche with it fairly often. If we eat pasta it’s gf pasta and I’ve taken to making cauluflower pizza crust. The gf bisquick makes the most amazing waffles–I usually add pumpkin or banana and chocolate chips–and my cheap little waffle iron works beautifully (I coat it woth coconut oil so that helps). XO

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