My kid has iron deficient anemia!!

bunnerfly
bunnerfly Posts: 197 Member
edited March 2016 in Food and Nutrition
And we're not sure why.

We took him to the doc because he had been running a low grade fever on and off for several weeks and felt crummy. They couldn't find signs of infection other than the fever, so they did blood work. Everything was normal except for his red blood cells and iron levels.
He's been battling unexplained headaches for years, and has behavioral problems, specifically, he was diagnosed as having ADHD, and one pediatrician suggested a very mild form of autism when he was 4. He was diagnosed as failure to thrive (he was ahead mentally, but waaaay behind in growth) when he was between 1 and 2 years old, despite giving him nutritional supplement drinks and closely monitoring his food intake. They tested him for everything from cystic fibrosis to celiac disease... I mean... I eventually said no more. It had been 3 years of almost weekly doctor's visits, pokes, prods, etc. No one could tell me what was wrong, he was being sent to specialist after specialist, and no one could offer any explanation.

I guess what I'm saying is, is that I'm floored that he's anemic to begin with. He's skinny and small for his age, and I'm wondering if it's possible he's had issues with this all along. He'll be 11 soon and is still wearing size 8 pants, so we really watch what he eats. We make sure to have veggies and meat with every meal, and we even pack his lunch. We do whole grain everything, and only eat junk food occasionally.

I'm half venting, half looking for support I guess. I'm dying here waiting for the pediatrician's call to schedule a more in depth exam. :-/

Replies

  • fishshark
    fishshark Posts: 1,886 Member
    when i was 10 I got my tonsils out and they broke my artery. They coterized it in surgery no big deal. Except it broke open on 3 different occasions i lost 2/3 of my blood had 2 transfusions blah blah blah. I was anemic from then up until a few months ago. born 3 months early and was tiny my whole life until puberty i caught up... through my life before the age of 18 I have had pneumonia 4 times, valley fever twice, infections mono 3 times, chrons disease, and basically always deficient. I cant even tell you how many drs and tests ive been too so I know what your son has gone through and my parents know what you go through. Now at 29 im doing good i struggle with headaches fatigue but my anemia and vitamin deficiencies are good besides D and B12. i know its hard and it can feel hopeless.. what i can say is he might not ever be "perfect" but if the controlable issues can get under control it will help so much. Anemia can cause a lot of issues especially prolong anemia... it very well could have caused some issues if been there since he was a baby/toddler. What helped me was finding an awesome dr not willing to settle or give up. Sorry so long I just remember seeing how helpless and sad my mom was dealing with having a sick kid.
  • Colorscheme
    Colorscheme Posts: 1,179 Member
    My son is small too. He's 17 months and wearing 6-9 month pants. He's not even on the growth chart. I suspect he has a genetic disorder but until I get an endo referral, nothing will happen.

    Anyways, I have anemia too and I'm going to be taking iron pills soon. From what I understand, anemia is a chronic thing. I was never anemic until I had my son, it's odd.
  • nvmomketo
    nvmomketo Posts: 12,019 Member
    When he was tested for celiac disease, did they do the full panel? Most doctors will just run the tTG IgA and serum IgA ontrol test, and that's it. Celiac tests miss about a quarter of all celiacs so getting a variety of tests done can be the difference between a diagnosis and continuing to suffer.

    These are all of the tests:
    • tTG IgA and tTG IgG (tissue transglutaminase)
    • DGP IgA and DGP IgG (deaminated gliadin peptides) - best tests for kids
    • EMA IgA (endomysial antibodies) - tends to detect more advanced disease; similar to the TTG tests
    • total serum IgA (a control test because 1 in 20 celiacs are too IgA deficient for accurate tests)
    • AGA IgA and AGA IgG (antigliadin antibodies) - older and less reliable tests largely replaced by the DGP tests
    • endoscopic biopsy - 6+ samples taken

    He must be eating gluten in the 2-3 months prior to the blood tests being done.

    He has pretty classic celiac or non-celiac gluten sensitivity (NCGS) symptoms. Anemia is the #1 celiac symptom, and headaches and behaviour issues are very common too. Would you consider a 4 or more month gluten free trial for him even if the tests are negative? A GF diet is a game changer for people who are gluten intolerant.

    Best wishes.
  • MelaniaTrump
    MelaniaTrump Posts: 2,694 Member
    Surprised a doctor has not been able to tell you the above.
  • elphie754
    elphie754 Posts: 7,574 Member
    JanetYellen wrote: »
    Surprised a doctor has not been able to tell you the above.

    Is this really needed? She very clearly said in the OP that she has been to numerous specialists and has not gotten answers yet. Doctors do get stumped from time to time.
  • BigLifter10
    BigLifter10 Posts: 1,153 Member
    Good friend of mine has a son (grown now) but also had similar issues....he was diagnosed with Crohn's when in late teens.... it turned out to be the reason for low ferritin levels and inflammatory process throughout body. There could be a myriad of things in your son's case, but this is just another thought that could potentially be worth looking into IF he has other symptoms as well.......Good luck w/the process!

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