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December 2011 Moms
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Ugh - DS Doc update (More ???'s than answers)

MesmrEweMesmrEwe member
in December 2011 Moms

We finally got the last of the results back from DS's endoscopy...  Nothing like being left with more questions than answers...  The doc said everything came back normal on the letter we got. OTOH, when I was going through the labs, one small test result flagged as having a low level, and "Dr. Mom" taking to The Google to dig a little and that area is a "flag" marker for something that I not only have going on, but is a genetic malabsorption condition that I can go 4 generations on one side to find (doesn't matter how much Vitamin D/milk we ingest or burn to a lobster, it's not getting absorbed!), so I now am left with the question of "where next" because of having had to take a crash course on this particular problem and finding an MD worth their salt to figure it out and diagnose is a challenge (I went through four so far myself and only found one who put the puzzle pieces together - and she left the practice to go into a completely privately owned practice (have to work for the company to make an appointment there)...

Then the other "WTF" on the results is that DS has always broken out into MASSIVE diaper rashes whenever he takes in regular milk, so we've always given him Lactaid Milk...  Well, the GI test showed his levels "normal"... 

And, the other thing is that there were indicators during the procedure that the problem is likely tied to a food issue so figuring out which one now becomes the challenge since dairy has apparently been ruled out...

..and here I sit trying to figure out "Hmmm  What/where to next???"

 

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Re: Ugh - DS Doc update (More ???'s than answers)

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    -T--T- member
    What kind of a doctor are you taking DS to? Is it a GI doc? I guess I would probably call and let the doc know of your concerns, that it's hereditary to have these markers and if the doc blows you off, try another. That's so frustrating. At least you are keeping track of what is working for him. I hope you can figure out what the issue is.
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    RicolaRicola member
    Oh no, that sounds like a very frustrating thing to deal with. I agree with T, try to talk to your Dr. again and if they don't take your serious, look for a new Dr. for a second opinion. 

    I hope you get this all figured out soon. Hugs to you!
    DS born 12/2011
    DD born 03/2014

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    designer303designer303 member
    edited October 2013
    I have nothing helpful to say, except that I really hope you get some good answers soon!! Sounds so frustrating.. good luck :)

    TTC#1 May 2009- July 2010 on our own with no luck

    Started with RE in August 2010, dx with unexplained IF and then finally our 3rd IUI cycle using Follistim and Trigger resulted in our wonderful little man.  Born 12/2/11

    TTC#2 Never really prevented, but were careful early on as Dr. reccomended

    Surprise BFP 12/16/13, started progesterone immediately as first numbers came back low, but betas were good.  Progesterone wasnt enough. Natural MC 12/24/13.

    Back with RE as of January 2014...

    5/27/14- Chemical Pregnancy :(

    April 2015 IVF#1

    5/13/15- BFP, please stick LO!

    Oh and I'm a major Harry Potter Nerd :)

    Silly mugglesimage

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    MesmrEweMesmrEwe member

    Milk protein allergy came back negative..  OTOH, I said, with that for a result, "well then, let's test it out and give him some dairy!" Well - my poor little boy's bum right now is SO SO SO red and he's looser than a goose (as though he wasn't loose enough already!)...  SO, something isn't adding up there...

    I'm not sure whether to make an appointment with his Ped or the GI doc who did the scope...  In some ways I think I'll get farther with his Ped.  OTOH, I don't have much time left with him as we got a notice that mid-December our Ped is retiring :-O :((  so we've got to find a new one that is worth their salt..

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    MesmrEweMesmrEwe member

    Thanks ladies!!!!  I just refuse to accept "Toddler diarrhea" as the ONLY explanation of what's going on.  No one gets the squirts as an adult for this long and just leaves things go unchecked. 

    I've got an appointment with his Ped. in the morning to get his take on everything.  I don't know if we're on our way to a Geneticist next or ????

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