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What would you do?

Okay, I am about at the end of my rope here, and I need some sort of suggestions.. background: my DD is three and a half, born very early with fetal growth retardation, failure to thrive, bleed on the brain resulting in fluid on the brain, on a feeding tube, severely "delayed" in all academic areas.... We have been fighting now for two years striaght to get some answers on our daughter. She has utter refusal to eat, which is why she has the feeding tube. she has had mri's and eeg's to check her brain, which come out with questions instead of answers. she has been tested for gi issues, motor issues, CF, and countless other tests that have all come out normal. I just am out of ideas on how to help her, and to get the doctors to help her!!!!! what would you do?

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icn_mom

Asked by icn_mom at 1:57 PM on Oct. 26, 2010 in Preschoolers (3-4)

Level 13 (939 Credits)
Answers (7)
  • I have no clue...that sounds so heartbreaking and emotional. I am so sorry you are going through this!!! Stay strong you will get answers soon!
    anikahaynes1

    Answer by anikahaynes1 at 1:58 PM on Oct. 26, 2010

  • Go to another Dr. Have you tried the shriners too.
    My3Ez

    Answer by My3Ez at 2:01 PM on Oct. 26, 2010

  • what is "shriners"?
    icn_mom

    Comment by icn_mom (original poster) at 2:03 PM on Oct. 26, 2010

  • Second opinion is all I can think of, if you have had every test availible, find someone new to look over it. Sometimes it takes a few Drs before you can find one that can help,. Good Luck for you and her
    NicholeAT

    Answer by NicholeAT at 2:12 PM on Oct. 26, 2010

  • Oh, Mama, this must be so hard on you and your daughter. I'm sure you feel like if you could just get some answers then you could better address the challenges she faces. I would definitely say get second and third opinions, are their any specialists you could try or a children's hospital that might be able to help? In two plus years I am sure you have exhausted a lot of avenues but I will just try to encourage you to keep trying. If there is something you can do for yourself to reenergize that would be great- a day off for you to relax and enjoy yourself. But then I say keep fighting, keep looking for answers and pestering every doctor, nurse, and orderly that you can until someone comes through for you. You are your daughter's voice and her advocate and your efforts are to help make her life better. You must have enormous strength as a mother and a woman. I hope you find answers soon.
    MaryMW

    Answer by MaryMW at 2:17 PM on Oct. 26, 2010

  • Get a 2nd opinion. Get referred to specialists. Try kids' hospitals (CHOA in Atl saved my son's life.) and see about folks like the shriners.. They do a lot of work for sick kids. The big thing... don't give up. If this doc or that doc can't tell you something, go to a different one.
    nytefae

    Answer by nytefae at 2:28 PM on Oct. 26, 2010

  • my first thought is tolook to god for answers study the bible, fast, pray, until he sens u an answer. Things always happend for a reason even though they seem to be heartbreaking and hard to deal with. Second search high and low for a doctor who is familiar with cases like yours.It sounds to me like u r tryin everything u can and im sorry i dont have any concrete advice of how to fix it now but i will keep ur family in my prayers.
    mg25

    Answer by mg25 at 9:49 PM on Oct. 26, 2010

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