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Any advice for a heartbroken mom?

I have an 18 month old baby boy.He was born a preemie.He has been sick since birth and things are only getting worse as time goes on.It started with vomiting and severe intestinal infections and failure to thrive and has now gone to him having seizures.We have been trying to figure out whats going on since he was born but we still have no answers.He also has a blood disease that causes him to not have enough white blood cells so he can't fight infection.So we stay at home unless absolutely necessary to go out.He is battling an infection right now that we can't find the source for.If your child has something similar or you know any advice for me please drop me a line.Thank you.

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Asked by swtangelksses at 12:43 PM on Apr. 25, 2009 in Toddlers (1-2)

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Answers (25)
  • Where do you live? Maybe you live close enough where we can help you? I'm sorry you are struggling with this. I hope your baby gets better and you get some answers.

    Answer by SusieD250 at 12:45 PM on Apr. 25, 2009

  • omg that is so sad. i can pray for you. i wish i could do more or offer advice but i have never been through anything like this. but you and your family will be in my prayers. please keep us updated.

    Answer by SThompson21 at 12:46 PM on Apr. 25, 2009

  • I live in Baytown Tx.

    Answer by swtangelksses at 12:46 PM on Apr. 25, 2009

  • It seems like it is getting worse.I am afraid he will die before we can stop it because we don't know what is wrong with him.

    Answer by swtangelksses at 12:49 PM on Apr. 25, 2009

  • We will pray for you re baby .Thats very sad I cant even imagine how sad that must be for you .Hang in there momma things happend for a reason .

    Answer by hush84 at 12:52 PM on Apr. 25, 2009

  • A neighbor's little boy was very sick as a baby and little boy: failure to thrive, intestinal problems, constant infections. She just kept pushing and pushing until she got the right help for him. We are in CA but she ended up at a Children's Hospital in Ohio - they had the best doctor for her child. He's now an incredibly active, healthy 7 year old. The difference over the last 2 years has been astounding!

    To start with, push your doctor. If he seems baffled, ask for a specialist or simply look in the phone book for one.

    Good luck! I hope you have as happy an ending as my neighbor.

    Answer by kaycee14 at 12:54 PM on Apr. 25, 2009

  • I have several specialists seeing him now but still have no answers but thanks for the advice.

    Answer by swtangelksses at 12:59 PM on Apr. 25, 2009

  • My daughter was once in the icu and as part of the specialists that were brought in, one was an infectious disease specialist. Can you basically have a specialist from like most body parts give a consult? Or at least review records without seeing baby unless they feel another test should be done? Does M. D. Anderson say anything if you're near there? Are the specialists consulting with each other like in a round table discussion of them all at once? Prayers for your baby and family mama.

    Answer by Anonymous at 1:11 PM on Apr. 25, 2009

  • Can you maybe send his records to Danny Thomas's hospital, he's passed away but his daughter and other celebrities and families talk about it - St. Jude's Hospital for Children. They say they don't turn anyone away for inability to pay plus claim they're on the cutting edge of research. Maybe call them?

    Answer by Anonymous at 1:15 PM on Apr. 25, 2009

  • Call your local Shriner's club and ask them for information and financial help taking him to the absolute BEST experts in the country.

    Answer by Anonymous at 1:21 PM on Apr. 25, 2009

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