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2 year old in Utah ~ cardiologist referral

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  • 2 year old in Utah ~ cardiologist referral

    Greetings Everyone!

    Hope this message finds everyone doing well!

    A very close friend just found out that their 2 year old nephew is having some heart health issues, and has asked for some assistance ...

    He has not been diagnosed with HCM, nor has HCM even been hinted, so I hope I am not out of line or inappropriately posting this question ~ if I am out of line, please accept my apologies!

    The situation:
    The little boy had RSV when he was a baby ... he since has been diagnosed with asthma (has an enhaler and uses an nebulizer) ~ please forgive my spelling too ...

    Recently, the doctor's told the parent's that he had a murmer ~ that they believed was due to a hole in his heart ...

    After testing, they realized he did not have a whole in his heart, but instead that the membranes in his heart were growing in an unusual fashion, and this was affecting the valve in the heart, that the membranes are interfering with the blood flow - and the blood is even flowing backwards at times to this interference ...

    This was "labeled" they did give a name for it, but I can't quiet remember ...

    My friend is trying to encourage the family to get a second opinion ~ as the doctor wants to do open heart surgery to remove the extra membranes ...

    One of the difficulties is trying to find a cardiologist to refer to the family ... and possibly insurance issues if they leave the state for the second opinion (we aren't sure if this is a problem?) ...

    Does anyone know of cardiologist - maybe even a pediatric cardiologist that they could refer?

    Thanks for any assistance ~ and prayers are greatly appreciated!!!
    \"Find rest, O my sould, in God alone; my hope comes from him. He alone is my rock and my salvation; he is my fortress, I will not be shaken.\" Psalm 62:5-6

  • #2
    By membranes, could you be referring to the flaps or valve leaflets? This is a very tough call not knowing the proper terminology. The backwards flow may simply be mitral valve regurgitation or also called pulmonary regurgitation. The flaps or membranes could have vegetation on them as from a prior infection or it could be malformation. There are so many variables.

    If they are in Mass., could they get into TUFTS or Boston Childrens Hospital? Even Brigham and Womens, Mass General, all these Mass hospitals have good reputations for cardiac and pediatrics as well. I think in any case it is always good to get a second opinion and it is the right of the patient. Insurance can not deny.

    I wish there were more I could offer there is a lot of unknown here.

    Pam,

    Sorry , just saw that they live in Utah, maybe someone else will give some input for that area.
    Dx @ 47 with HOCM & HF:11/00
    Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
    Lead failure,replaced 12/06.
    SF lead recall:07,extracted leads and new device 2012
    [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
    Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
    Genetic mutation 4/09, mother(d), brother, son, gene+
    Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

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    • #3
      Thank you for the input & for the insurance insight ... very happy to hear that!

      I tried to post what the diagnosis was, but I'm not sure what happened to it?

      I will look forward to hearing from anyone who knows about things in the Utah area!

      and yes, the flowback is the reguritation ... also interest inside regarding this could be from an infection or something since he did have rsv as an infant ...

      thanks again!
      \"Find rest, O my sould, in God alone; my hope comes from him. He alone is my rock and my salvation; he is my fortress, I will not be shaken.\" Psalm 62:5-6

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