PKU PROBLEM

PKU PROBLEM

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PKU PROBLEM

January 1, 2010 in Uncategorized

HI EVERY ONE, I AM NEW ON THIS SITE, MY SON WAS BORN ON 11 OCTOBER 2009, AND WAS DIAGNOSED WITH PKU AFTER THREE DAYS OF HIS BIRTH. WE LIVE IN PAKISTAN AND MY FAMILY WAS VISITING NEW YORK, WHERE MY SON WAS BORN. DOCTORS CALLED ME AND MY WIFE AT HOSPITAL AND THEY TOLD US ABOUT THIS PROBLEM, I HAVE TWO DAUGHTER, PERFECTLY ALL RIGHT. AFTER ONE MONTH WE CAME BACK TO OUR HOME COUNTRY, BUT THE PROBLEM IS THAT WE HAVE NO LAB FOR PKU TEST AND WE HAVE NO FORMULA AVAILABLE IN PAKISTAN. NOW, DOCTORS ARE TELLING ME TO COME BACK TO NEW YORK, (MY BABY LEVEL FROM LAST MONTH ARE BETWEEN 0.4 TO 0.7) WE ARE PLANNING NOW TO MOVE TO UNTIE STATES FOR THE SAKE OF OUR BABY HEALTH. I READ SOME WHERE ON THIS WEB SITE THAT MY BACK IS ELIGBLE TO GET FREE MEDICAID AND SOME KIND OF AMOUNT IN US$ FROM NEW YORK STATE. CAN YOU PLEASE SEND ME LINK OF THAT WEB SITE WHERE I CAN FIND THIS INFORMATION. THANK YOU. HAVE A GOOD DAY AND HAPPY NEW YEAR TO YOU ALL.

5 Reviews of PKU PROBLEM

  1. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Hello,
    My name is Katie and I am from NY. I have PKU as well. Awhile ago, I posted a blog regarding medical coverage in each state…. I’ve attached the blog below… I hope this is helpful for your baby….

    Katie
    —————————————-
    Several friends on here have asked me how to go about finding information for their state’s coverage of formula and/or food… I found a few articles that might be able to assist you in answering these questions… Also, parents who have children with PKU children and adults with PKU know it is not easy information to find out… you pretty much have to dig to find these answers so I hope this will be of help for you!

    The first article below is a chart of coverage in each state… This article was published based on laws passed in 1994 or prior to 1994, so some information may have changed…

    http://www.pkunews.org/rights/lobby6.htm

    The second article offers information to both PKU adults and parents of PKU children of how to go about lobbying insurance benefits.

    http://www.pkunews.org/rights/lobby1.htm

    I hope this helps those of you who were asking me information, and everyone else who did not know their own state coverage… if you need any further information, you can look at the website where I gathered this research which is http://www.pkunews.org

  2. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    This might be helpful for you too……

    As you know, each state has an insurance department that regulates insurance in that state. The insurance department of each state would be the source for information on this topic The contact information for each state’s insurance department is listed at http://www.consumeraction.gov/insurance.shtml.

    If you are seeking the e-mail address of a Department of Health and Human Services employee named Dr. Howell, please reply with his or her full name.

    For information on all of the publications and resources available from the HRSA Information Center, please visit: http://www.ask.hrsa.gov/. All of the items that are offered are free. However, there are quantity restrictions.

    If you need further assistance, please contact the HRSA Information Center by e-mail at ask@hrsa.gov or at the toll-free number 1-888-275-4772.

  3. Registered: Oct 25, 2009

    Posts: 0

    , INTERNATIONAL

    Thank you Katie, for your prompt response. If i need any more information, i will contact you again. Take care

  4. Registered: Oct 25, 2009

    Posts: 0

    , INTERNATIONAL

    Hi Katie, Can you please advise me that we come back to NYC again, what kind of benefit my child can get? can you please guide me in brief, as we don’t live in the US, but now we are moving so i am not that femiliar with the process. My child will get free formula?? what other benefit he can get? Please advise at your earliest.

  5. Registered: Jun 27, 2009

    Posts: 0

    , New York

    While NY state mandates that formula and a certain amount of low protein foods get covered, there are loopholes to the law. Do you know where in NY you are moving? You might be better off contacting the clinic you will be going to to address your concerns. We go to Westchester Medical Center, which is about 30 minutes north of the city. We are very happy with the quality of care our daughter receives. The nutritionist is incredible. Good luck! Brenda

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