army wife with pku needing advice

army wife with pku needing advice

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army wife with pku needing advice

March 28, 2010 in Uncategorized

hello I am a army wife who has pku. I can not seem to get it through the armys head that i need to be near a pku clinc. my husband has tried to get reassigned but its seems that they just think that i want located by a clinc so i can get pregnant. We all know just b/c im not preg doesnt mean i dont need to be near a pku clinc. I just recently lost my son Jacob due to heart defects. In the begining When i first found out i was prego the army hospital right away said we cant deal with you.. so off i went to a doc an hour away they partially took care of me but sent me to another doc a gentic doc 2 more hrs away. by this time i was 4 months prego and uncontrolled levels. I ask this genetic doc to recieve formula that never happend. By 7mths they were sending me 5 hrs away to get treated where there was a pku clinc, maternal fetal medicine,and the childrens hospital to take care of my sons surgeries for when i had him. i JUST CAN GET THE ARMY TO REALIZE THAT I NEED ALL THAT CARE NO MATTER WHAT THEY SEEM TO THINK JUST SEEING A GENTIC DOC IS GREAT AND USUALLY THE DIETICIAN HAS NO CLUE HOW TO TREAT A PKU PERSON I HOPE SOMEONE MILITARY WITH PKU WHO UNDERSTANDS MY ISSUES READS THIS AND CAN HELP ME!!!!! IM SO DESPREATE RIGHT NOW

8 Reviews of army wife with pku needing advice

  1. Registered: May 2, 2009

    Posts: 0

    Topeka, Kansas

    i dont have answers but read your blog and hope you find the help you need real soon.

  2. Registered: Feb 1, 2010

    Posts: 0

    Tucson, Arizona

    Hi. My husband is in the air force reserves and we have Tricare. I do not see any doctors on our base because it is a small clinic and we are not active duty. I do have a 4 hour round trip whenever I go to my clinic though because there is only one doctor in the entire state of Arizona now. It is difficult sometimes and it is hard to find people who know/understand PKU at places other than at a PKU clinic. Where do you live?

  3. Registered: Oct 13, 2007

    Posts: 0

    canton, Ohio

    we live at fort stewart ga. kristi do u have any children?

  4. Registered: Nov 3, 2009

    Posts: 0

    , Massachusetts

    I WANT TO HELP YOU!!! Email me at westernmassdj@verizon.net
    and go see my site.. http://www.thepkuchallenge.com
    i will talk to you soon.. Chris…

  5. Registered: Feb 1, 2010

    Posts: 0

    Tucson, Arizona

    No, we don’t have any kids yet.

  6. Registered: Nov 3, 2009

    Posts: 0

    , Massachusetts

    wow that sounds very trying. i am sorry that the availability is not there for you to get the care you deserve. with such a great service you and your family is doing to our country i am sad that there is not equal service that our country can provide you! i am very sorry to hear about your son, your story makes me realize we have come a far way, but as a community we have a long way to go to get the care we need and deserve. i hope that others such as kristi who is in a similar situation can help you out… just a suggestion, do you have an old clinic that you used to go to? is there some way that they can write a letter on your behalf explaining PKU and the NECESSITY of good quality treatment, pregnant or not? it may help? just an idea… i hope your situation finds resolve soon. keep fighting the good fight!

  7. Registered: Jul 1, 2009

    Posts: 0

    , INTERNATIONAL

    Gosh! That’s awful!! I have a friend in the military. She doesn’t have PKU but her husband has had heaps of medical trouble lately and they have not been helpful. Although she may not be able to identify with the PKU side of things, she may be able to commiserate with you about the lack of care!

  8. Registered: Feb 1, 2010

    Posts: 0

    Tucson, Arizona

    I agree with the suggestion of going to a clinic you’ve been to in the past if possible to get some documentation about what PKU is and why it is important to recieve care (whether pregnant or not!). I would send this letter to both Tricare and your medical clinic on base. I know that in Georgia, Emory University used to be a big name in PKU research so I would think that there should be a clinic somewhere in the state that could be available to you. Perhaps you can look into that and be armed with information when you go to your PCM about who he/she can refer you to. Tricare covers my clinic visits off base, as long as I have a referral. If you do end up having to travel a ways to get to clinic, it stinks but at least you know you’re getting good care. Maybe contact the clinic and see if there is anyone in your area you might carpool with. I know in AZ we have a long drive whether we’re military or not.

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