PKU.com Community Discussion Forum Parent support PKU and the Military

Viewing 9 posts - 1 through 9 (of 9 total)
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  • #8017
    Avatar of Jeremy
    ArmyPKU99
    Member

    I just wanted to start this forum for anyone who had questions about (or is just interested in) how PKU works with the military.
    I have been in the Army for about 10 years now and I want to help any parent or person with questions regarding the military and PKU.

    #8035
    Avatar of Brianna
    nbswope1
    Member

    hi my husband is in the air force and we have two hyperphe kids. and we have had nothing but trouble since we pcs a year ago. are you the one with pku? tricare has denied my daughters formula but not my sons. but the have been paying for it for four years now so we dont understand why all of a sudden they have stoped. and the doctors on base have no clue what pku is and our pku doctor isn’t really healping either. i have been calling people and trying to get answers but this has been going on for over three weeks now.would you have any suggestions or has this ever happened to you. thank you for any help

    #8037
    Avatar of Jeremy
    ArmyPKU99
    Member

    Hmmm… First of all, I am the one with PKU (classical). I have had Phenyl-free 2 HP sent to me for the past 5 years and have had no issues with Tricare on receiving the prescription. It is fully covered along with other types of formula under the Tricare system.
    I would ask, has your prescription has run out? Meaning you might not have any refills left? I know that they don’t give you unlimited refills and this might be a factor.
    I have run into the same experiences as far as the doctors not knowing about PKU in any detail at all. I have been fortunate enough to be able to relate my past years experience and guide them (yes, the doctors) in the right direction and offices to deal with. The only recommendations I can make is that you can either find the closest large military hospital (for example, Walter Reed, Bethesda or Tripler) and they’ll have a nutritionalist, dietician or an endocrinologist that will know more about PKU and be able to be your center point for making all medical decisions and taking actions (such as ensuring you have the right prescriptions coming in). You would have to contact your docotor to make a referral to the hospital for a specialty appointment. In some cases, they may refer you to a civilian doctor if a large military hospital is not close by (if they don’t refer you to a civilian doctor, they should). nHave you tried calling Tricare directly to see if they were the one’s that have stopped covering the prescription? I don’t think they have, but that is an option. nWhere are you currently stationed? Is your family enrolled in a program similar to the Army’s EFM Program (exceptional family member)? This program, once enrolled, ensures that a military family with children (or spouses) with specific medical needs will no be moved to a duty station that cannot support your needs. I would check with your leadership if you are not already enrolled. I hope this has helped, I will check into more on my end and post things as I find them. Please let me know how these options pan out.

    #8041
    Avatar of Brianna
    nbswope1
    Member

    thank you for tose tips. i did try calling tri care and just got the run aroud say that they didn’t cover medical foods and after trying to tell them about it they still said no. so i had pcm put in a refferal and not the pku doctors and that worked but they gave me a compny that didn’t have the phenex so i went into the tri care office in the clinic and say i wouldn’t leave until they got it fix or if they couldn’t then i was heading straight to efmp. and yea we are enrolled in that but i seems that the don’t rally help. but i guess what was wrong was that we had to find someone in the tricare net work that could get phenex. i made them call until they found one. now i know what to do if this ever happens again. but i had to kind of get lound for them to do their job.we were at hill afb ut and i never had to do anything like this the doctors knew how to do it. we are now at davis monthan in az and we have been here for just over a year and i have had to fight to get there phenex every time. the pku doctors here haven’t really helped either i have had to do all the calling. is that how it is for you? and i thought you were’t allowed in the military if you had pku and how does it work when you are deployed?well thank you for your help.

    #8042
    Avatar of Jeremy
    ArmyPKU99
    Member

    You are welcome but it doesn’t sound like you are totally “set” yet. On Tricare online, you can check to see what PKU formulas are authorized under Tricare (which, Kuvan is now authorized, you just need a doctor to prescribe it – and a dietician/nutritionalist to work you through the doses and keeping a log of progress)these (formula) you should be able to get with little to no issues. I don’t know if Phenex is one of those covered. Once you find the doctor who prescribes the formula, stick with that doctor and fill them in on your past history and only request that doctor when making appointments, this makes refills and switching to new formulas easier. nThey were correct in saying you cannot get medically prescribed foods, that stinks. But formula is completely covered. (Check with your states funding for reimbursement for food) nThings in VA for me are quite nice, I have gone to Walter Reed regularly to get some support in getting Kuvan started (but the dietician moved before I could start it…there’s a lot more story behind that) and since I have talked with one doctor about my PKU (and schedule for only her)I have built the rapport to where I just call her and ask for a refill and it is ready for pickup at the pharmacy (and there’s a pharmacist I have grown to know as well). It actually works out quite well. nAs far as the military, the short story (relatively speaking) is that I knew I was going to join and that I was going to stay in for the long run. This comes from all of the son’s in my family joining the military, my Dad knew I would join before I did! :-) So, with that drive inside of me, I joined under the concept that if they would ask me about my diet, I would tell them the whole story. Of course, they had no way of knowing and off I went to basic. I, for the next three years, did not follow the diet at all, only to ensure I would make it in. Then, I didn’t want to abide by it until about 5 years ago when I got my Phenyl-free 2 HP and started following my diet (liberally – only grains, vegetables, fruit and sweets with ball-park measurements) When I was off diet, my levels were in the 1,000’s. They are now below 10 (this in only a few years). I take pride in my diet and life style as there are few, if any who have chosen to take the same path (which I would probably not recommend now that I look back at it). nDeployment was my wife mailing me my P-F2HP and I would eat from the (actually, quite exquisite) buffet / chow line (salads, spagetti, fries, mash potatoes veggies and such). Without the shake and great food selection, I wouldn’t have made it. nGlad to hear things worked out. Check into Kuvan for your kids, it’s covered by Tricare!

    #8043
    Avatar of Rachel
    rmbrewer12
    Member

    Yay finally more ppl in the military! My husband is in the Marine Corps and we are stationed at Camp Lejeune NC. We have a 11 month old with PKU and we have actually been going through the state for formula. The past couple of weeks we have been trying to go through Tricare to get the formula, of course they gave me the run around but I think we are making progress. We have a really great team at Chapel Hill that make life a lot easier. I do have one question though, my husband gets out in September 2010 but I am thinking of going home (Alabama, no formula or low protein food coverage except through Medicaid) since he will be on a deployment and then get out. Will Tricare cover the little ones formula and Metabolic clinic visits when we move there? And once my husband gets out will we have any coverage since he has to be a reservist for a couple of years?

    #8044
    Avatar of Jeremy
    ArmyPKU99
    Member

    Well, regardless of your location, Tricare will cover your formula. The tricky part is getting the formula while you are in Alabama. I know that Tricare does authorize prescription pick up at local pharmacies, but you may have to pay a small deductable. I would check with Tricare prior to moving there to find out the best spot to request a refill of the prescription (formula) and how you should go about picking it up. Work with your Chapel Hill doc’s to have them assist you in getting this ready. nAs far as clinic visits, I also have had referrals to civilian doctors outside of the military. I would also inquire to Tricare as to how/who you can get for the clinic visits. This should be free and not cost you anything.
    In regards to your husband being a reservist, as long as it’s not Inactive Reserves, he (and your family) will be covered under Tricare Reserve Select (the same benefits of Tricare Standard). The limitation is that you cannot upgrade to Tricare Prime. The policy runs about 185 a month for family with 75 bucks extra for dental. Relatively speaking, this is pretty cheap (when compared to other employer plans). nMy sister has helped me out with the reserve information, her husband is in the Guard and the benefits and plans for the two components (Reserve and Guard) are very similar, if not identical. From what she has told me, I am pretty sure your coverage under Tricare Reserve Select will cover the formula for your child with no cost to you. As always under Tricare (Prime included) low protein food is not covered.
    I hope that this info helps. Tell your husband that I wish him Godspeed and that he needs to keep his head down and chin up! Best of luck to your family during the deployment.

    #8045
    Avatar of Rachel
    rmbrewer12
    Member

    Thank you! I can’t tell you how good it is to have someone else in the military around!

    #8053
    Avatar of Brianna
    nbswope1
    Member

    sorry it took so long to get back but i did check is phenex is covered by tricare and it is it was just a matter of getting people to do there jobs. they wanted me to do all the calling and finding out who could get it. and they didn’t understand what it was for. that was the hard part trying to get them to understand that it is something they need. and it is so nice having someone in the military to talk to about this. thank you so much.

Viewing 9 posts - 1 through 9 (of 9 total)
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