PKU.com Community Discussion Forum Parent support PKU and the Military Reply To: PKU and the Military

#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!

Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional