Thanks for the info guys! We're having the WORST time trying to get the formula. Our insurance will cover it with a letter of medical necessity. I can get that without any problem but finding a provider that can get the formula has been a nightmare. We're currently trying to find someone that can get PKU 3 made by Milupa. I tried working with Apria Healthcare and I haven't gotten anywhere. We've spent a week going around in circles talking to anyone we can think of and are still at square one. Can anyone provide me with a Durable Medical Equipment provider as that is what everyone tells me I have to use to get the formula??? Thanks in advance
Terri, My husbands levels were at 1197, the normal was between 30-80 for people without pku. I don't know the measurements of that but maybe that will give you an idea. He got his blood tested again last Wednesday so we're just waiting to see how much restricting his diet has helped. I'm just worried for him not having the formula and restricting his diet because every website I've read said that diet restriction without the supplemental formula is dangerous. So hopefully we can find someone to help us soon. Our family DR is doing a really great job for being just a regular DR and our specialist appointment isn't until February 23 of next year so we've got a long wait ahead of us.
Any information on this would be greatly appreciated. I can find websites to order the formula on but they don't accept insurance and we don't have the money to get it without the insurance.