I'm so glad this week is almost over. All I've been doing at home is survival mode - fix breakfast, lunch and dinner for everyone and put them to bed. Lots of phone calls and I've felt like I've been in paperwork hell with all the forms I've had to (and still have to) fill out for Olivia and family.
Things were busy and going well, but I came up against a bit of a roadblock today. We need to see a Pediatric Dietitian, preferably one who specializes in obesity. The closest one to us that fits that bill and who has some knowledge of Prader Willi Syndrome lives in Atlanta. (Bailey Koch with Atlanta Pediatric Nutrition if anyone is interested) Unfortunately Tricare won't cover any dietetic services unless they are given at a MTF (Military Treatment Facility). I talked with our Tricare representative and found out that it would literally take an act of Congress in order to get those services paid for. Joe Wilson, expect to be hearing from me soon!
In the meantime, we tried to find a way around that by going to the dietitian at the Naval Hospital and asking her to refer us to Bailey, hoping that once it was acknowledged that she couldn't help us it would get paid for. She agreed literally within the first 3 minutes that it would be best for us to go there and spent the better part of an hour trying to figure out a way for it to happen. It still came down to this...NO. The only option we had was finding a MTF anywhere in the US with the expertise to deal with that and then go there to get services. Travel not included. She is currently looking into it, but I doubt she will find anyone.
After coming to that conclusion, she gave me materials she gathered from the web about low calorie low carb diets and told me that literally the only thing she could find was that calories needed to be restricted between 33% and 70%. She said it was such a huge range, divided the difference and said we should restrict her calories 50%. I know she meant well, but it was probably one of the things that bothered me the most about the visit. She was giving me her best GUESS. On a major issue. I could have done that myself. It's not her fault at all, but I was bothered by that being my only option - again not her fault. Cut Livi's calories to 50% across the board and see if she gains weight. If she does, cut them again. Really? How do I make sure that she is getting all the nutrients for her growing brain? I asked if there was any way to have a test run to find out what nutrients her body was actually absorbing and she didn't know of anything. I know there is something out there; I just read about it but can't remember where.
We could pay for it out of pocket, but over the years it will add up to quite a bit of money and I really feel that since it's such a big part of the medical puzzle, it should be paid for. So I'm going to try several different avenues, including contacting a company I used when I was a Chef, to try and find solutions for this problem. One thing I know for sure - the military has a waiver for just about anything if you can figure out how to do it. So I'm hoping that I can find a way to get a waiver from Tricare somehow.
Next Monday is our visit to Dr. Miller in Florida. I don't feel prepared for this visit. I have so many questions in my head but can't seem to access them anymore after this week of discussing so many details related to Olivia.
I am very glad to be going to see someone this week who is the expert on PWS and who will be answering my questions and not the other way around as it has been all week. No matter which doctor or service I talk to, I'm the one educating them. Not complaining (too much), I understand why, but I'm weary. Very weary.