it’s so good to be able to read that parents are going through the same things that we are.(Even though I wish they didn’t have to) My daughters levels went up to 7 at 7 weeks, and the doctors still considered her hypherphe…I said I wanted her on the formula…they reluctantly put her on 4 oz a day.(she eats about 32 oz per day)her levels dropped to 3.2! So, I still don’t know what to think other than thank goodness her levels dropped – especially after rising then dropping then continuing to rise. They haven’t gone up over 3.2 in 6 weeks!!! We had her DNA screen done which showed no specific information, due to the vast number of mutations. This whole process is extremely frustrating because it seems that no one really knows anything specific about my daughters condition or what it will do. While I’m super thrilled at her levels I want definates, like will she be able to eat protien the older she gets… not a we don’t know.Any advice?
First off I have to say your daughter sounds similar to my son. His levels never got over a 7 and they had to screen him 3 times in 6 weeks to see them get that high. I breast fed my son until he was 8mnths old but then started on foods and such so we decided to switch to formula to get a more accurate measurement of the phe he was getting. My son is a hyperphe and up until Kuvan got 500-550mg a day of phe but still had to be on diet. After awhile of measuring we could come up with a pretty good guess of how much something weighed by sight. My son grew to love fruits and veggies, didn’t really eat a lot of pasta or breads or the low pro foods for that matter. But absolutely no meat. Now with Kuvan he can have much more phe (1800 so far) but still its not enough to eat what the rest could normally and to be quite honest he still doesn’t like most normal foods. He would much rather have fruits and potatoes any day.
When the babies are little they try to get a good idea of what they can have but as the child grows and their activity levels etc the phe tolerance can change. I think it is all a bit different for everyone. Most people won’t be able to eat meat and have good levels its just too much phe. maybe if they went off diet when they are an adult but even then there can be some effects from it.