Well couldn't really figure out a good title or a good section to put this in as I probably have quite a few things to write. Not a whole lot is different than the last time I made an update other than starting the new drug for PKU called Kuvan. So far I haven't had any problems with it and it has been going well. My last level was 4.6 between 2 and 6 is normal so I'm right in the middle. I am guessing that it is due to the drug but I'm not really for sure. I am on a 90 day trial to see if it works ... Read More »

Formula:

Well I have finally sorted out the issues I had with my formula. I was taking the Phlexy-10 drink mix which was costing me $500 up front to pay for it each month. Then I would have to wait for ages to get reimbursed from the insurance company. Now I have apria and they pay for all the upfront costs and all I have to do is to pay the co-pay. I think they had it wrong but this month all I had to pay was $7 for a month ... Read More »

Well I decided that I would add another blog topic. Every once in a while I feel like writting about PKU which is a genetic disorder that I have. Individuals with PKU lack the ability to create an enzyme that breaks down a specific amino acid. If this amino acid builds up in your blood system you end up with brain damage. Left un-treated you basically turn into a vegetable. The treatment for this is an extremely restrictive low-protien diet, and a very very new treatment or drug called Kuvan.&n ... Read More »

BioMarin Pharmaceutical Inc. (Nasdaq and SWX: BMRN) is a company that has been heavily involved in researching and development of a drug for individuals with a rare genetic disorder, Phenylketonura (PKU). PKU is a metabolic disorder in which individuals lack an enzyme to break down a specific amino acid Phenylalanine. This amino acid builds up in the body and can lead to mental retardation in patients left untreated. Currently the only form of treatment is dietary restriction of high protein foods ... Read More »