A few days ago while I was on night shift, I was working with a friend of mine who is working as a care aid but is taking her Registered Nursing course. She is in her second year and we have been discussing PKU together.  On this particular shift we where discussing different forms of treatments available like Peg Pal, Kuvan and LNAA’s. We where also talking about different formulas. This was also the night I was working on my formula Journey and Formula Summery blog posts. To look up some examples to show her, I pulled up the website for the Phenyl ade product line. Together we read about their diffrent options and then I came across the PheBloc tablets. My clinic had told me about them before but admittedly where I was at that time in my life I was not that interested.

I was surprised to see, that the website said that by taking the Phe Bloc Tablets, You could change your diet from 20 % regular foods and 80 % low protein to the opposite 20% low protein and 80 % regular foods. There was a list that had what products you could eat more of , like regular rice, and breads. Which is what sparked my interest. I love Rice and bread and avacado sushi or yam sushi.  From what I understood, is that you take multiple tablets every day and it floods your blood with other amino acids so much so that it blocks the phe in your blood from getting into your brain . I was very keen to learn more, specially since it is actually a covered treatment unlike KUVAN which helps in some people to activate the enzyme that breaks down phenylalaine into tyrosine.  KUVAN is said to only work with certin types of PKU and does not have a great sucess rate in Classical PKU , which is what I have.

So yesterday I called my clinic and this is what they told me.

My dietitian Taryn , does not recommend it for women hoping to get pregnant  soon or of child bearing years , as it does not lower your PHE levels. The PHE in your blood is still high, but it is suppose to lower how much PHE gets into the brain. However there is no way to test how much PHE is getting into the brain to be sure. So there is still risk. What the PHEbloc tablets are suppose to do is push through all the other amino acids through to the brain and that is suppose to block the PHE from being entered into the brain. So you are suppose to take the tablets every day and pretty much flood your blood so there is more amino acids rather than PHE. Where I was really excited about Phebloc, this does not seem like something I would want to take the risk of. They do recommend it for others who have very high levels and are having a hard time bringing them down, or for adults returning to diet. Some adults have reported that they do feel better over all. That their side effects feel more manageable. However there blood levels still come back high. We do have a few patients on Phebloc at our clinic but,  they are adults who regularly have levels of like 20 to 30. Or adults returning to diet who eat more regular food.

I think that my Bettermilk and low protein foods are working fine for me and I am happy with my levels so this is not something I would be interested in. Just thought id pass the information on to those who are interested.

The Reason why My Dietitan does not recommend Phe Bloc for women of child bearing years and women who are wanting to become pregnant is  that even though it blocks PHE from entering the brain, it does not lower the PHE in your blood , and so that blood can still go to the uterus. High levels are toxic to a uterus and can cause damage to the baby.  Whatever your levels are in your blood are double in the uterus and toxic to a unborn fetus. So even though PheBloc can limit the amount of phe that gets into your brain, you still have high phe levels in your blood.

Even though they can test to see the levels of PHE in your brain with an MRI or brain scans, they are costly and not worth it to bring every patient in regularly to use these invasive testings. It is not as a simple as a blood test.

It is for these reasons, I have decided PHE bloc and LNAA therapy is not something I am interested in at this time. Though i do not doubt it may work for others.