This site has been sleeping for a very long time. Since my last PKU post I have had 4 major hip surgeries, 9 titanium screws installed, 2 extended hospital stays, 6 months off work and 6 months of full time French language training.
That is just me personally. Both my kids needed some extra attention for the last year or so to help ensure they can do the best they can in school and other activities. Both do competitive sports from September to June, and soccer in the spring and summer and my son does Spring hockey. My husband helps coach 3 hockey teams and works full time.
Right now I seem to have most things balanced pretty well. Surgery recovery is done. I’m in class full time and chauffeuring kids almost daily.
French training has been difficult for me. I don’t recall if I mentioned before but I have ADHD as well as PKU. I don’t feel, in my case at least that the ADHD was caused by PKU. When I was very young my diet was very well controlled and I still demonstrated all the symptoms of the disorder. As an adult, spending all day in a small class room being exposed to a bunch of information in a second language my crazy busy brain was having a hard time focusing on the course material and really taking in the lessons.
I did class for about 2 months before I decided that something needed to change. I saw my family doctor and we decided that I would try Adderall (a stimulant medication) in order to help me cope with full time classes.
I feel that it has helped me a great deal in the last 3 months in class and overall with general fatigue which is something I had a huge issue with previously.
However one of the regular side effects: appetite suppression, has made my PKU and my diet overall a lot more complicated.
In the last 3 months I have lost about 23 pound. While I had some weight to spare after month of time spent recovering multiple times I knew that generally my new normal of eating 1-2 times a day and consuming 700-900 calories was not going to be sustainable long term.
Around Christmas I contacted my PKU dietician at the Children’s Hospital of Eastern Ontario and explained that I needed help coming up with a new plan with some new complicated factors to consider.
I’ve used a bunch of different options lately and before the Adderall I was still using PHEBloc the LNAA therapy and trying to each enough protein to fulfill my requirements. I had been using Shakeology and pasta, rice and cheese as my staples every day. Since the Adderall it had been one or the other with not enough natural protein to provide the nurturance expected.
The dietician had some great ideas for high PHE low volume foods to try to add to my diet to make up the difference day to day. The idea of eating some of these foods was still unappealing to me.
I have ordered some PKU metabolic formula options and I am going to try to concoct some sort of plan to meet my requirements. I will send some food records to the dietician. Do a blood level (which will be high with the LNAA therapy anyway) and eventually do a complete CBC to check other vitamins and minerals.
My last phe level was around 1400 micromoles/litre