My pku

My pku

Avatar of Shona

My pku

May 5, 2016 in Living with PKU

Hi my name is shona I am 56 this month I was born in 1960 in belfast I was 2years old when I was discovered with pku and I was put on gluten free low protein diet the substance I was put on was minophen I was the first person to be born in belfast with.pku as it was very rare at that time my mum knew there was something not right with me as I was doing strange things like banging my head off my cot and rocking back and forward and when my younger sister was born she got the heel test (guthrie test) and she also had pku and she also had pku....we moved to scotland when I was 3almost4 yrs old when we were growing up it was very hard for my mum we attended the royal hospital fir sick children and when we were at primary school my mum had to take us to the hospital for our check up with the doctor and dietitian and at that time we were on amino acid suppliment it was a white powder and my mum had to carry bags with the tubs plus the bread and biscuits at that time there wasnt much low protein foods out there but my friends at school used to find it funny that we got our bread from the chemist and it was in tins and we also got these biscuits in boxes and they tasted and looked like shortbread ...I found it hard sticking to my diet when I was younget I remember me and my sister used to be in the kitchen and my mum made up the amino acids with orange juice it was hirrid so thick when my mum whent into the living room we poured half down sink...we also progressed from minophen to cymogran that was worse cos it was hot water with sugar and it was lumpy but when I was 13 and my sister was 10 when we were allowed to come off the diet but only at lunch time for a week to see how we managed then we gradually were allowed iff diet altogether that was the best time but we still had to get check ups to see how we were doing but I never felt different friends when I was at school growing up I was just classed as the same bu when I was35 I was back on diet as I was expecting twins so the hospital was extra carefull but at that time I was on phlexy 10 made up with water I had to finish a big jug full by the end of the day and when I had to gobinto hospital I was also on phlexy 10 then the phlexy 10 black currant drinks and then suddenly the thought of the silver wrappers put me off taking them cos I imagined the silver taste of the wrappers but when my boy and girl wrre born they were 4lbs a piece but dont have pku but I felt I needed to go back in diet and have been taking the pku coolers since january and so far so good gonny try n get back on the low protein food stuffs
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