Community Discussion Forum Generation PKU Anyone from England? Reply To: Anyone from England?

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 Im from north west england and im on the pku cooler 20's purple and pku cooler 15 as im pregnant, I think there great as there quick and so easy 2 travel with but they do taste nasty and i can not at all drink them if there not refrigerated!! I have classical pku and i hate it 2!!!!!!!!!! I used 2 be on the tablets but i was on 120 a day that was horible trying 2 take them so i was put on the phlexy10 sachets, they were better but still foul! lol 


I started cheating on my diet once i was in secondary school and then i was totally off my diet by the time i was 17-18 and i fell pregnant with my first child, i didnt know i was pregnant and i was on the pill so i wasn't planning on getting pregnant either but i was and i dont believe in abortion so i carried on with the pregnancy. I was 8-9 weeks b4 i found out i was pregnant and my levels were 900 + so i was admitted 2 hospital and i then spent the rest of my pregnancy there until my son was born. Even tho i had 15 scans through the pregnancy, i was told at every1 that all was well with him but when he was born my son had a lot of serious medical problems thankfully tho they were fixable but the amount of operations he had 2 have was so hard 2 see him go through with his first at just 4 hours old. He was born with no bum, heart murmur, his oesophagus had grown attached 2 his wind pipe and the other end was there but just hung with a blockage at the end it is known as T.O.F and if that wasn't all bad enough i couldnt name him as they couldnt tell if he were a girl or a boy as there was nothing there but then after a week it just appeared. This all happen 2 my son within the first 8-9 weeks of the pregnancy as this is when i was not doing the diet at all. My second son i did diet but he was still born with minimal brain growth and now 2day he is 6yr's and 8 months and can not talk at all, he has not speak what so ever. My eldest is not totally fine after 12 op's.

I have now been on my diet since june of this yr and hadn't been on it since i was last pregnant in 2004 and apart from having my children since i was 17-18 i haven't been on my diet at all, i ate totally freely. Im now 8 weeks pregnant and all is great my levels have been 50-200 but my last 2 have been higher at 262 and 360 which i dont understand as i haven't done anythin differently but im now trying my best 2 get them back down again!

Due 2 the lack of diet i have noticed side affects like lack of concentration, clumsiness, problems reading and spelling. And worst of all my memory is terrible i forget everything all the time.

Sorry i've gone on abit ere lol if any1 wishes 2 talk about anythin pregnancy, pku, planning pregnancy ect plz just msg me k 

Good luck 2 us all we need it with this party pooper of an condition we all have lol 

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