PKU.com Community Discussion Forum Parent support Desserts Reply To: Desserts

#6860
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Roslyn
Member

Hellow Hannah, I will try to put into words what my experiences have been. My son (Pat) is now 29years old. He was born in Ipswich (Qld). Apparently they did a heel prick test on him after he was a few days old but I never new the results of this test so I didn’t know he had PKU and after being discharged from hospital I received a booklet to take to the Clinic each week to get him weighed and to make sure he was growing and developing normally. On this card were some letters I just assumed that it was some sort of code they used a this particular Clinic so didn’t pay it too much attention and no one ever mentioned it so it got forgotten. nHe was a good baby always drank his bottle (cows milk) with not a worry. As he grew he started to have behavioural problems. He was never violent or abusive. He just wouldn’t do what was asked of him either by me, his father or the teachers at his school. He couldn’t concentrat on his work and became a distraction in the class, we took him to an Optomatrist and found he was short sighted and he was prescribed glasses. He was pretty good with him wearing them. nWhen he was in Grade 1 he ran home from school because he didn’t want to be there and then he started to soil his pants. I was asked to take him to a Child Phsycologist to see what the problem was. nHe was assessed and we were told that he was Hyperactive and seeked attention. They prescribed Fanurgon (not sure of the spelling). This only made him doey (you know what I mean not himself) so we took him off that but continued with the sessions. nOver the coming years it was very difficult and to make matter worse we had 3 other boys to look after and they couldn’t understand why he was always in trouble. nHe would have spurts of good behaviour that would last approx. 3months and then he would abnoctious, rude and down right uncontrolable. He eventually got permission from the Education Board in Qld. to leave school at the age of 14. nSince then he has been in and out of jobs, he can’t seem to last at any one place for long. He has been on the Dole more times than he has been employed.
In 2000 he got married. He then had a son who was diagnoised with PKU. He told me that as both parents have to have this gene then that meant he would have had PKU and asked if I knew if either his father or I were ever diagnoised.
I told him I had never heard of PKU let alone know if I had it. nTo make matters worse I was brought up with the knowlege that you had a decent meal at night of meat and vegies, had milk with breakfast and also during the day as well as all other dairy products (he loved yoghurt). nHis son is now 7years old and is having behavioural problems himself and has be diagnoised with ADD and ODD. So the problems go on.
It wasn’t till I was going through all the certificates and sports medals and photos (I was getting together all the boys things to give to them that they had received over their school years)that I came across the Clinic book, I didn’t take any notice of the letter on the cover I just put it in the box with the other things and gave it to him. nAbout 2hours later he rang me and asked about the letters on the cover of this book. I told him I didn’t know what they meant. That’s when he told me that it said PKU.
I was so angry at myself for not taking notice of it all those years ago. nHe has become a person you can count on for a hand, nothing is too much trouble for him. He adores his 4 boys and I might add is a wonderful father. As he says he knows all the tricks because he has used them all over the years so his boys won’t get away with much at all because he is wise to their games. nHe still has a lot of issues and won’t go on the PKU diet. It will cost him approx. $200 to have the test so he said that is out of the question.
I love my boy (as I do all of them) and wouldn’t change anything, because if I did then he wouldn’t be the son I know and love today.
I hope this helps you, if you have any further queries please contact me and I will try to answer them. nGood Luck, nRos.

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