dont know where to go from here

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    • dont know where to go from here

      In the last half a year I have been dating a woman who has a son with PKU. How ever he has other health issues as well. Half blind and a bowel problems for with he has to wear a diaper. He is 13 and a bit of a problem child at times. Doesn't like to follow the diet or take his formula with out a fight . When I say with out a fight it is almost meant literally. A lot of threats come out of this child's mouth. Even ones which he threats physical harm to others ,such as his mother. Although he can be this way and very compolsive and act with out thinking . I do look at him as a good and kind kid. Just like others in the world he has his problem. Due to some of the problems child services has been involved. They are now at a point where child services has come and taken this child. Saying he is in danger because he is late on blood work , not going to school and not following his diet. It is very trying . Really I am courious is missing blood work something that happens? Are there PKU people out there as well that have been rebellious and gone off diet? And because of doing so has social workers come stepped in and taken you or your child for missing school how do you deal with a child when you can not physicly force him to follow rules and go to school because you even so much as lay a finger on him toove him ans these social workers come after you for abuse ... Yet the come take him away because of him not going ... Sorry sort of rambling here it is all so frustrating :S :wacko: :?:
    • Oof, this is one hell of a story. Where to start... I guess missing blood work (Why did he miss it anyway? Doesn't the boy get regular appointments for check-ups, presciptions and blood tests?) signals child services that the diet is not taken serious enough, especially if the boy doesn't keep his diet and his blood results go through the roof. I'm not saying that you or his mother don't take PKU and the diet serious, I'm just trying to imagine what might go through the social workers minds, so bear with me. Since long exposure to high levels of protein causes irreversible brain damage fast reaction is necessary. If the diet is correctly done and the blood results are still bad, doctors will try to find the source like hidden infections. If they suspect the reason is an incorrect diet they will keep an eye on the family. Of course they know teenagers are prone to rebel, yet if social services suspect that other reasons play into it (like the issue with violent outbursts and truancy) and the child needs a sort of care and supervision that is not possible at home, they are fast to act. It does not happen often but I know of at least two cases where the child was taken away, one was about 30 years ago, one was just last year. So taking a child away because of the diet is not a current issue. In both cases the parents were not capable of keeping up with the diet. In the first case the parents simply couldn't be bothered to put so much work into the diet and kept feeding ordinary food just to prevent the children (yes, two with PKU) from causing a ruckus because they don't like dietary food. Our nutritionist once told us we would be surprise to learn how many parents have severe problems with calculating the protein intake. She actually needs to teach them simple mathematical skills. Therefore, I guess it not so uncommon that child services keep an eye on what they see as a problem child anyway.

      Where do you go from there? What is the boy's reaction to being taken away? Is he cool with it? Is he afraid? Does he beg to go home? Does he understand what happened and why it happened. Maybe this is your big chance to get through to him. He might realize how serious this is and might get his act together. When he comes back to you, you can always remind him what happened the last time he rebelled to prevent the situation from getting out of hand again. What about counselling, has he ever had professional help to assist him with violent outbursts and with accepting the necessity of the diet? You should definitely seek help with how to deal with a recalcitrant child and speak with other parents whose child/children have PKU and how they dealed with refusal of the diet and secret snacking of forbidden food.
    • well in the whole of his 13 years of his life . there have been very few appointments that i know of that he has missed and from what i know they have all been is in this last year she says he took this turn. he is never with out his PKU foods or formula. Really the food him eating his foods is not the issue he does do that .his formula on the other hand is always a fight. The concerns with bad foods is that he hides it .takes it when no one is watching. Binges and hides the eveidence through out his room.. recent find 3 empty bags of beef jerky. We do our best between everyone in the house to watch it but he's a sneeky kid. Reasoning behind the 2 months behind on blood work which really is probably as follows. When we go to take him he puts up a fight and due to social services involvement. You even so much as grad him by the arm to drag him there.he can cry abuse.. then we are the ones in trouble. She has asked numerous times for help. ie. Have them come take him. That's not happened till the day they came and took him. There is so much to this really and it blows my mind. The last clinic we went to even they could not get blood work out of him at the hospital he was that uncooperative. Other factors are that she HAD respite care for him up till July he would go there for 2 weeks and be home for 2 weeks. Now one would expect while on care he would be with someone who knows what is needed to be done and how to look after a child of his needs.. this is not the case. They st drop him in what ever home . Past home I am not sure how trained she was . From what I have heard not very. This lady worked another job at a day care. Had him up at 5 am and took him to work before him going to school. But in the morning many times because of other ppl in the house he was UN able to get cleaned up. He also has a bowel problem and wears a diaper which is an issue she has tried to get looked at for many years with out and type of federal that I pin on the hospital for not following through.... But is another back to where I was .. Manu times he had been sent to school dirty UN cleaned below and unshowered. That is never an issue while home . She is very anal about his cleansiness . Also while in care he is free to roam where ever he wants long ad he is back for dinner.. this lead to him going places he is not allowed to be while at home. And also leads to many visits from him to his mother's work. And a few trips to emerg . The last incident while in care he broke both his arms at the same time. Honestly the lack of supervision he receives while in care is mind boggling.

      As for his reaction when they showed up to his school..he ran away. Called 911 and said the ministry s trying to kidnap him . It is almost like a joke to him though I think he maybe seeing the serious of it because we have told him he may not be allowed home again once the court bit is done. Bit for now he comes after school then goes to the home for dinner. Which immight add is a home with no knowledge of PKU and he is showing her how he is to eat. Not to mention she was not prepared to have a teenager in a diaper and as for food ... They take him yet expect her to provide every thing he is in need of they take her food formula even diapers.if they want him that bad why are they not prepared to feed him and stuff with there own stuff instead of dipping into a single mothers fund. And if this child is in such danger why is it that he is here everyday. Not that he is not wanted her wed prefer him home but why is it allowed if she is such a bad mother that they have tobtake him away. It is very distroighting for her. Seems instead of working with her they fight against her. It is a 3 hour drive to the hospital where he is to go plus over night stay yes she works but s not a high paying job and she's a single mother with no child support. As for counciling he Haas had some but notalot. We tried to adress those issues in the last clinic and we where just rushed through. Social services sent him to shrink he had on appointment and in less then 15 min tried shoving mood control pills down him... Week later that shrink was canned . It just seems he is falling through the cracks is very frustrating

    • I don't believe that being two months behind on blood work is a reason the take a child our of a family. If he's been to several clinics, it could mean that they couldn't keep track when he was in which clinic and think he has missed a lot more appointments.
      I can't imagine how this kind of foster care is supposed to help. He is neither getting any counselling, any kind of supervision, nor adequate medical care. At least his blood results will remain bad and show that the care system is not helping. You should collect evidence of this neglect, statements from the school that he arrived dirty, for example. Then you should get in contact with your national PKU support group/society. They will know whether this is a recurring problem or just a crass exeption and could help you get in touch with a lawyer specialized with forster care problems or medical problems. You should also be able to show the social workers you are trying to improve the situation, like looking for a new councellor, one that is specialised on children with behavioural problems and specialized on dealing with medical issues as well. Maybe the PKU society could help with that as well. (Here, I just googled for a Canadian Support Group.)