when/how should i tell my child?

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Re: when/how should i tell my child?

Postby Tinkerbell » Sat Jan 09, 2010 8:44 pm

No I only did the test once as I paid to do it through a private company at £285. The weekend before though I ate all the things that I had stopped eating like poached eggs for breakfast, then cod for my teas and I even threw a steak in there, for some reason red meat affects me quite alot. The bizarre thing was though that my little boy who was 5 at the time sat on my knee on the Monday (morning I sent my test in) and told me that I smelled different!! So even before I had the test results I knew that all those foods had affected me!! It is peace of mind to have the results though.
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Re: when/how should i tell my child?

Postby Amelia » Wed Jan 13, 2010 10:29 pm

regarding changing a child's diet - i've had a few meetings with our metabolic unit's dietitian / psychologist. they say that it's better to get her in the habit of eating the 'right' foods now, so that she won't really develop a liking for the 'wrong' foods....but i was quite upset about that, because unfortunately she really liked fish/green veg/eggs which I had previously drummed into her about being healthy! i also can't cook seperate meals for the rest of the family, so my other children/husband and I miss out on the fish/green veg/eggs as well.
another thing that worries me about the future is that if she becomes overly conscious about what she eats, is there an increased risk of an eating disorder when she's a teenager......do any other members have any thoughts on that?
thank you!
Amelia
 
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Re: when/how should i tell my child?

Postby Tinkerbell » Thu Jan 14, 2010 10:41 pm

I know what you mean as my little one loves fish and I cringe when she asks for it for dinner as I know the effect it will have however I like that she eats healthy foods. I can also understand what the dietician is saying by encouraging your child to develop their diet from an early age as children are easier to brain train than adults however I really do worry about the word 'diet' for children. I guess there has to be a balance in there somewhere!! I know that hasn't helped much but I'm still trying to figure this out myself, hopefully someone else can respond and help us out!!! :D .
Tinkerbell
 
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Re: when/how should i tell my child?

Postby susisu » Sun Feb 14, 2010 11:14 pm

Hi,
My 10 yr old son has been diagnosed with the condition. I told him straight away and he has been absolutely fine with it. I wrote an adventure story to help him understand which was very good. He knows all about genetics now lol. He is following the "diet" but we just refer to them as foods that are bad. He is absolutely fine with it and doesn't feel he is missing out because he knows why he is following the diet. I do feel it is better to be honest with children to a level that they can understand, it helps them to make the right choices and decisions. I personally feel that hiding things from them turns things into a battle/competition when you advise them not to have something or do something. It works for me anyhow! I suppose I put myself in his position, what if I hadn't been told and then the condition became unmanageable, I wouldn't have been prepared for that. Its a decision only you can make.

Sue
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Re: when/how should i tell my child?

Postby Amelia » Sat Feb 27, 2010 3:10 pm

hi sue,
thanks for your reply. it's really helpful to make contact with other people in the same situation. can i ask how you started looking for this diagnosis? were other children making comments to your son....was he aware of the odour? the psychologist i saw advised to give my daughter information as issues came up - so if she was getting no comments at school, to preserve her 'innocence'! but i definitely need to give her the facts before she starts to reach puberty. things are manageable at the moment, but i am worried about what puberty will bring. i also worry that if i tell her now, she'll talk to her friends about it, and they'll treat her differently even if up to now they hadn't noticed anything.
Amelia
 
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Re: when/how should i tell my child?

Postby susisu » Mon Mar 01, 2010 10:46 pm

Hi Dublin Mother,

I noticed symptoms from when my child was a baby but put it down to immature digestion. Sadly I didn't do anything about it then but he came home from school after having a fight with someone who said he smelled "fishy" This was after school menus were changed to fish most days (healthy eating gone mad). I knew about the condition as I have worked with someone with it. He doesn't have a problem now with the diet. I hink he has told one or two of his friends and they have been great, younger children generally are, but he keeps it mostly to himself. No one treats him any differently, they have all grown up with two very disabled children in the class and have been taught if you like that difference isn't something to be ashamed of. My son has a very active life and has lots of friends but I will just have to wait and see what the future brings. Incidentally he asks loads of questions about the condition and probably knows more than me! Regards....Sue
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