PKU - any other parents of children with this out there?

[CoolSam]

I've recently had baby Samuel, my second son, and he has PKU. My first son, Matthew, does not have it.

Is there anyone else out there with children who have PKU?

Not PKU- but my son is on a special diet- which includes avoiding aspartame. It is everywhere!!! Watch out for drinks at parties!

My nephew has it. He's about 10 or 11 now. What i've noticed is his mum has to bring food for him at any family gatherings. She mixes special drinks and he may eat just a plate of chips and eat something his mum provides instead of joining in with what the others are eating. Other than that he's a great healthy kid, playing soccer and computer games with all his mates.

What is the special diet for Jimjams?

Funnily enough, Samuel had his first set of jabs today, and I bought some 'normal' Calpol as the sugar free has aspartame in it, or it used to have apparantly it hasn't in the more recent batches! Fun eh?

I've heard about another PKU person today as well BigBird, amazing really when you think there are only 70 born in the UK each year.

I don't suppose there is any chance of your nephews Mum talking to me on this site is there? I would love to talk to a Mum who has been there seen it done it worn the t-shirt!!

Sorry what is pku?

He can't have gluten, aspartame (and other sweetners), MSG or yeast extract (as it has part of the MSG molecule in it), also can't have gelatine, or dehydrogenated tapioca starch (!!!).

It's for autism. He could do with coming off casein really as well (milk) but his diet isn't varied enough so I give him enzymes to break down the casein.

PKU stands for phenylketonuria - an enzyme is missing which means that the amino acid tryptophan (if I remember correctly) isn't broken down properly. All babies are tested at birth as untreated it leads to mental retardation. With a tryptophan free diet development is normal.

Remembered incorrectly- phenylalanine- not tryptophan- sorry!

I feely feel for you, it must be really hard. Hope everything goes alright for you.

I don't think they have web access at home. I don't see them very often but can ask more questions the next time I do (or I can ask DH - he might know more as it's his side of the family). I may see them at a family gathering in May and I will try to find out some info.

My dd is at school with a little boy with pku, he's a smashing kid but I know very little else about him, only that I do know that mum has trouble finding him a varied diet he doesn't get bored of too quickly.

I used to care for a man in his 40's who hadn't been diagnosed with it at birth, or for a long time following, consequently his diet was not restricted and he had many associated problems.

Feeling for you but dont think I can be of any use to you I'm afraid!

Yes, sorry I didn't explain in more detail about PKU initially, you know what it's like, babe in one hand, mouse in the other!

Thank you all for your comments and wishes to date, interesting to hear of the other situations and conditions going on out there. You just don't realise just how many different conditions there are until you come accross one yourself.

The biggest thing has been the shock of dealing with PKU since Mat didn't have it, and I had almost no idea what it was or what it meant.

Although it is great we test for it so early, (or test at all, alot of countries still don't test for it i.e. South Africa) and indeed absolutely necessary in order to catch it early to prevent problems such as brain damage, the old hormones were still so up in the air at 14 days post birth, so it was a hell of a shock all round.

The team supporting us up at Guys is second to none, and I will never complain about the NHS again! We have had nothing but great support and contact with one or two dietians at any one time over the telephone.

Pre-weening should be interesting, and I do think a varied diet once we get to this stage will be a challenge. I understand from others in this situation that I will become a cook! Just as well I've given up work for now then!!