PKU and weaning

[FirefighterPennyMorris]

I'm new to Mumsnet, but have been lurking for a while. However, I was wondering if anyone had experience with PKU and would be able to help with weaning advice?

PKU is a digestive disorder which means they can't digest protein. My godson has it and his mum is really struggling and it would be helpful to talk to someone who has or is going through it.

Thanks,

Is she in touch with the PKU support group, FFPM? It's www.nspku.org/ There are a lot of metabolic disorders out there but PKU is the "common" one so there should be a reasonable community who have gone through the same problems and have answers for a lot of them.

My DD1 has a different Inborn Error of Metabolism - bit rarer and unfortunately not so easy to fix. But yes, weaning was hard work.

Best not to call it digestive, btw. People tend to hear that and think: "oh it's like an allergy or lactose intolerance" (not that allergies are digestive but ykwim) and think that if the child hasn't keeled over within 5 minutes of eating, then it must be all right, or the worst that could happen is a mild rash or a tummy ache. Whereas with metabolic disorders the damage is slow and cumulative and permanent - and you could give the wrong thing to the child daily for months without any obvious signs - so people need to understand that it's a different class of thing to allergies and intolerances.

Thanks for responding. I'm so sorry your DD1 has that - PKU seems hard enough and at least there is food specifically for it.

Thanks for the advice - I'm kind of on the sidelines, but will be aware of the digestive / metabolic distinction for the future.

My friend went to the NSPKU conference this year and has a few phone numbers of people, but is nervous of ringing as she is very emotional about it. However, I will encourage her to call them.

Does your godson have a PKU nurse? I teach a child with PKU and the nurse has been fantastic.... came into school and did training with me and TA, did loads of work with the child on foods he could eat and couldn't eat. (Trying to get the child to begin to become more independent as he is on his way to secondary school)

Our SENCO is able to contact the PKU nurse directly but I suspect the parents can too.

I'm puzzled that the NSPKU don't have a forum on their web site - our support group does, and it's smaller! It's a lot easier to lurk on a forum for a bit and then post specific questions than cold-call someone.

In her shoes, I'd have a look on the PKU forums of different countries, bearing in mind that it may be managed slightly differently overseas and not to worry too much about the differences - the UK is actually a bit ahead in treatment of my DD1's disorder so where we differ it's usually for good reasons. But there will be a forum out there, somewhere, with people posting about the same sorts of problems as she is having.

Thank you both. He has a dietician, but not sure they have much actual experience of PKU either. I'm not sure about a nurse - will check.

Checking the websites for other countries is a great idea and one we hadn't though of, so will try that too. I was surprised that there wasn't a forum about it here, but suspect you are right and there will be a forum somewhere!

Hi. My son also has PKU and is nearly 8 months old so we are currently going through the weaning stage at our house as well. If you godson's mum is still wanting to talk to someone about it she can message me.

Thanks :)