please help

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please help

Postby Fenella » Sun Aug 04, 2013 5:41 pm

Hi I have read all the posts old and new. It just seems so desperate =(. My daughter is 4 and I think she has tmau! It breaks my heart. When she was coming out of nappies she wet herself and the smell of rotten fish was so over powering I threw the clothes outside. My husband thinks im mad for saying she has this
I went to the doctors and they said well it so rare she won't have it I said somebody has to! He took blood test which came back ok.the smell seems to be ok at the moment but because she is going toilet in the toilet she is so lovely I feel that without knowing me and her dad hold the gene and we have ruined her life. It would be nice to speak to someone I feel so isolated =(
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Joined: Sat Aug 03, 2013 12:48 am

Re: please help

Postby dodge1980 » Tue Aug 13, 2013 11:58 pm

Hi Fenella,

I am new to this forum and don't have kids but I empathise with how your feeling. As a kid though I was backwards and forwards to the hospital with my many ailments. The one thing that kept me going though was the fact that my parents (particularly my mum) never made it out to be a big deal. That was tough for them as I was a pretty sickly kid. But the one thing I remember most and that has kept me going is my parents. I am 33 now and believe it or not despite the amount of time sat in hospital waiting rooms as a child (and adult) I now work in one. At 4 your beautiful daughter will be looking to you for cues that everything is fine and it is. From what you have said (and if I am wrong or I sound like i'm trying to teach you how to suck eggs I apologise) she has had one episode of a really smelly nappy, that could have been due to a urine infection. From what I have gathered from everything I have read TMAU doesn't make you ill, but the worst damage it does is psychological. And that's because people feel alienated. The best advice I can offer you from someone who has gone through 20years at least of wondering why I smell so bad at times is to make your daughter feel like she's the super kid she sounds and don't concentrate too much on the problem.

One bit of practical advice, I was told the same thing by my doctor, it's unlikely but..... Then again this was coming from a doctor who had to google TMAU to find out what it was. He then told me the rubbish statement that a urine test isn't accurate to test for TMAU. I have since had a urine test sent to the only lab in the UK that tests for TMAU and I have a positive result as of last week. I don't know where you are but the lab is in Sheffield UK. Knowing this is what I have and doing something about it is the best feeling ever. It's early days for your daugther yet but at least you know this is a possibility and can help her find ways to manage it.

And last but not least, please please please do not beat yourself up over your daughter inheriting a faulty gene. You will drive yourself nuts thinking like that. Like I said before if you don't concentrate on the bad stuff she won't either.

My heart goes out to you. I have suffered through all sorts of unkindnesses because of the effect TMAU has had on some people around me. But thats not the TMAU's fault or mine, that down to people who don't know how to do the nice thing when it comes to this particular problem.

Please don't let this problem isolate you and your daughter, it will only make the situation worse for both of you.

I hope this helps. Take care.
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