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Transient childhood TMAU

PostPosted: Mon Nov 13, 2017 7:01 pm
by imjd
Hi All

I think my one year old may have TMAU.

The NHS website states:
Some children with trimethylaminuria may only have a temporary form of the disorder that suddenly clears after months or years.

Has this happened with anyone’s children . Is this really true?


Re: Transient childhood TMAU

PostPosted: Thu Dec 07, 2017 10:29 pm
by Nika

It is really true!!
I have experienced it myself. I suffered from a fishy body odor from the age of 11 to 16.
Now I'm not suffering anymore.

Here you can find a case report about a 7-year old girl:
https://jmedicalcasereports.biomedcentr ... 1947-8-328

Re: Transient childhood TMAU

PostPosted: Sat Dec 09, 2017 5:04 pm
by imjd
Hi Nika

Thanks so much for taking the time to reply.

If you don’t mind me asking - how strong was your odour and where did you smell from? My son seems to
Smell from his hair. It is not a very strong smell and I have to purposely sniff him to smell it.
It also can be there one minute then 10 minutes later no smell at all.

In your case did one day you just wake up and the smell go and never come back.

Did you have any tests done for TMAU or did the doctor help at all?

Thanks a lot

Re: Transient childhood TMAU

PostPosted: Sat Dec 09, 2017 6:14 pm
by Nika
Hello imjd,

my odour was quite strong.
I do not know, from where the smell came from. Probably out of the skin, breath…
No, it wasn’t like that. It was more like a process. And yes, the smell never returned again.
I haven’t been tested. People were showing and telling me that I have got a ‚fishy body odour‘.

Re: Transient childhood TMAU

PostPosted: Sat Dec 09, 2017 7:02 pm
by imjd
Thanks nika for your quick reply.

It’s such a crazy disorder and really hard to get your head around.

Each time I present him to medical professionals he does not smell.
I get the impression they think I am imagining it. However he is my third child and my two other
Children have not had any odours about them at all.

I am clinging on to the fact it may be transient and that maybe he just has a delay
In the enzyme needed as his smell has improved over the last couple of months .
All though it could be now summer has gone and he does not sweat as much.

I just pray for the day I wake up and the smell may be gone totally

Re: Transient childhood TMAU

PostPosted: Sat Dec 09, 2017 9:41 pm
by Nika
Yes, that’s possible.
There are two genes coding for this enzyme. The FMO3 gene is primarly expressed in adults. And the FMO1 is primarly expressed in young children. So there is going to be a switch of those genes. As the child gets older the FMO1 expression decreases and the FMO3 expression increases.
I would suggest you finding a good biochemist. They really do have more knowledge about genes, gene expression and so on than doctors do.

Re: Transient childhood TMAU

PostPosted: Wed Dec 13, 2017 6:47 am
by imjd
Hi Nika

I do really appreciate you taking the time to reply.

I have been researching as I have been every day since this started that
FM03 expression switches on between birth and 2 years of age. My son is now 15 Months
So maybe his has not switched from FM01 to FM03 yet.

He is currently being seen by a immunologist because his immune system is delayed it will eventually get
To where it should be but sometimes can take up until age 5 to fix itself. Maybe this could be linked.
Hopefully he may be like yourself and will gradually loose the smell.

Myself and my husband and our other two children age 7 and age 3 snow no signs
Of TMAU. Do you think that this means if it was TMAU it is unlikely to be primary.

I am sorry for all the questions but I really have no one to discuss this with.


Re: Transient childhood TMAU

PostPosted: Thu Dec 14, 2017 6:35 pm
by Nika
I have read an interesting paper from Mayatepek and Kohlmüller ‚Transient trimethylaminuria in childhood‘ from 1998 (Acta Peadiatr). This article describes a 4-year-old boy, who had been smelling from the age of 18 months. The smell had been noticed by his mother. At the age of 5 the odour disappeared. The cause was/is unknown. Transient trimethylaminuria was diagnosed.

When you look at the statistic probability of having tmau that does not resolve with age, then this is far much lower (from a statistic and genetic point of view) than having tmau that resolves. I mean the probability of having tmau that disappears is higher than tmau that does not resolve.

Feel free to ask any questions. I’m happy when I can share experiences and information.