Lost mommy

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Lost mommy

Postby mommy » Tue Apr 05, 2011 2:09 pm

I´m from Portugal. I´m a mother of a baby boy (17 months).
After several months of anxiety and concern a few weeks ago it was diagnosed TMAU to my son. We're a little lost and worried about his future. The doctors did not properly guided us.
I don´t know which foods rich in choline should I avoid.
I think the milk (baby's milk) may be causing the smell. Is there anyone who has a baby under these circumstances?
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Joined: Tue Apr 05, 2011 1:56 pm

Re: Lost mommy

Postby bigvern » Thu Apr 07, 2011 12:25 pm

Hi - welcome to the forums. :D

We have a daughter who has been diagnosed with TMAU (via DNA testing) but is not displaying any symptoms (yet) and we do not have her follow and special diet. When she starts displaying symptoms then we will consider a diet with the guidance of a dietician.

One of the ways to manage the problem is via diet (low choline) and also antibitoics. see http://www.tmau.org.uk/index.php?option ... &Itemid=62
for details.

It may be worth asking your DR to have a read or print it out and give it to him so he can help you further, this may also help your DR:

http://www.tmau.org.uk/index.php?option ... &Itemid=41

I have TMAU myself - if you have a look through the forums there lots of posts on diet but I would urge you to not to follow ANY diet without consultation with a qualified dietician - otherwise there could be serious health implications.

Sorry I Couldn't be more helpful
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Joined: Thu Jun 25, 2009 5:37 pm

Re: Lost mommy

Postby mommy » Fri Apr 08, 2011 10:27 am

Bigvern, I appreciate your help.
It seems to me that the medical team is monitoring my child is not doing it the best way. I'll schedule another nutritionist to see if they give me better advice.
I know it's hard to apply a strict diet to a baby, because it is growing, but sometimes the smell is too intense.
An adult with TMAU usually drink milk?
Is there some kind of fish that will not cause the odor?

Thank you
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Joined: Tue Apr 05, 2011 1:56 pm

Re: Lost mommy

Postby smelly » Sat Apr 09, 2011 1:15 pm

Hi. You can get more information (for yourself and your doctor) by looking at ‘TMAU facts’ and ‘Web links’ on the home page of this site. But my understanding (non medical) is that milk should be avoided and fish (some fish is supposed to be less of a problem – ‘fresh water’ fish was the distinction but I couldn’t find for sure which fish this would be so I avoid everything that lives in the water, full stop!) If you cant follow the links I mention, just read through the older ‘forum’ posts under heading 'diet' – maybe starting at the oldest ones first since they have the most basic info on them. I wouldnt do anyhthing without your doctor approving it though, since even us adults have experienced some disadvantages health-wize from following a strict TMAU diet so I would be VERY careful if trying to apply it to a child. And also, for some the diet makes little or no difference so you might be depriving your child for no good reason. If someone is going through a period of life where there is a lot of hormonal change (such as when growing rapidly when young) this may produce the odour more strongly and the diet may have little affect, perhaps?
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Joined: Wed Dec 09, 2009 7:49 pm

Re: Lost mommy

Postby mommy » Mon Apr 11, 2011 1:50 pm

I appreciate the help. I'll follow the advice. Sorry for so many questions, but confirmation of the diagnosis left me a little anxious. Thank you.
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Joined: Tue Apr 05, 2011 1:56 pm

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