My 6 year old has TMAU

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My 6 year old has TMAU

Postby Feetan » Mon Nov 21, 2016 9:03 pm

Hi everyone - what a select group!

My daughter has had body odour from the age of 3. It's taken a long time to find out what she has. She has no idea she has it, she doesn't know she smells and we have so far managed the odour with a child's crystal deodorant and constant vigilance as we haven't wanted her to be bullied at school.

As we are just now starting down the path of treatment and she's seeing more consultants we have to consider how we speak to her about this. We do not yet know if she has TMAU1 or 2. We will wait to get the results before we do anything.

Any advice would be appreciated on how to handle this with her.
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Re: My 6 year old has TMAU

Postby sweatybetty » Sat Dec 10, 2016 10:19 am

I am really sorry you and your daughter are going through this difficult situation !

I was not clear from the post if your daughter has TMAU and you are now trying to identify whether it is TMAU1 or TMAU2 or whether the test are to find out if your daughter has any form of TMAU.

There is little balanced information about this condition (be careful of some of the sites). This is one of the best places for help and obviously if you find that you have a confirmed diagnosis to see a specialist consultant.

As adults we are advised to eat a low choline/TMA diet but I would worry about the nutritional implications of this for a young child.

I have tried to copy a link which is to a documentary about TMAU/FOS where one of the people followed is a young boy. This is quite an old documentary (2007 I think) but it is one of the more detailed documentaries on the subject and I think it gives a really sensitive, detailed and nuanced look into the lives of people impacted by the condition.

Recent coverage and articles in the redtops/cheap womens mags have in my view sensationalised the condition whilst providing minimal information. Sorry the lack of considered media coverage of this is a real bugbear of mine !

Obviously if your daughter is diagnosed with this then it will be really important to ensure you both get the support both medical and psychological (if needed) to ensure the medical and psychological impact of the condition does not adversely affect you daughter's social wellbeing and confidence.

I am not in this position - am a middle aged woman dealing with the same issues ! However I believe I had this as an adolescent and things were difficult so I understand your worry. Not sure if there is anyone on here who has children with a diagnosis ?
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Re: My 6 year old has TMAU

Postby imjd » Wed Sep 06, 2017 7:15 pm

I know this was posted last year but I am going crazy with worry over my one year old son.

He smells. I wouldn't say of fish but he has a distinct funny smell. I first smelt it from his hair.
Now I am not sure if I can smell it from his breath. I do not know if Am imaginging it as I am worrying so much. I can not smell anything from his urine. It is not a unbearable smell just a odd smell. And everything I have read babies shouldn't smell.

I have searched and searched the internet and tried to pin point any other reason other than tmau.
He has had a recent blood test that has said he has an abnormal red blood cell count. Other than this he seems fully healthy.

What kind of smell did your daughter have? Did your doctor take you seriously? Where did you smell the smell on your daughter?

Does she still experince this now? I have read on the NHS website that some kids have tmau which then just disappears.

How is your daughter now?

Please someone help me try and understand what is going on.
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Re: My 6 year old has TMAU

Postby Ruby » Tue Sep 26, 2017 3:03 pm

My children have a smell that is mainly found on their breath, it is sort of a pungent odour that can change to a gassy smell as if someone has passed wind and sometimes it can be fishy but at all times it is a strong smell. I tested positive for tmau after they were born and I have no doubt that they have this disease. I don't know whether to speak to the doctor and get them referred yet as they are so young and I don't plan to change them onto a low choline diet anytime soon as I want to raise healthy children.
If you can printout a few pages from this website as well as from the NHS page that concerns tmau you may find that your doctor will listen to your concerns about your little boy. The worst part is not knowing what's going on, so I think if they can do the urine test for your little fella and it comes back positive then it will help you prepare for how to manage the condition in future.
I hope that helps a little bit, you are not alone and neither is your son xxxx
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Re: My 6 year old has TMAU

Postby imjd » Fri Sep 29, 2017 7:10 pm

Hi Ruby
Thank you so much for taking the time to reply.
My son was referred to a paediatrician for other reasons but I raised my concerns with her.
She kind of looked at me slightly crazy but by the end of the appointment I think she felt sorry for
Me and could tell my concerns were genuine and how worried I actually was.
She said it's not a test that they do at our local hospital but she would ask the team if they would be prepared to do it to put my mind at rest. In the meantime she tested his urine for amino acids which apparently can be a indication of a metabolic disorder. I am awaiting the results.

To be honest in a way I am scared to know. I am scared to get a positive result.

After searching the internet I found some mothers saying there babies had problems with bad adult type body odour and after switching them onto organic milk the smell went. So this is something I decided to try. His smell did disappear for a couple of weeks now. Even whilst sweating his head hasn't smelt how it was smelling most days.

But there is just something in the back of my mind telling me he has tmau and my instincts are right.

How do you children cope? Do other people make comments? They are lucky to have a great mother willing to put there health first.

With your own tmau how have you found coping with it? Is it really as bad as some of the horror stories I have read. I am so scared for what his future might hold

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Re: My 6 year old has TMAU

Postby Ruby » Mon Oct 02, 2017 1:29 pm

Dear imjd,

that's interesting that you have changed your son's milk to organic and that he is now not smelly. I try to avoid any dairy products or animal product as a way to lessen my smell but if he is still drinking milk and he is no longer exhibiting a strong smell then I think that is a good sign. My boys started to get very smelly once they started to be weaned.

The last time I checked, all TMAU urine tests were sent to Sheffield children's hospital where they were tested by a gentleman called Nigel Manning (although he has retired and somebody else does it now) .

When I was diagnosed I had already come to the conclusion that I had the disorder/disease and just needed solid proof so that I could show people (medical professionals mainly) ''look it's here down on paper, I have this, so stop telling me it's in my head and let's get on with trying to treat this'' . I restrict my diet when I am feeling strong enough but most of the time I can't live without green veg, some cheese and chicken and I will usually smell the results of my meal on my own skin and breath the following day.

The kids are fairly oblivious to it all at the moment, they have no idea that they are smelly. I do bring smell into conversation sometimes and I will ask them if they can smell my skin/breath and tell me what they smell ; usually they will be completely honest with me which is great. I don't want to leave them in the dark so I tell them that ''mummy has an allergy to lots of foods as way of explaining why I always eat a different dinner to everyone else at the table. If they grow up knowing that I have suffered with this disease it might not seem so alien to them when I tell them that they have it. I am putting off telling them because they are so innocent at the mo, I want them to enjoy their childhood and not have to worry about things like that.

Nobody has said anything mean to the boys yet (that I know of) but I know that things will be said based on my own experiences as a teenager. I informed their school that they may have this disorder so to watch out if they are being picked on etc. Also I don't want to be seen as a neglectful parent , the way they smell may indicate that I am not washing them or brushing their teeth( but they are probably the cleanest kids at that school, they have showers and fresh clothes every day!).

This is not a very pleasant disorder/disease to live with but, due to there being no information or diagnosis in my early years I struggled to be listened to and had to figure out and fight for myself to find out what it was and then get a diagnosis. Your son is way ahead because if he does have it, there is already a lot more people out there with an awareness of this disorder and there are also ways of dealing with it that were not known about even as little as ten years ago.
I am still learning to live with it but I have travelled, worked, partied, made a home, made friends, found a lovely man who then married me and bore two beautiful boys. I have a lot in my life that is good which is what I try to focus upon as well as not letting the disorder be the be all and end all; there is a lot more to me than a faulty gene and I will continue to go out into the big wide world to prove that.
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Re: My 6 year old has TMAU

Postby imjd » Wed Oct 18, 2017 12:29 pm

Hi Ruby

Sorry it has taken so long to reply I have three children and we have been hit with chicken pox in our house.
Your reply actually brought tears to my eyes. You are so positive. I feel lucky to have spoken with you.

Everywhere I read it says this is a really rare disease but there seems to be so many people suffering with some sort of form of it and the doctors do not
seem to know anything. My sons pediatrician actually said to me I am more than convinced your son does not have this condition. Even though when I asked her if she had ever treated any children with TMAU the answer was no. And this was all because on this particular day he did not smell. Everything I read says until children hit puberty they should not smell and their sweat should not smell and she can not give me any other reason as to why he would smell. I actually felt like I knew more about the condition than she did from just months of research on the internet.

Anyway in the meantime his blood tests that she ran for indications of metabolic disorders came back all as normal. however i do not think this is a particular help because TMAU is done by a special urine test isn't it?

My mum is great. She helps me out with the kids so much i don't know what i would do without her. But when i mention that i think he may have TMAU she dismisses it and tells me not to be so silly. So its been great to have other people to talk to on this site.

I have not even discussed this with my husband. It sounds so silly the fact that he is his dad and he loves him unconditionally but i don't want him or anyone else to look at my son differently. He is my baby and i love him smell or no smell. I just want to protect him from this world that can be so cruel.

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