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Advice needed

PostPosted: Wed Jul 05, 2017 12:53 pm
by imjd
Hi I am the mother of a very happy and healthy 10 month old baby boy. For the last few weeks I have felt like on odd occasions I have smelt a funny kind of smell from his hair. I was unsure to what the smell actually smelt like but my mum said it was fishy. So I search this into google and the only thing I can find is that he might have TMAU. A syndrome I had never even heard of.

I was hoping someone could answer some questions for me.
- when did your TMAU first get noticed by your parents and how?
- if he has TMAU would he smell of fish all the time?
- would more than his hair smell of fish?
- would washing his hair take the fish smell away totally if he had TMAU? (If I wash his hair the smell goes and can not be smelt again for a long while).

I don't really know what I am hoping for here, I feel the internet can sometimes always give the bad side of things. So experience from people who have actually dealt with this situation for me would be great, either sufferers or parents of children who have the syndrome.

thanks a lot

Re: Advice needed

PostPosted: Tue Jul 11, 2017 5:28 pm
by admin

- when did your TMAU first get noticed by your parents and how?
IF it is TMAU, depending on the type (primary or secondary) and other factors it can be early onset. some people can smell it in very small amounts, others have trouble detecting it at all.
also see amongst others;

- if he has TMAU would he smell of fish all the time?
can be transient, mine is dependant on stress, diet and other variables

- would more than his hair smell of fish?
yes in most cases, but it may be much more muted so difficult to detect, but my hair was worse, perhaps it's just because the hair is holding on the excreted tmau more than the skin

- would washing his hair take the fish smell away totally if he had TMAU?
for a short while it may, but it didn't work for me, I excreted tmau all the time

as you will see from my brief answers, there are many factors, including both genetic and environmental which result in a wide variety of symptoms. I can't stress enough how this can vary from individuals.

Your best bet is to read through the main website and then the forum, the search function on the forum is great if you are after anything specific.

Re: Advice needed

PostPosted: Sat Oct 14, 2017 7:48 am
by Louise

I don‘t have advice, but I do have empathy. I just had my baby tested and the results came back positive. I expected it, but am still crushed. If her symptoms were to stay as they are, then the diagnosis would be nothing at all. It is fear that they will worsen over time that is driving me crazy.

To answer your questions. I first noticed when she was 11 months, and I could smell an oddly, faintly fishy scent on her hair. It came and went, but shampooing had little effect.

Good luck to you and your son!

Re: Advice needed

PostPosted: Wed Oct 18, 2017 12:15 pm
by imjd
Hi Louise

Thank you for your reply and big hugs to you and your little one.

How did you manage to get your daughter tested? My son is now 14 months old. The smell has died down a lot since changing his milk to organic milk (which I read up on other sites can cause unpleasant body odor in babies and children) but it still is there now and again briefly. And at the moment he has chicken pox and the smell is strong. So the smell seems to be worse when he is ill.
Do you find this with your daughter when she is ill the smell gets worse? His smell is always only from his head. No where else.

My son has other health issue at the moment with his immune system so he has been under a pediatrician and I told her of my concerns. She looked at me like I was crazy but I think by the end of the appointment she actually felt sorry for me and realized my worries are real. She has done blood tests for certain things like amino acids and a couple of others that can indicate metabolic conditions but from what I can read up a special urine test has to be done to confirm TMAU so I don't really know what use these blood tests would actually be.

I feel the exact same as you....if he does have the condition and his symptoms were how they are now life would be pretty normal for him. Because as much as he does have this smell you can really only smell it if you specifically go up to his head a sniff him (which i find myself doing constantly). and at the moment it is not a particular nasty smell. Its just odd. But obviously I know with TMAU it can get worse with age and other factors.

I feel at such a loss. I search and search the internet everyday for any other reason that he may smell other than TMAU. and unfortunately I can not seem to find any other reason.

Would love to hear back from you. xxx

Re: Advice needed

PostPosted: Tue Jan 09, 2018 8:01 pm
by Louise
I’m so sorry to just be replying now! I didn’t realize that you’d written. In answer to your questions, I was insistent that she be tested, and was referred to a specialist in metabolic disorders. I suppose I was lucky?

She definitely smells worse when she is ill. There are days, and weeks when I can barely smell a thing (and like you, I am constantly checking!)

Any update from you?

Re: Advice needed

PostPosted: Thu Jan 11, 2018 7:34 pm
by imjd
Hi Louise

No update from my side. He had his immunology appointment end of December.
I mentioned this problem to the consultant and she said she does not think he will have the condition.
No one seems to take it seriously. Because he does not smell when they see him (which is typical) they
All just say we do not think he has it.

I know deep down myself he does. His symptoms are the same as all other children I have read about.
I have two older children neither who have had any types of odour no matter how much they sweat.

As much as I am scared to find out I need to get some final answers because I spend
Each day researching TMAU looking for answers. It is taking over my life.

Do you know what type of TMAU your daughter has has is it genetic? Did they say anything about
If it is mild? Will you get regular check ups with a consultant for help and advice on how to control it?

I have been reading a lot on childhood transient TMAU. And have spoken with a woman
On here who has it from Aged 11 and it disappeared at 16 never to return again.

It has been so nice just being able to talk to someone else who understands what I am going through