Toddler just diagnosed

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Toddler just diagnosed

Postby stephi » Tue Feb 08, 2011 1:16 pm

Hi, My son is 17 months and he has just been confirmed and diagonsed with TMAU. I started to smell a fishy smell from his hair when he was a baby,from 6 months onwards after he started on solids. We have been given diet information from the hospital and we now have started to cut out and avoid certain food types which seems to be helping and he only has a very slight smell now and then. Usually from his nappies.

I have been reading many of the posts in the forum and it has just hit home what a life changing thing this is, it really is going to have a massive impact on his life. My husband and I have really not been too upset about the diagnosis, just thankful he is healthy and happy but I am started feel sad and anxious for him now. Coping with the social reaction to this.

I think this website will offer great support to us whilst Noah is growing up and would love to hear from other Parents of children and how they deal with it and any advice on diet,or products they find help mask the small...shampoo ect as we find his hair seems to smell the most!! He is teething quite badly at the moment too which seems to have made his small stronger.

Thanks,Steph x
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Re: Toddler just diagnosed

Postby PoetFire » Tue Feb 08, 2011 7:39 pm

Hello Steph. Has your son been genetically tested ? Humans don't fully express FMO3 enzyme until they are in their teens. Neonatal babies use FMO1 rather than FMO3, then it switches after birth. Maybe there is too much choline in his diet, though choline is very important in babies for development. I would email Sheffield Children's Hospital about this.
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Re: Toddler just diagnosed

Postby SmellyKelly2 » Wed Feb 09, 2011 11:23 am

Hi Stephi
I use Johnson & Johnson baby shampoo, which should help with his hair smell.
SK
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Re: Toddler just diagnosed

Postby stephi » Wed Feb 09, 2011 2:15 pm

He had a DNA test which showed he had inherited this condition genetically from myself and husband. We are quite new to all this so I am not aware of what FMO1/3 is? But surely should have been told about it at our hospital appointments? I am assuming that his smell will get much worse when he hits teenage years? Bit confused now? The DNA test did come back from Sheffield but we haven't had our copy come through yet so can study it fully then!

Thanks, will try the shampoo...we used to that when he was tiny so will go back to it and see how we get on!! Thank you x
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Re: Toddler just diagnosed

Postby flower » Wed Feb 09, 2011 4:17 pm

Hi Stephi,
I like your words : at least your sons health is not affected by this and that you are thankful and relived your son is healthy and happy.
You must be understanding and open minded parents . Your son is very happy and he will find his way in life with such a wonderful parents.
I hope this site will give you a lot of answers ...
Flower
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Re: Toddler just diagnosed

Postby PoetFire » Wed Feb 09, 2011 7:25 pm

Hi Stephi. Yes if he had the DNA test then I presume he will be FMO3 deficient. The DNA test can tell at any age. So little is known about TMAU, so I don't know if it will get any worse. The diet etc should help. On the plus side, who knows what will be possible in the next few decades.

There was a young boy in this TV programme who sounded a similar case. He is from the Birmingham area, I think ... http://www.youtube.com/watch?v=vwZmRvIDEec

Also. don't think that it is a rare problem. I think it is a lot more common that 'rare', so there will be many others in the same situtation. I think Sheffield Children's Hospital is associated with a charity for 'rare disorders' called CLIMB, but don't know if they have a TMAU group : http://www.climb.org.uk/

You will get a lot of support on this forum too
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Re: Toddler just diagnosed

Postby kittycat » Wed Feb 09, 2011 8:38 pm

Hi Stephi
Don't get too upset reading the posts, most of us have taken years to be diagnosed. Then, after finding out that we smelt in many brutal ways, our families invariably thought it was all in our heads! Your boy won't have any of that, with such caring parents. And you can guide him about what foods give him a problem. Also, his tum won't ever be in such a bad state of high tma and 'bad' bacteria. There's lots of probiotics for children over 6mths, but they're v expensive, maybe there's help, money-wise for a baby needing them? He should have them if he has to take antibiotics, but the specialist should advise you. The new USDA Choline data has values for baby food too. Also sulphur, and sugar high foods affect many of us. At least he'll never miss what he hasn't had, so won't have to give up a coffee/bacon sandwich addiction :) Maybe if you're offered some sort of counseling it would help you deal with how to ease him into schooling (whether to tell the teachers etc.) And they're finding new cures every day, it'll all be sorted by the time he's a teenager. Love kittycatx
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Re: Toddler just diagnosed

Postby stephi » Thu Feb 10, 2011 12:03 pm

Wow, what lovely posts!! Thanks so much for your support!!! All with with positive comments and helpful advice. I will take it all on board!! Thank you.
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Re: Toddler just diagnosed

Postby oldskool » Thu Feb 17, 2011 10:56 am

Hi Stephi,

it's brilliant that you've been able to get your son diagnosed so young! It made me smile when I read that you noticed the smell on his hair- my parents first noticed it the same way with me when i was a toddler. Given that there was no readily-avaiable information on TMAU when I was little (1980s), the only thing my parents did to combat the smell was to not feed me any fish or seafood. I didn't really sufferto any extend throughout my childhood; looking back i remember maybe only one incident when someone mentioned that my breath smelled like fish. I had problems around puberty, but I think that if there had been as much information about the diet/supplements/soaps etc as there is today, I would have been able to combat the odour much better, so Noah's really lucky in that respect!! Anyway, I'll stop rambling on; just wanted to give you insight from someone who's grown up with TMAU1 since babyhood :D
I'm sad to hear that it's making you sad and anxious; living with TMAU isn't always bad.. It has altered my lifestyle but I've managed to have a pretty normal life with it! (In fact, having TMAU probably got me to where I am today-I'm a scientist.. :o ) I wish your sont he best of luck!!

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