when/how should i tell my child?

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when/how should i tell my child?

Postby Amelia » Fri Nov 27, 2009 12:33 pm

hello,
my 8 year old daughter has been diagnosed with TMAU - the urine analysis showed that it was mild. i had noticed underarm odour and bad breath since she was 3! at the moment she's not getting any comments from school, and i control it with daily baths /clean clothes / deodorant / diet - but i just don't know when or how to tell her about it - because i'm sure she'll get self-conscious as soon as she knows about it, whereas now is blissfully naive! but with kids, the earlier they know about something the more accepting they are. any thoughts / advice? thank you.
Amelia
 
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Re: when/how should i tell my child?

Postby Donald » Fri Nov 27, 2009 4:09 pm

Hi, Dublin Mother,

Is your daughter's odour noticeable to anyone other than yourself and your immediate family? I have asked outsiders if they can smell me, and the answer always seems to be no. This is even true in the confined space of a car. Yet, my wife and I are acutely aware of the smell. If people don't comment, it may be that they are not aware of any smell. If this is the case, don't put an additional hurdle in your daughter's life.

Best wishes.

Donald
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Re: when/how should i tell my child?

Postby bigvern » Sat Nov 28, 2009 12:07 pm

thats a difficult one, my own experience is the reverse on Donalds in that I can not semell the odour myself, neither can my wife but others can.

At one stage I did tell my old work colleagues about tmau and then asked them to tell me when they could smell it, I was keeping a diary of this along with what I was eating and when I specifically asked them to tell me when they could smell it I had a lot of people who said they could, I think in the adult population many people may not tell someone for fear of offending them. Children are a lot more starightforward and I would expect them to tell someone if they smelled and I understand your concerns - I would try and dicsus this with your GP if they are understanding but I would agree with Donald that at this satge you don't need to tell her, but I would certainly speak to the head and give them the details so they can keep and eye on any comments etc. and you can decide from there.

Out of interest where did you get diagnosed?

Good luck
bigvern
 
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Re: when/how should i tell my child?

Postby Amelia » Sun Nov 29, 2009 8:49 pm

thank you both for your replies - no, only once has someone else mentioned it, and only on rare occasions can i smell her - usually i can just get the odour from her clothes when i'm putting them in the wash. so i suppose until she says that someone at school mentions it, then i stay quiet. but if this worsens at puberty and i have to tell her then, i wonder will she ask how come i knew about it for years and didn't tell her? but then, i'm sure whatever you try to do for your teenage children, they say it's wrong!
how i got her diagnosed? - i knew since she was 3 that something was strange, so did lots of reading / internet searches, and finally went to my GP with the facts. my GP had never heard of tmau but was really understanding (it may help that i work in healthcare myself), and our local children's hospital happens to have the national metabolic centre, so it was easy to get referred and tested.....in that way i was extremely lucky, especially when i read about how other members of this group have been disbelieved and pushed around!
Amelia
 
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Re: when/how should i tell my child?

Postby bigvern » Mon Nov 30, 2009 8:52 pm

It's good you have an understanding GP - I to have a young daughter and have had a genetic test doen though the national DNA counselling service which confirms she may get transient TMAU (I already knew this sue to the fact that its Autosomal recessive, but she also has a slightly defective mutataion from her mother as well). I belive that hormonal issues can execarbate the problem. I haven't really thought about when I'm going to tell her as it's some way off but I understand your concerns which will, no doubt, become an issue for me as she grows. I would follow your own instinct - advice from others is good - but only you know your child and we all tend to have slightly subjective views as this is such an emotive issue.

Hopefully as the condition becomes more widely known about then people will be able to get diagnosed more easily. I do have the fear that shifiting the stigma will be as difficult as the stigma still attached to depression by a significant number of people.

Sincerley hope whatever you decide works out in the best way for you and your daughter

:D
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Re: when/how should i tell my child?

Postby DanieJ » Mon Dec 21, 2009 8:47 am

I have an 8 year old son who was officially diagnosed 3 years ago. We have told him (with the Doctor's support). He was fine about it at first. We have not gone into much detail. He is beginning to bombard us with questions now however! (And gets a bit confused as to why he doesn't feel ill). He has a particularly severe case so it is important he knows. I would talk to your daughter's medics about how she is and how she can understand information. Hope this helps. I don't think there is any correct answer. You know you child and how much info she can handle.
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Re: when/how should i tell my child?

Postby Tinkerbell » Thu Jan 07, 2010 11:14 pm

Hi, I've just joined this site. I was diagnosed with TMAU2 a couple of years ago and if I'm being honest I haven't changed anything about my lifestyle or eating habits however I am now at the stage where I am noticing symptoms in my children. It was particularly bad over the summer with the heat overnight and I would have to bath them every morning before school. I haven't had them tested yet but I think I will need to soon just for confirmation. I can smell it most the day after they have eaten things like fish pie, bolognaise sauce and feel so guilty that I have passed this on to them (I know things like fish is a persecutor but they really enjoy it and I just think they are too young to be on any kind of diet). I can't even imagine discussing it with them, they are under 10 yrs old.

My own GP doesn't even know I have TMAU as I eventually went down the private testing route and even though my results came back positive for Secondary TMAU I haven't taken my results to the surgery. I guess I figured there was no cure so what was the point but I really need to address this for my kids sake as I don't want them growing up as confused as I was!! I was aware of how different I was from about the age of 12.

Are there many parents on here that have children with symptoms and can you please let me know how you have approached this with your kids.
Tinkerbell
 
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Re: when/how should i tell my child?

Postby bigvern » Fri Jan 08, 2010 5:50 pm

Hi Tinkerbell,

I would really urge you to take the results to your GP - tmau can be managed to a degree with antibiotics (see the faqs section) though I don't know if this would apply with children. I agree that they are too young to diet, but a dietician may have some ideas without it being tooo restricitve for the children,, your gp should be able to refer you if you wanted it..

I have a 2 year old who has been diagnosed through a blood test (gene sequencing I think) so I know she has it though I haven't noticed any symptoms yet - having said that I'm one of the ones who can't smell it on themselves.

What were your test result readings out of interest???

Good luck!
bigvern
 
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Re: when/how should i tell my child?

Postby Tinkerbell » Fri Jan 08, 2010 10:11 pm

Hi, not sure how to interpret the results however this is how it reads:

Trimethylamine (TMA) *42.3 umol/mmol creat 2.5 - 10.9
TMA-n-Oxide *590.3 umol/mmol creat 17.0 - 147.0
TMA/TMA-n-Oxide 0.07 0.05 - 0.21

I only know I have Secondary TMAU from the text so not really sure if I have it weak, medium or strong any advice would be appreciated. I am also in the bracket that i can't smell myself!!! It's a very confusing and isolating condition!!!
Tinkerbell
 
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Re: when/how should i tell my child?

Postby bigvern » Sat Jan 09, 2010 2:54 pm

Hi,

I beat you !

My post load results were

TMA 51.8
TMA-n-Oxide 81.8
TMA/TMA-n-OXIDE 0.66

pre load results were

TMA 25.4
TMA-n-Oxide 38.6
TMA/TMA-n-OXIDE 0.63

Mine is 51 and I think I remeber the Dr saying that was pretty high - even for people with TMAU (the reference range is 1.5 - 11 umol/mmol creat) but that was a post load sample - I'd been eating loads of eggs etc! which I really enjoyed.


My pre load of 25 wasn't too bad expecially as I was'nt on a super strict diet or anything

I think its the ratio of TMA/TMA-n-OXIDE 0.63 that means have TMAU1 (and the fact that the ratio doesn't change mcuh between tests) ..

did you have any preload results ?

I
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