Ok.....here it goes....

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Re: Ok.....here it goes....

Postby silent_suffering » Tue Jul 17, 2012 10:17 am

Thank you for your advice Lisa. Everything you said makes sense, i know thats exactly what i should do. At the moment im feeling so down with this that i literally cant see my doctor. If it was just my daughter that had this i would be standing outside his door everyday until i got answers, but because i have this myself and i constantly walk around embarrassed and paranoid i cant bring myself to see him again- i must sound like a selfish horrible mum. I have had this for over a decade now and im still young in my mid twenties, to think i have years and years of this ahead of me makes me think i dont want to be here anymore. If i hadn't had children i know i wouldn't be here anymore. But day by day i just have to pick myself up and put a barrier up so no one can get close to me and get on with it the best i can, purely for my children. I just dont know how much longer i can go on like this, existing rather then living.

As for the diet i wouldn't dream of putting my daughter on it at her age, she is naturally slim anyway there is nothing of her. Plus its bad enough her having this without making her ill on top of it, she needs a normal varied diet. Like i said above there are a couple of things i try not to let her have but they are not necessites. The only thing i do worry about is not giving her fish, she loves fish and obviously its an important part of anybodys diet so i do worry what damage it could do cutting it out all together. Plus it also means my son will have to miss out on certain foods as i cant buy things and tell my daughter he is allowed to eat all the things she loves but she cant. Are some types of fish 'safer' to eat then others? I.e on a night where we know we will be home the next day.

Sorry if im depressing anybody with my posts, its just this literally is the only place i can speak openly and actually say it how it is rather then pretending this isnt happening and it doesnt exist.
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Re: Ok.....here it goes....

Postby Lisa » Tue Jul 17, 2012 11:08 am

First of all, no-one thinks you're a selfish mum, you are right, this is a very hard thing to live with, 2 years ago I was feeling exactly the same way you are now, I was suicidal, like you I've had this for over 10 yrs, and I couldnt get any answers, I had numerous tests etc etc, I was at the end of my tether, and only by chance I came across this condition, I got tested, read up on the conditio, and I talked on here, I asked even the stupidist of Q's, I wanted as much info as I could get, thru talking, on here, and with my GP etc, I began to feel a little better, not straight away, I'd cocooned myself away for so long it was hard to try and start living again, I'd hide in the house, not going out to socialise, turning down invites out with friends etc, then I thought, what the hell am I doing? Then I got angry, why should this bloody condition ruin my life, why am I letting it? So, I started CBT, and slowly I'm living again, I've been for meals out, I've been to shows, I'm enjoying myself, it doesn't happen over night, but, I can honestly say if you'd of asked me 2 yrs ago if I'd be doing the things I am now I'd of said no way! I'm no longing exsisting, I'm living.
Ok, say to yourself, today I'm having a bad day, just for today, dont look at the bigger picture, take it one day at a time.
You say your daughter has got 6 wks off? Maybe make this time your starting point, not today, maybe another day. Perhaps write a date down that you've hoped to have made an appointment by, and aim for that?
Set yourself tiny little goals, write them down and tick them off as you do them.
Take the kids to the park for 15 mins, walk to the end of your road and back, write down how you felt before, during and after, you'll be surprised how elated you feel just from doing little things, slowly slowly catchy monkey. :lol:
RE fish, I eat salmon without any adverse effects, perhaps try her with a small amount and see how she gets on?
You are most welcome to PM me if you'd like, I will try and help if I can, like you say, sometimes just talking to someone with the same thing helps.
Take care.x
Lisa
 
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Re: Ok.....here it goes....

Postby Lisa » Tue Jul 17, 2012 12:15 pm

Btw, what is your name, and where are you? England?
Lisa
 
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Re: Ok.....here it goes....

Postby bigvern » Wed Jul 18, 2012 8:19 am

+1 re weak comments;
No one should be advising anyone to eat or not eat certain food/food groups - especially in such unequivocal terms.
NO ONE should change their diet without pofessional advice.
bigvern
 
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Re: Ok.....here it goes....

Postby amber » Wed Jul 18, 2012 1:08 pm

just wanted to say that maybe the only thing you should do at this stage is try and cut out those two foods - tuna and beans was it - if you are sure that they are triggers. maybe think of a reasonable point for your child to avoid like it being a possible allergy so its best to avoid. can the school just not allow those foods maybe? difficult i know. even more difficult dont obsessively worry about your children living with this - almost a stupid thing to say i know. your daughters sounds perfect and it is early days for her and she may not mount to any severe problems at all. worrying and nerves can be such a viscious trigger. obv she sounds very happy so try not to let the possibility drag you down try and stop worrying when it sounds like you dont need to do that for her or for you. get the test done in the mean time - print all the info out as posted so you dont have to say too much to the doctor. good luck and i want to say chill but that word is my arch nemesis!!
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Re: Ok.....here it goes....

Postby Weak » Fri Jul 20, 2012 7:02 pm

In response to Lisa, sorry if i came off as aggressive, but i just wanted to relay the importance of the issue. But I would scream at 1000 worried parents If it meant i had a chance to keep a little kid from going through what i went through as i kid.

Back to Still_Suffering. You need to take responsibly, TMAU is not hard to diagnose. If your getting weird bad smells related to food being eaten there are very little possibilities. Either TMAU, or candida. I recommend you look into both.

As far as the diet goes saying kids will be kids really just doesnt cut it. Most people with TMAU smell ALL the time regardless of they eat, most eat to reduce odor not to remove it and it takes months of months of a strict diet in order to fully remove the odor. In your daughters case she can metabolize fmo3 to an extent but not fully. But if she does have too much at any moment her body can stop metabolizing it and then she has got full blown tmau. That is NOT what i want for her, nor is it what you want for her. There is a time for emotions and i time where we have to get the job done.

There are plenty of things she can still eat that are excessive in choline. And a snack everynow and then shouldnt hurt, its just she is so small a pizza to her would be like 3-4 pizzas to an adult. Which is pretty excessive. But I will make this easy for you with these simple steps;

- If you feel the test is wrong get another one taken and do it right this time :P
- If you feel she is eating the wrong things at lunch... pack her lunchs? its not too expensive and as long as you have spare time to make them
- She loves to eat to wrong food? wow she must be the first child in history that likes food that isnt good for her, next you will be telling me something crazy like how she loves candy and likes playing outside...(-__-) all joking aside, get her diet under control, it doesnt have to be super strict since she can metabolize fmo3 to an extent, but atleast keep her from eating foods that are really high in choline like,(dark leafy greens, eggs(eggs yolks, eat whites are completely OK :D) and egg products, soy letchin(everything proccessed will have this in them so try to cook home meals), read meat (beef, pork, etc... chicken is ok though), milk (it isnt TOO bad, but try to limit it), fish(clearly, i think salt or fresh water is ok and the other is really bad,not sure which is which though), and the rest can be looked up on google. Those are the biggies though). Milk can be replaced with rice milk or almond milk and they still taste great alone or with cereal, dark greens are nasty to kids anyways but lettuce is still ok and tasty, removing egg yolks from eggs still taste the same and are just as healthy although giving up egg products may be a hassle.


I dont want to come off as hard or anything I just want to convey the seriousness of the issue. Its all fun and games until your kid comes home with full blown tmau, then youll wish you were a little stricter with her diet. It may be hard at times but your kid needs you, my parents were super strict with me(spankings and everything) and i thank them everyday for it.

One more thing you should look into, there are only 2 ways to get tmau.

Through some sort of incident that caused your body to have trouble metabolizing fmo3 or geneticly. WIth her being so young i doubt she has had any such incident which means she must have gotten it genetically. Which means either you and your husband either have tmau(unlikely) or are carriers, so you should look into that as well... or maybe she is a 1st generation mutation(meaning she just happen to have the mutation by chance), which is rare but possible.
Weak
 
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Re: Ok.....here it goes....

Postby Lisa » Sat Jul 21, 2012 10:27 am

Weak, I think SS knows the importance of this disorder, from reading what she has put, I think she's still trying to get her head round it, we all take things at our own pace, and when SS is ready she will take appropriate steps.
As I've said before, neither you or I are qualified enough to tell anyone what to do, so perhaps, in this instance you keep your comments to yourself, they are neither helpful, or constructive in my opinion.
Every case is different, SS' daughter may not have TMAU, and like I said earlier she shouldn't put her daughter, or herself on the diet without strict medical care.
As someone who hasn't even tried the diet, or anything else please refrain from typing things you frankly know not alot about.
As the old adage goes, "If it aint cute, keep it mute". :D
Lisa
 
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Re: Ok.....here it goes....

Postby robert123 » Sat Jul 21, 2012 7:31 pm

Wow, that's a bit heavy. Personally I think as long as people don't try and pass themselves off as some kind of experts they are entitled to give their opinions, it's up to each of us then to sort the wheat from the chaff so to speak. In one way I do understand where you're coming from Lisa, on one forum I'm on there's this idiot who's always using big words and fancy terms to make himself seem like an expert but in reality is always talking crap. But thankfully there's no one like that on this forum. We're all just trying to help each other out (and none more so then you Lisa, respect).
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Re: Ok.....here it goes....

Postby Weak » Mon Aug 13, 2012 3:57 am

Lisa wrote:Weak, I think SS knows the importance of this disorder, from reading what she has put, I think she's still trying to get her head round it, we all take things at our own pace, and when SS is ready she will take appropriate steps.
As I've said before, neither you or I are qualified enough to tell anyone what to do, so perhaps, in this instance you keep your comments to yourself, they are neither helpful, or constructive in my opinion.
Every case is different, SS' daughter may not have TMAU, and like I said earlier she shouldn't put her daughter, or herself on the diet without strict medical care.
As someone who hasn't even tried the diet, or anything else please refrain from typing things you frankly know not alot about.
As the old adage goes, "If it aint cute, keep it mute". :D


She asked a question and I gave an answer that I felt answered her question. If she is displeased with my answer then allow her to voice her concern. I respect the fact that you feel to speak up for her, but at the same time I am entitled to give my opinion. I never claimed to be an expert(its actually funny that my signature states that everything i say is based purely on prior knowledge. So why anyone would think I am some sort of expert is completely beyond me), I highly doubt anyone on here is and I think everyone of us knows it. We are just a community trying to help one another, I feel like I am helping by recommending a diet and telling her to get her daughter retested and doing it right this time by giving her a high choline diet prior to being tested. If you disagree with my approach then thats just semantics.

I like how you dont really disagree with with anything I said but tell me how completely wrong i am. Most people who see something wrong tend to point it out, rather than saying, your wrong and your not an expert. I mean seriously, if me and you are not qualified to give her advice then who exactly is going to give her advice? What exactly are we going to tell her.... Go see an expert about it there is nothing we can say because we are not qualified? I told her to get her daughter retested and then gave her recommendations on things to do afterwards. Also you say I know nothing about the TMAU diet. Where did you get that information from. I have been studying this diet for well over 8 years now. I havent been able to go through with it myself for various reasons including living situations and monetary issues. And I dont want to start the diet not knowing whether I will be able to continue it since it takes well over months to see results. I could make frivolous disrespectful comments about you as well but that would be pointless.. besides i know nothing about you, just as you know nothing about me.
Weak
 
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Re: Ok.....here it goes....

Postby bigvern » Sat Aug 25, 2012 6:53 pm

lively debate is a good thing but lets please remember this is a hard condition to fight but we can still be kind to each other whilst expressing our views.

What I would say is that NO ONE is qualified to give diet advice that encourages people to change there diet other than a qualified dietician, see the forum rules etc, re. diet.

As in all walks of life some people are more naturally assertive than others, but this condition requires an extra helping of sensitivity from all I would suggest as it can be soul destroying.

Its a complicated area and people are genuinely trying to help but no one should change there diet on the say so of anyone other that a professional IMHO, thats not to say that we can't exchange knowledge/ideas - lets look after each other as no else will :D :D :D :D
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