Newly diagnosed

help with getting a diagnosis

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Newly diagnosed

Postby Concerned Mum » Wed Nov 30, 2011 7:14 pm

Hi all. My 11 year old daughter has suffered with 'bad breath' since she was tiny and has today been told she has tested 'very positive' for TMAU. The doctor doesn't seem to know much about the condition or how to control it. Can anyone offer me any general advice? Thank you :|
Concerned Mum
 
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Re: Newly diagnosed

Postby bubbles » Wed Nov 30, 2011 10:30 pm

I have just got my diagnosis and am on the low choline diet but I don't know how suitable that would be for an 11 year old girl. I was also given a course of antibotics and take other supplements again i don't know if these would be recommended for someone so young. The best person to seek advice from is Dr Lachmann who is a leading authority on metabolic conditions including TMAU, if you email him and explain your situation he will get back to you, he is very helpful and very sympathetic, it would be even better if you could try and get a referral to him via NHS. I have diet sheets etc but I think because I am twenty years older than your daughter and as she is still growing you might need to be more careful as the adult protocol may not be totally suitable, I could be wrong but I think its best to be cautious and seek medical help from Dr Lachmann who will offer you great advice. :D

Dr Robin Lachmann's (Metabolic Consultant) email address is on this forum, if you cant get it , send me a message or write up on the forum and I will send it to you.
bubbles
 
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Re: Newly diagnosed

Postby admin » Wed Nov 30, 2011 11:48 pm

Hi Guys,

A warm welcome to you both

I have moved the post to this forum as I thought it more suitable here. :D

Have a look at the faqs on the main website for further info (also putting my 'admin' hat on for a moment please note the forum rules in relation to diets and email addresses etc.)
admin
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Re: Newly diagnosed

Postby Concerned Mum » Thu Dec 01, 2011 7:41 am

Thanks for the message bubbles. I feel so lost and bewildered at the moment and I'm astounded that the doctor simply told me to check out this website as she couldn't help me. I think I will go back to see a different doctor and asked to be referred to someone who does have a clue. Its nice to know you guys are here to help x
Concerned Mum
 
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Re: Newly diagnosed

Postby PoetFire » Thu Dec 01, 2011 10:52 am

Hi. I would say also you might try your local area 'metabolism unit' usually based in one of the bigger hospitals in a county area. Usually they are for adults (?) like Dr Lachmanns unit. I think some of them are becoming aware of TMAU. They would likely be in the nearest big city. Dr Lachmann being the main one in London (Im sure there are other units in London too). Dr Lachmann is probably the most aware in the country though.
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Re: Newly diagnosed

Postby Concerned Mum » Thu Dec 01, 2011 6:53 pm

Thanks - I will have to do some serious groundwork to start getting the help she needs. Its so nice to know that you guys are all in the same boat and are here to help, advise and support xxx
Concerned Mum
 
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Re: Newly diagnosed

Postby bubbles » Thu Dec 01, 2011 8:44 pm

Hey just read forum rules and see we cant give out emails or diet sheets, sorry admin!!!!

To concerned mum, I am sure you will do everything in your power to help your daughter. I don't know if I am 100% right with this but I think Great Ormond Street Hospital may treat children with tMAU but you would have to check this out. Again if you could get chatting to Dr Lachmann this would be a great starting point for you. Let us know of the progress you make. If it helps I had to explain to my doctor what TMAU was when I requested the kit for the urine sample and I had to pay for it, even with a diagnosis I don't know if my GP is entirely convinced but i think the majority of people on this forum have had difficulties with getting their family doctor to believe them hopefully in this future this will improve.
bubbles
 
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