Passing it on .......

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Passing it on .......

Postby atlantis » Mon Nov 25, 2013 10:26 pm

I am diagnosed with tmau ( diagnosis after first child) I would like another.... dr lachmann wont blood test my daughter as she is symptomless currently . Mine didnt start till early twenties but have heard of other members of the forum whose children developed it later . Am holdin off havin another as I feel its like a game of russian roulette, has anyone had their child blood tested privately as I feel this is my only option - would hate to bring a child up knowin they could have it eventually - might end up doin it anyway .
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Re: Passing it on .......

Postby bigvern » Tue Nov 26, 2013 5:36 pm

We had our daughter blood tested (gene sequence about 2yrs old at time and symptom free) on the NHS via the northen genetic service in newcastle (nr where we live)
we had to have counselling first and convince them the cost of the test was worthwhile for us, the counsellor then goes before a board and pleads the case and if its agreed they do the test, anyways they did the test and she is a carrier with a slight mutation on the other gene (if thats the right word)

we wanted it done so if she does start exhibiting symptoms we can have all the info to hand and she can can have immediate access to treatment (abx), also thought it might come in useful to show the school teachers etc. to head of any pot. bullying.
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Re: Passing it on .......

Postby atlantis » Wed Nov 27, 2013 9:50 am

Thank bigvern for the info can I ask if u are primary or secondary like me, an what age it started for u . Thanku x
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Re: Passing it on .......

Postby bigvern » Wed Nov 27, 2013 7:45 pm

well I was orginally diagnosed in 1995 (one of first in uk) as a carrier (secondary), which appeared to make sense has I had no symptoms until 1993, when I was 24.
However subsequent gene sequencing on my fmo3 gene revealed 2 mutations (one common), so am now classed as primary (TMAU1)

It can get very complicated in differentiating between the 2 (at least in my case, I still dont fully understand it even with the results in front of me and the explanations provided)
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Re: Passing it on .......

Postby atlantis » Thu Nov 28, 2013 8:04 am

Ok I definitely need to push for this testing hopefully my gp will see its as important as I do.thanks again for the information -obv we need to know if our children are carriers they may exhibit symptoms or pass it on to their own children in the future , just don't understand why the dr point blank refused to have her tested, with information like this he could learn more about this condition. Will let u know how I get on . X
atlantis
 
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Re: Passing it on .......

Postby nawaz » Tue Nov 11, 2014 7:00 am

I am diagnosed with tmau ( diagnosis after first child) I would like another.... dr lachmann wont blood test my daughter as she is symptomless currently . Mine didnt start till early twenties but have heard of other members of the forum whose children developed it later . Am holdin off havin another as I feel its like a game of russian roulette, has anyone had their child blood tested privately as I feel this is my only option - would hate to bring a child up knowin they could have it eventually - might end up doin it anyway . ;)
Nawaz
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