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Nevin

Have you received your methylation panel results yet. Ours were due anytime and

I've received an e mail saying they will be delayed for another 6-8 weeks.

Needless to say I'm not too pleased.

BW

Alison R

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Hello Alison,

I have got the same story, 8 weeks more delay because of the lab's fault!I am

not pleased either especially I need that result desperately now!

I thought everything is going wrong nowadays but you are experiencing the same

difficulties so no need to take the wrong thinking path...!

By the way, a short summary about my boy.He has been referred to the Great

Ormond StHospital for a specialized genetic testing to rule out certain

conditions and also he will be seen a neurologist.

DrKees found siginificant renal failure.Today NHS they repeated the test again,

so anxiously I am waiting what will be their test result.His O2 level 100

according to the NHS machine, very normal.So, how does he fit for the frame for

starving for O2 even though he is constantly hyperventilating? I don't

understand...

nevin

>

> Nevin

>

> Have you received your methylation panel results yet. Ours were due anytime

and I've received an e mail saying they will be delayed for another 6-8 weeks.

Needless to say I'm not too pleased.

>

> BW

>

> Alison R

>

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Nevin,

For us, the hyperventilating is an effort to clear ammonia - just a built in

reponse of the body. Ammonia shows up on our OAT periodically as a orotic acid

elevation. Sounds like you have some heavy duty things going on. My prayers are

with you,

> >

> > Nevin

> >

> > Have you received your methylation panel results yet. Ours were due anytime

and I've received an e mail saying they will be delayed for another 6-8 weeks.

Needless to say I'm not too pleased.

> >

> > BW

> >

> > Alison R

> >

>

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