Re: Neuro AutonomicDisturbances -

[Guest guest]

Dear ,

Thank you so much for your reply which is really helpful and

inspirational to read how you have been able to identify the areas that

your daughter needs help with and what you are doing.

You asked about MRI, yes had 3 MRI's done but just the head (at 1yr,

2yrs, more recent 17yrs old), the only report from it was the

" generalised lack of cerebral volume " which I imagine is in keeping with

the " abnormal/delayed " myelination in the periventricular area of the

brain. There have not been any localising electrolying lesions and MR

spectroscopy is normal. Not sure why you asked about MRI, I expect

you were asking if anything would have been picked up relating to the

hormone producing glands???

I do want to do the hormone tests now. Question is are there other

ways of testing adrenals other than thru 24hr saliva? It would be so

difficult to collect saliva from my son as he will not spit on demand

(but he does drool at times, probably not when I'd like him to...

lol!).

Think you've mentioned in other post that the tests can be done at

Breakspeare. How does it work with them, can I request for these

tests specifically through Dr G or does he first see the patient and he

decides how to proceed. We've never been to Breakspeare and have no

idea about their costs etc so any tips to go about this and how to keep

costs down would be appreciated.

Thank you so much and wishing more improvements for your daughter.

emily x

> > > > > > > > >

> > > > > > > > > Dr G did an Autonomic test on ds 7yrs old. He

prescribed

> > Ketotifen and

> > > > > > > > will reassess this month (3 months since starting

> > Ketotifen). The result

> > > > > was

> > > > > > > > quite marked and by the effects of the medication it is

> > likely to be

> > > > > viral

> > > > > > > > related. So will return for another autonomic test this

> > month to see if

> > > > > > > > Ketotifin has sabalized the disturbance if not try viral

> > route.

> > > > > > > > > I took Dr G letter to Neurologist who also did ECG

which

> > result shows

> > > > > > > > Neuro Autonomic Disturbances and wants ds to have bloods

and

> > urine tests

> > > > > this

> > > > > > > > week.

> > > > > > > > >

> > > > > > > > > Does anyone here have a child with Neuro Autonomic

> > Disturbances and

> > > > > what

> > > > > > > > diagnosis, symptoms and most important treatment and

> > prognosis their is?

> > > > > > > > >

> > > > > > > > > Thank you in advance.

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

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