Dobar savjet ...? spect scans

[Guest guest]

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> Hi -

> 1)  A couple thousand scans have been done in the last ?10+ years on the same

> machine and studied, and there is a published paper from Dr Goldberg and Dr

> Mena - you can access it on (can't remember which) either

> www.neuroimmunedr.com or www..net.  Biggest findings are hypoperfusion

> (reduced blood flow) in the frontal and temporal lobes.  Often hyperfusion

> (too much blood flow) in other areas when symptoms of OCD and anxiety and ADD

> are present.  There are also scans showing the improvements in the brain

> coinciding w/treatment and the child's functioning, but I don't know if that's

> published in the paper.  Also, the scans show that Chronic Fatigue Syndrome

> and Autism look alike, only the age of onset is different.  That is why the

> CFS protocol (researched over 25 years and many things already tried) is so

> effective in .

>

> 2:  You can have all the lab work done.  However, you will frequently not find

> any outright abnormalities, or the patterns and elevations (or low results)

> here or there don't mean much in the mainstream diagnostics, but there are

> common patterns and findings that will point to the dysfunction.  There are so

> many that I can't list them all, but you can post lab results and discuss

> them.  Often things will look outright normal.  My oldest son's pretty much

> were normal.  His viral titers didn't even go up until a year+ on antivirals, 

> but it did not mean he didn't have the virus.  In fact, it is the absence of

> any 'universal' findings that have made CFIDS research so difficult for the

> last 25 years.  The knowledge and technology have not even been in place.

>

> 3: Most people don't get the scans anymore until after they have been on meds

> maybe a year (usually a lot longer) and have concerns that aren't getting

> addressed.  Many don't have scans for two years - most don't have them at

> all.  Some people do go to the spect clinics and THEN get referred to Dr

> Goldberg, but I would say that a scan in the beginning is wasted money and

> pretty much going to have absolutely no impact on the initial year plus of

> treatment.  The only value I can think of is to have a convincing image for

> yourself (but none are the same and it doesn't " prove to the world " that a

> child has - just proves the findings we already know about are present),

> and the other 'plus' would be having another one in a couple of years and

> seeing the progress.  Now THAT would be cool.  But is it worth the stress when

> a child isn't yet functioning well and doesn't understand yet?  (They probably

> do a lot better in a year or two.)  Is it worth

> sedation?  It really has almost no value in the beginning.  The reason Dr

> Goldberg shows them in his presentations is it is the most significant tool

> for research and showing the progress that treatment does.  It is helpful

> later in treatment if a child is having complex reactions to SSRIs and other

> meds or just is not brightening up the way it was expected.

>

> Unless you just have loads of extra cash, I would save your money and not do

> the spect ($2000+), and instead save those resources to apply to treatment. 

> Phone consults cost about $185? every 4 weeks at first (then sometimes spread

> to 6 weeks when doing well).  Rxs are usually covered pretty well by BC but

> you could have several copays.  If you could pay for a spect, you may wish to

> take your other child for " a look see " just to be an established patient and a

> short work up to see if he or she is doing as well as you'd like.  A lot of

> siblings have some mild issues that can be helped too, even if only by

> monitoring diet and being aggressive about treating illnesses.

>

> 4)  There are occasionally resources for flights for medical travel.  Some

> have some tight restrictions and most of us wouldn't qualify, and a lot get

> used up quickly.  But it's worth looking into - you can search in the

> group's previous posts for the topic but I can't remember how it's worded. 

> I'm sure someone else could.

>

> HTH-

>

>

> ________________________________

> From: neidhardtashley <neidhardtashley@...

> <mailto:neidhardtashley%40> >

> <mailto:%40>

> Sent: Friday, May 22, 2009 1:34:45 PM

> Subject: Questions

>

> Im am now learning about NIds. I have ?'s

> 1. To all the people who child has had a neuro spec scan, what does it show?

> 2. Do you get all the blood work he suggests 1st and if only they are abnormal

> you go see him then?

> 3. Does the office schdule the scan for you. Can it usually be the same day or

> the following. What places did you have the scans done?

> 4. Im planning for just myself and my son to go b/c of our other child and the

> expense b/c we live in Ohio.

> Thanks you any input

>

>