Infant w/ unsolvable medical problem

[Guest guest]

Hello all,

I am posting this email with the hope that someone here or amongst your

colleagues/contacts may be able to help a child with an unexplainable

illness. At the end is a weblink for more detailed information and

pictures/video. This was sent to me from friends of friends of

friends... maybe someone out there can assist in this quest....while

our own experiences with medical mystery were never as severe as Ryan

and his family, we can fully appreciate the frustration and agony his

parents are experiencing. Please read on, thanks, Thom & Rebecca

 

Asking for Help...

 

My nephew Ryan turned 2 on September 11th. He was a bright ray of

sunshine born on such a dark day in our country's history. He is a

special special boy, of this I have no doubt. Some of you know from me

venting my sorrows that he is stricken with severe episodes of muscular

paralysis and seizure-like symptoms just about everyday. These episodes

have severely effected his cognitive, physical and verbal development.

 

I spent Monday with him at Columbia University Hospital in NYCity. This

was the 3rd world renowned neurological specialist that my youngest of 5

sisters, Kasha, and her husband Mike, have brought Ryan to. The little

guy has been tested for so so many things, and each time the result

comes back 'normal'. You would think normal is good, and undoubtedly it

is, but as hard as it is to say, Ryan is not normal physically nor

cognitively. The doctor on Monday was the last active thread our family

had to act on. That thread still involves some very invasive testing

Ryan must go through shortly, but should that test yield the 'normal'

result, we are out of ideas. But my family has never been one to sit

back and accept without a fight.

His father, Mike, who became my first friend in Connecticut when I met

him in a COBOL class in 1989, has put together a website documenting and

depicting Ryan's story. There are things on the website that are very

hard to see, and they break your heart, especially mine, being his aunt

(Ciocia Joyce).. But the rareness of what is going on with Ryan

warrants opening up his life outside of the family.

 

That is why I am writing this email. I'm hoping that if I send this to

everyone I know, and they send it on again, that somewhere, a friend of

a friend of a friend may get this link in their inbox and know of

someone with similar symptoms. Please know that these are desperate

times for me and my family and I never thought I'd be the subject of one

of these 'chain-mail' things. As many of you know I'm also a private

person and I don't like 'imposing' this on my friends. But Ryan is my

Sweet Potato, and I love him like my own...

 

http://route112.net/ryansweb/home.aspx

 

Thank you,

Joyce

[Guest guest]

> http://route112.net/ryansweb/home.aspx

 

 

--- kchamill <kchamill

 

It looks like Spleen Qi deficiency. Almost all the

symptoms belong to Spleen dysfunction. Started at the

end of sumemr / beginning of the cold too. I'd be

interested in knowing what they're feeding the child.

 

Bye,

Hugo

 

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[Guest guest]

Joyce,

 

I'd say try

 

www.dreamhealer.com

 

 

 

ALSO:

 

Adam (dreamhealer) will be attending this conference as a guest speaker Dec

19 to 21, 2003.

 

The Sixth World Congress on Qigong and the 6th American Qigong Association

Conference

 

 

If anyone is attending this conference I'd appreciate feedback from it.

 

Sammy.

 

 

 

 

kchamill [kchamill]

17 October 2003 23:06

Chinese Medicine

Infant w/ unsolvable medical problem

 

 

Hello all,

I am posting this email with the hope that someone here or amongst your

colleagues/contacts may be able to help a child with an unexplainable

illness. At the end is a weblink for more detailed information and

pictures/video. This was sent to me from friends of friends of

friends... maybe someone out there can assist in this quest....while

our own experiences with medical mystery were never as severe as Ryan

and his family, we can fully appreciate the frustration and agony his

parents are experiencing. Please read on, thanks, Thom & Rebecca

 

Asking for Help...

 

My nephew Ryan turned 2 on September 11th. He was a bright ray of

sunshine born on such a dark day in our country's history. He is a

special special boy, of this I have no doubt. Some of you know from me

venting my sorrows that he is stricken with severe episodes of muscular

paralysis and seizure-like symptoms just about everyday. These episodes

have severely effected his cognitive, physical and verbal development.

 

I spent Monday with him at Columbia University Hospital in NYCity. This

was the 3rd world renowned neurological specialist that my youngest of 5

sisters, Kasha, and her husband Mike, have brought Ryan to. The little

guy has been tested for so so many things, and each time the result

comes back 'normal'. You would think normal is good, and undoubtedly it

is, but as hard as it is to say, Ryan is not normal physically nor

cognitively. The doctor on Monday was the last active thread our family

had to act on. That thread still involves some very invasive testing

Ryan must go through shortly, but should that test yield the 'normal'

result, we are out of ideas. But my family has never been one to sit

back and accept without a fight.

His father, Mike, who became my first friend in Connecticut when I met

him in a COBOL class in 1989, has put together a website documenting and

depicting Ryan's story. There are things on the website that are very

hard to see, and they break your heart, especially mine, being his aunt

(Ciocia Joyce).. But the rareness of what is going on with Ryan

warrants opening up his life outside of the family.

 

That is why I am writing this email. I'm hoping that if I send this to

everyone I know, and they send it on again, that somewhere, a friend of

a friend of a friend may get this link in their inbox and know of

someone with similar symptoms. Please know that these are desperate

times for me and my family and I never thought I'd be the subject of one

of these 'chain-mail' things. As many of you know I'm also a private

person and I don't like 'imposing' this on my friends. But Ryan is my

Sweet Potato, and I love him like my own...

 

http://route112.net/ryansweb/home.aspx

 

Thank you,

Joyce

 

 

 

 

[Guest guest]

Dear Joyce,

 

The only sensible thing that seems to have been said to date about Ryan's

condtion was the Chiropractor's surmise that this may have been due to

immunisation: an unexpected onset of a pathogenic factor (Joyce, I'm now going

into TCM-speak) that does not become released properly, ie. lurking pathogenic

factor. Someone has posted the diagnosis of Spleen Qi Xu but that on its own is

not enough to direct a treatment. Without knowing more I would tend to look for

the following scenario in Chinese terms:

Lurking Pathogenic Factor has given rise internally to Phlegm which obstructs

and causes Endogenous Wind. Subsequent treatment with antibiotics at one point

will only have caused more Phlegm by chillling the Spleen. Other treatments are

suppressive and only go to obscure and compound the underlying pathology.

 

Probably (ie. without having seen this child) the basis of his treatment would

be Xiao Chai Hu Tang, perhaps with addition of Tian Nan Xing, Tian Ma and Jiang

Can. this would have the effect of clearing the original pathogenic factor from

the Shao Yang Level, including attendant Heat; transforming Phlegm and removing

obstruction of Phlegm; the additions would subdue Endogenous Wind and remove

Phlegm obstructing the Channels; the basic formula would also tonify Spleen Qi

which, whatever it was before, will now have become injured by prolonged illness

and by the conventional interventions to date.

 

Joyce, the last thing this kid needs is more investigations, particularly

invasive ones. The family needs to freshen its collective mind and let go of

conventional assumptions and " proofs " and get Ryan to a competent doctor of

Chinese Herbal Medicine (ie. not just an acupuncturist) ASAP. I would say under

no circumstances let the Western quacks loose on him with the latest round of

their clueless desperation. Western Medicine can do absolutely nothing for him.

 

It is highly unlikely that would fail him. He is in CT -

should be easy enough to find a reputable Chinese quack there. He needs to see

a Chinese quack more or less nearby him so that the differentiation and

prescription can be made accurate for him.

 

Best of luck!

 

Robert Cran.

 

Robert A D Cran, MA, MRCHM, MEHPA, MBAcC

中醫The Practice 診所

" Oak Cottage "

61 Main Street

Newlands Village

Cape Town 7700

South Africa

 

Phone: +27(21)683 4839

Cell: +27(83)964 9508

FAX: +27(21)682 9028

Email: chinherb

Website: http://www.mycologyresearch.com

 

Please contact writer if you wish to forward any part of this message.

 

 

kchamill [kchamill]

18 October 2003 00:06

Chinese Medicine

Infant w/ unsolvable medical problem

 

 

Hello all,

I am posting this email with the hope that someone here or amongst your

colleagues/contacts may be able to help a child with an unexplainable

illness. At the end is a weblink for more detailed information and

pictures/video. This was sent to me from friends of friends of

friends... maybe someone out there can assist in this quest....while

our own experiences with medical mystery were never as severe as Ryan

and his family, we can fully appreciate the frustration and agony his

parents are experiencing. Please read on, thanks, Thom & Rebecca

 

Asking for Help...

 

My nephew Ryan turned 2 on September 11th. He was a bright ray of

sunshine born on such a dark day in our country's history. He is a

special special boy, of this I have no doubt. Some of you know from me

venting my sorrows that he is stricken with severe episodes of muscular

paralysis and seizure-like symptoms just about everyday. These episodes

have severely effected his cognitive, physical and verbal development.

 

I spent Monday with him at Columbia University Hospital in NYCity. This

was the 3rd world renowned neurological specialist that my youngest of 5

sisters, Kasha, and her husband Mike, have brought Ryan to. The little

guy has been tested for so so many things, and each time the result

comes back 'normal'. You would think normal is good, and undoubtedly it

is, but as hard as it is to say, Ryan is not normal physically nor

cognitively. The doctor on Monday was the last active thread our family

had to act on. That thread still involves some very invasive testing

Ryan must go through shortly, but should that test yield the 'normal'

result, we are out of ideas. But my family has never been one to sit

back and accept without a fight.

His father, Mike, who became my first friend in Connecticut when I met

him in a COBOL class in 1989, has put together a website documenting and

depicting Ryan's story. There are things on the website that are very

hard to see, and they break your heart, especially mine, being his aunt

(Ciocia Joyce).. But the rareness of what is going on with Ryan

warrants opening up his life outside of the family.

 

That is why I am writing this email. I'm hoping that if I send this to

everyone I know, and they send it on again, that somewhere, a friend of

a friend of a friend may get this link in their inbox and know of

someone with similar symptoms. Please know that these are desperate

times for me and my family and I never thought I'd be the subject of one

of these 'chain-mail' things. As many of you know I'm also a private

person and I don't like 'imposing' this on my friends. But Ryan is my

Sweet Potato, and I love him like my own...

 

http://route112.net/ryansweb/home.aspx

 

Thank you,

Joyce