Re: when is it too late?

[Guest guest]

If your pedi gives you any trouble getting a script, or if you want to find out

about helmet providers, another possibility is to try seeing a neurosurgeon that

belongs to a CFT (craniofacial team). They deal with craniofacial deformities

including plagio and should know of any helmet providers in their area. You

could call their office and ask. Also, the neurosurgeon might be willing to

write a script, though neurosurgeons' opinions on treatment of plagio seem to

vary widely from doctor to doctor, so be careful if you go this route.

Unfortunately, the website that has the listing of Craniofacial Teams does not

have one listed for Oregon. They do have neurosurgeons listed on a CPT (Cleft

Palate Team). You could call the office and ask if they can help you even though

they aren't listed as a CFT. They are still neurosurgeons. You could also

consider seeing someone in a neighboring state depending on where you are in

Oregon and if it's a reasonable drive.

Here's the listing for the CFT in Oregon:

Kaiser Permanente N.W. – Cleft Palate Team – CPT

Kaiser Hospital, Sunnybrook

9900 SE Sunnyside Rd

Clackamas, OR 97015

Team Phone: 503.571.3995

Team Alt. Phone: 503.571.2533

Team Email: Dana.S.@...

Patient Age Range: 0-18

Team Leader(s): Dana S. , MD (Otolaryngology); Dana S. , MD

(Coordinator/Administrator)

Other Contact(s): Micheau

Here's the link where I got this info, and where you can look for neurosurgeons

in neighboring states if you wish:

http://www.cleftline.org/team_listings/states_o

Here's the website of the Oregon hospital:

https://members.kaiserpermanente.org/kpweb/medicalstaffdir/specialtyfacilitysear\

ch.do

Hope that helps!

> > Â

> > >My ped has always told me my kid's head was fine. I saw some pics from a

> >website and never though to compare her ears for whatever reason and they are

> >very much not aligned. Her head is flat on her left side and her left ear is

> >lower and pushed to the front. Her one eye IS a little bit smaller. She 14

> >months old (will be 15 on the 20th. I called hanger and I need a script. I

> >called ped and he's busy but the lady said she would ask him for an earlier

> >appt. I really demand a helmut. I won't be pushed around and be told to

ignore

> >our problems because we're poor or ppl don't care whatever. I will charge it.

I

> >don't care. I am determined to help her no matter what. But is it in vain? At

> >this stage will nothing help her?

> > >thx Kim

> > >

> > >

> >

>

[Guest guest]

Now that I know where you are, there's also what looks like an amazing

craniofacial clinic in Seattle. It looks like it's about 4 hours for you, but if

you need a neurosurgeon, this looks like one of the best places in the US if

their website is accurate. Even if you don't go there, I suggest calling them

about helmet locations. They should hopefully be able to help you find somewhere

in southern Washington.

http://www.seattlechildrens.org/clinics-programs/craniofacial/

> > > Â

> > > >My ped has always told me my kid's head was fine. I saw some pics from a

> > >website and never though to compare her ears for whatever reason and they

are

> > >very much not aligned. Her head is flat on her left side and her left ear

is

> > >lower and pushed to the front. Her one eye IS a little bit smaller. She 14

> > >months old (will be 15 on the 20th. I called hanger and I need a script. I

> > >called ped and he's busy but the lady said she would ask him for an earlier

> > >appt. I really demand a helmut. I won't be pushed around and be told to

ignore

> > >our problems because we're poor or ppl don't care whatever. I will charge

it. I

> > >don't care. I am determined to help her no matter what. But is it in vain?

At

> > >this stage will nothing help her?

> > > >thx Kim

> > > >

> > > >

> > >

> >

>

[Guest guest]

I am 74 yrs. old and I have/no had--diagnosed systemic scleroderma with major

organ damage so badly that I was given 5-6 months more to live.  That was in

2005.  Update, 2010, I am in complete remission due to antibiotics and live an

excititing and wonderfully full life full of love, adventure and joy.  It is

never too late as long as one has breath left in them.  But, you can lead a

horse to water and you know you can't make him drink.  So, give her the books,

pamphlets, FAQ sheet and anything else you can google up on the computer  re.

A/, etc.  Explain to her why you feel she could live a better & longer life

with antibiotics and then leave it up to her.  She may have already consigned

herself to have an earlier death.  Some people just don't want to live any more

and that also must be respected. I give you credit for trying, but the ultimate

decision is up to her.  Go  on with your life and there are many more people

on earth who could

use your help and want to hear the success of your story.  Congratulations. 

Dolores 

From: Kathy Dillon <sunbriar@...>

Subject: rheumatic when is it too late?

rheumatic

Date: Monday, December 13, 2010, 9:10 AM

 

When is it too late to start antibiotics? My step mother is 83 and has bad RA,

shes on every medicine known to man (except antibiotics) now her health is

declineing rapidly (I think due to all the meds) she is also very stubborn so im

not sure she would even welcome my advice on antibiotics... I have mentioned to

her that i have RA and am in remission.. she didint take the bait... Ive kept

quiet because i figure shes already got a huge amount of damage and her health

is bad already..but was wondering if anyone has started AP at a late stage and

been succesful . kathy

[Guest guest]

Dolores,

I think you should write your story and remission for the RBF spring e-report.

They would be interested. I know you are also a member of the RBF.

Eva

From: Kathy Dillon <sunbriar@...>

Subject: rheumatic when is it too late?

rheumatic

Date: Monday, December 13, 2010, 9:10 AM

 

When is it too late to start antibiotics? My step mother is 83 and has bad RA,

shes on every medicine known to man (except antibiotics) now her health is

declineing rapidly (I think due to all the meds) she is also very stubborn so im

not sure she would even welcome my advice on antibiotics... I have mentioned to

her that i have RA and am in remission.. she didint take the bait... Ive kept

quiet because i figure shes already got a huge amount of damage and her health

is bad already..but was wondering if anyone has started AP at a late stage and

been succesful . kathy

[Guest guest]

Dolores,

I think it would be grand for you to send your experience to AARP magazine.

Think of how many people it will open doors for a new treatment and cure!

During the depths of CFIDS back in the 90s when I had been to yet another MD who

told me it was in my head, I wrote my journey of Chronic Fatigue Syndrome for an

alumni magazine for a medical university. Through that I hoped to open the

minds of MDs to the realities of Chronic Fatigue.

As soon as I am in remission from RA, you can bet your booties I'll be writing

my experience with Antibiotic Protocol (AP) to expose these MDs to a cure for

rheumatic illnesses. I just had blood work on Monday to test for that hereditary

disease that can cause joint pain (hereditary hemachromatosis HHC) and to

recheck my rheumatoid factor (it has been a year since I first discovered it was

sky high) and anti-ccp. I have been on minocycline for almost 13 weeks. I will

let ya'll know the results. I have noticed that since the weather has turned

frigid, no more Raynaud's symptoms like last winter/spring. Yea! And my hands

and feet are much better. Not perfect, but better.

(Yep, I'm a southern gal...near ville, NC). Amy

[Guest guest]

Thank you, Amy!  You are so sweet and that is a great idea.   l will look it

up and follow through right after the holidays.  Right now, I have a Santa's

workshop set up in the spare bedroom I turned into a walk-in closet.  I am

drowning in paper, bows and tinsel.  Hope to have it all put together as the

kids and grandkids will be here for Christmas dinner and will stay a few days. 

I am looking forward to having a happy holiday with them.  Take care and Happy

Holidays to all.  Dolores

From: Amy <muttville@...>

Subject: rheumatic Re: when is it too late?

rheumatic

Date: Wednesday, December 15, 2010, 8:27 AM

 

Dolores,

I think it would be grand for you to send your experience to AARP magazine.

Think of how many people it will open doors for a new treatment and cure!

During the depths of CFIDS back in the 90s when I had been to yet another MD who

told me it was in my head, I wrote my journey of Chronic Fatigue Syndrome for an

alumni magazine for a medical university. Through that I hoped to open the minds

of MDs to the realities of Chronic Fatigue.

As soon as I am in remission from RA, you can bet your booties I'll be writing

my experience with Antibiotic Protocol (AP) to expose these MDs to a cure for

rheumatic illnesses. I just had blood work on Monday to test for that hereditary

disease that can cause joint pain (hereditary hemachromatosis HHC) and to

recheck my rheumatoid factor (it has been a year since I first discovered it was

sky high) and anti-ccp. I have been on minocycline for almost 13 weeks. I will

let ya'll know the results. I have noticed that since the weather has turned

frigid, no more Raynaud's symptoms like last winter/spring. Yea! And my hands

and feet are much better. Not perfect, but better.

(Yep, I'm a southern gal...near ville, NC). Amy

[Guest guest]

Thank you Eva and Happy Holidays to you & Burl.  I will start writing again

right after the holidays. Up to my eyebrows in tinsel, paper & bows.  Kids and

grandkids are coming and I haven't much time left.  Our new dog is also a

sweetheart that wants our attention.  Yes, I belong to RBF. they gave me my

start.  but sometimes it is so difficult to get into the sight that I don't

write in too often anymore.  But I love them all. And Cheryl Furgerson is a

great choice for president of the company. Happy Holidays to all, Dolores &

Mike

From: Kathy Dillon <sunbriar@...>

Subject: rheumatic when is it too late?

rheumatic

Date: Monday, December 13, 2010, 9:10 AM

 

When is it too late to start antibiotics? My step mother is 83 and has bad RA,

shes on every medicine known to man (except antibiotics) now her health is

declineing rapidly (I think due to all the meds) she is also very stubborn so im

not sure she would even welcome my advice on antibiotics... I have mentioned to

her that i have RA and am in remission.. she didint take the bait... Ive kept

quiet because i figure shes already got a huge amount of damage and her health

is bad already..but was wondering if anyone has started AP at a late stage and

been succesful . kathy