Pattie

[Guest guest]

Martha-- I really like your analogy! ~giggle~ Now that I think of it that

way-- 2 out of 3 ain't bad...and the 3rd one thinks the other docs are on the

right track, she's just not 100% sure it will help. AND what you a re saying

makes COMPLETE sense. THANK you so much for your reply! What would I do with

out you guys?

Our ped, hem and immuno don;t want to even try low-dose antibiotics daily-- they

are really more worried about antibiotic resistance than anything else.

I will be praying for you guys, too. We're all in the same boat, huh?

~Pattie~

" I thank God for my handicaps, for through them, I have found myself, my work

and my God. " ~Helen Keller

[Guest guest]

at what number would she be a candidate?

Pattie

Wow. Our immuno would never even consider that. I don't know if she's gotten

slapped around by insurance companies in the past or what, but unless you

have some pretty horrible numbers, she won't recommend IVIG unless you've had

two or more life-threatening infections like meningitis or encephalitis or

osteomylitis (pneumonia does not count). 's had pneumococcal meningitis

and her pneumococcal antibodies are lower than ever, but she's not a

candidate according to the immuno because her IgG is up to the 500s now.

Shrug.

(mom to Kate, born 9/19/02; and , age 3-3/4 -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs)

[Guest guest]

In a message dated 1/2/2003 3:20:42 PM Central Standard Time,

paxchristi@... writes:

> at what number would she be a candidate?

>

> Pattie

>

She's never said specifically. She didn't even push it right away back when

's numbers were in the 200s and she had multiple other deficits (see

signature line). She let us wait it out a little (and keep her basically

isolated) to see if she'd improve and to let us research and be comfortable

with the decision to start IVIG. Right before her 2nd birthday we had finally

decided (after much agonizing) we DID want treatment. But first we had her

re-run all numbers again and surprise of all surprises, 's

" non-transient " deficiency had improved greatly and she was no longer a

" candidate " according to this immuno, even though she was sick ALL the time.

It was like, " Sorry kid, it's nothing deadly so you're out of luck! " I was

disappointed to say the least, after agonized over the decision like that. In

hindsight, she hasn't had anything deadly, but I wonder how many gallons of

abx she might have been spared or if she could have avoided some of the

billions of infections. Maybe not, maybe many were IgA related and IVIG

doesn't help with that. But I don't waste too much time or emotion wondering

what might have been, I just thank God that she's improved as much as she

has. I think it's pretty miraculous considering they all thought hers was not

a transient disorder.

(mom to Kate, born 9/19/02; and , age 3-3/4 -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs)

[Guest guest]

Hi Pattie,

Well the Infectious Disease Specialist is leaning towards IVIG, Our

immunologist is leaning towards prophylactic antibiotcs so we have a 50-50

tie I guess. So I guess I call the coumadin clinic to see whether they have

anything to say about how the INR's fare when you give either. The

Cardiologist will probably want to have a word also.... On a good note the

Infectious Disease Specialist says that a good number of IgA deficient kids

do show a definite improvement with IgG. Even though our pneumo numbers went

up he attributes that to the Prevnar and mentioned that there are a lot more

than 7 types of pneumoccal strep in the upper respiratory tract so that is

the reason why we haven't seen a definite improvement in prevention of sinus

infection from the increased pneumo numbers.

--Martha

[Guest guest]

Martha,

Have they ever given Chrissy an adult Pneumovax? says that it's

important to give kids BOTH the adult and Prevnar--to cover more strains.

Sandi

[Guest guest]

Martha,

Have they ever given Chrissy an adult Pneumovax? says that it's

important to give kids BOTH the adult and Prevnar--to cover more strains.

Sandi

[Guest guest]

Sandi-

The adult pneumovax didn't do anything to her titers--evidently she

didn't start producing antibodies because her body probably didn't recognize

the bacteria .

--Martha

[Guest guest]

Sandi-

The adult pneumovax didn't do anything to her titers--evidently she

didn't start producing antibodies because her body probably didn't recognize

the bacteria .

--Martha

[Guest guest]

Hi - you mentioned that Katy had chronic inflammation of her bowels, do you

know if it was ever given another name? I have a PID, my son does, and now my

mother is basically on the same diet as Katy used to be and has been diagnosed

with an autoimmune disorder called collagenous collitis as well as arthritis

in her hands (her dx may actually be lupus, it is still in question). Anyhow,

the doc's have not been able to help her gut at all and she sounds like she has

the same problem as Katy so I'm curious about Katy's old difficulties.

Anne R. (Sam's mom)

[Guest guest]

Just sent you a bunch of articles--- I also looked at Blake's website!

Great job!

Peace Be With You,

Pattie

Don't let your past dictate who you are now, but let it be a part of who you

will become.

_____

_____

[Guest guest]

OH-I think everyone can understand. I am the queen of typos! Let me tell

you! Ha ha ha Thanks for the info.. Let me know if you'd like any of the

articles.

~Pattie Curran~

Piedmont Triad, NC

Elbridge Gerry--signer of the Declaration of Independence, Govenor of

Massachusetts and Vice President of the United States under

Madison....

Ever wonder where the term gerrymandering comes from? While serving as

governor of Massachusetts from 1810 to 1812, Elbridge Gerry helped enact a

law dividing the Bay State into political districts favorable to his own

party. This resulted in some odd shaped districts. One district looked like

a salamander, someone said. Someone else joked that it looked more like a

" gerrymander, " making a play on the governor's name. To this day, the

practice of drawing boundary lines to favor a political party or group is

called gerrymandering.

_____

Pattie, my post disappeared before I was ready to send it and it has

not shown up yet on the group messages so where its gone to I wonder!

I'm hoping I hit the delete button by accident because if its still

floating in cyber space to make an appearence here before I had a

chance to proof read I will most certainly be cringing! I am typing

on the floor with the keyboard wobbling on my lap, and while I am a

rotten typist at the best of times I am an even worse one in this

position.

Suffice to say I wrote the Creon has not seemed to make s

constipation worse. was born with the stooling issues, it

is part of his FG Syndrome. I expect it is possible the Creon has

some effect on his stools but not so that i have ever correlated a

connection.

The other thing I wrote about was that has not started IVIG

yet. That had my fingers flying because it is such a sore point for

us.

And thankyou for your invitaion to join the SDS group.

Bright wishes,

, mum to and

_____

[Guest guest]

LOL-true-he isn't coughing as much today. So that is a good sign!

~Pattie~

" What matters is not great deeds, but great love. " ~ St. Therese of Lisieux

Family website: www.shwachman.50megs.com

_____

From: [mailto: ] On Behalf Of

sassykay59@...

Sent: Friday, April 28, 2006 8:06 PM

Subject: Pattie

In a message dated 4/28/2006 6:09:23 AM Pacific Daylight Time,

catholicmomof3@... writes:

Right now we are trying a new medication for J to see if

we can avoid sinus infections. I'm dreaming, I know..

Hey, you never know!

Sandi, Mom to --age 13--CVID

_____

[Guest guest]

They are flying our of Raleigh tomorrow morning. They live in MO.. They are

then going for another opinion at Denver Children's. They have been to

several BMT centers and have been told their children will need

transplant... they so far like Duke the best.

They were here a few times last month for work-ups and then came back for

follow up last Wed and leave tomorrow. They will be back again on the 22nd.

I will pass the article along.

~Pattie~

" What matters is not great deeds, but great love. " ~ St. Therese of Lisieux

Family website: www.shwachman.50megs.com

_____

From: [mailto: ] On Behalf Of

Sent: Tuesday, May 02, 2006 12:04 PM

Subject: Pattie

Hi, Pattie~

Sure, I don't mind AT ALL if you forward the article....anything to

help another possible PBMT family. You could also tell her that we're

headed to Duke tonight, so if she wants to meet this week, I'd be glad

to arrange something. Will she be there for the Rainbow of Heroes Walk

on Sat? That would be a great way to meet us and other Duke PBMT

families. Otherwise, she could e-mail me, and we'll figure something

out. We'll be taking our laptop w/ us, so I'll have access.

BTW, I've visited your family webpage before and was very impressed! I

need to update our foundation page, but have been busy w/ our

caringbridge page. Our dream is to help other XHIM/HIM families

through our Tatem XHIM Foundation, and I see you've been very

proactive in helping others w/ SDS...would you mind giving me pointers

on how to go about helping other XHIM/HIM familes? I've thought about

webpages, support groups and financial help/fundraisers, but am not

sure where to start.

~ Tatem, VA

Mom of:

Kaitlyn,13 (healthy donor for brothers' double BMT)

,10 (XHIM, 1 yr. post BMT @ Duke)

, 6 (XHIM, 1 yr. post BMT @ Duke)

www.caringbridge.org/va/tatem

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to:

/messages

[Guest guest]

Oh, okay...sounds like we'll just miss them...if I can help them in

any other way, I'm willing. I remember getting to talk to 2 other Duke

PBMT Moms on the phone when we were trying to decide about transplant,

and it helped so much. You can pass on my email address and/or

caringbridge webpage also.

Wishing the best for them,

~ Tatem, VA

Mom of:

Kaitlyn,13 (healthy donor for brothers' double BMT)

,10 (XHIM, 1 yr. post BMT @ Duke)

, 6 (XHIM, 1 yr. post BMT @ Duke)

www.caringbridge.org/va/tatem

[Guest guest]

Will do! She just called me and they are just finishing up-getting blood

drawn. They will be back on June 1st-likely to stay for transplant. I will

give her your info. She sounded like she wanted to talk to you when I

mentioned the article..

~Pattie~

" What matters is not great deeds, but great love. " ~ St. Therese of Lisieux

Family website: www.shwachman.50megs.com

_____

From: [mailto: ] On Behalf Of

Sent: Tuesday, May 02, 2006 12:37 PM

Subject: Re: Pattie

Oh, okay...sounds like we'll just miss them...if I can help them in

any other way, I'm willing. I remember getting to talk to 2 other Duke

PBMT Moms on the phone when we were trying to decide about transplant,

and it helped so much. You can pass on my email address and/or

caringbridge webpage also.

Wishing the best for them,

~ Tatem, VA

Mom of:

Kaitlyn,13 (healthy donor for brothers' double BMT)

,10 (XHIM, 1 yr. post BMT @ Duke)

, 6 (XHIM, 1 yr. post BMT @ Duke)

www.caringbridge.org/va/tatem

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to:

/messages

[Guest guest]

We have UHC--- we have a choice between BC/BS and UHC.when hubby got the job

last year, we picked United b/c the hospital where the kids go stopped

taking BC.BS (they have since started) ANYWAY_- with either plan we would

have to use the same pharmacy benefit administrator- they farm it out to

another company for that. Of course then the " other " company blames UHC for

the change and says they can't do a thing. GRRRRRR

I'm working on making calls this morning.. We're on the East Coast, so I

can't call the folks I need to call in other areas of the country! LOL...

~Pattie~

" What matters is not great deeds, but great love. " ~ St. Therese of Lisieux

Family website: www.shwachman.50megs.com

_____

From: [mailto: ] On Behalf Of

sherrill c moseley, jr

Sent: Tuesday, June 06, 2006 6:02 AM

Subject: Pattie

Hi All. Pattie, Which insurance do you have? I am curious, because we use

NuFactor and have BC/BS. I don't want to fight to have to keep using

NuFactor. It makes me so mad when we are told who we can use or see as far

as physicians and drug companies go. What do we pay our premiums for??? You

may want to contact the IDF and see what they say or which direction if any

they can send you to " fight " the change. Couldn't hurt.

Thanx,

Xan, Mom to a Graduated Senior heading to the CITADEL & Kaitlyn, 12

1/2 headed to the 7th grade, CVID, Asthma, Chronic Sinusitis, & Reflux

[Guest guest]

Pattie -

I am so sorry you are going through this and, yes, it sounds like a conflict

of interest to me. Given the constraints, and your kiddos dependence on IgG, it

seems that your best course of action might be to find a trustworthy contact at

Accredo. Brace for the worst and hope for the best.

mom to CVIDer

[Guest guest]

Pattie -

I am so sorry you are going through this and, yes, it sounds like a conflict

of interest to me. Given the constraints, and your kiddos dependence on IgG, it

seems that your best course of action might be to find a trustworthy contact at

Accredo. Brace for the worst and hope for the best.

mom to CVIDer

[Guest guest]

,

THANK YOU THANK YOU THANK YOU!

~Pattie~

" What matters is not great deeds, but great love. " ~ St. Therese of Lisieux

Family website: www.shwachman.50megs.com

[Guest guest]

I'm sure she won't mind.. she is not lie that. I just hate being right

because until now she's been *perfect*

Peace Be With You,

~Pattie~

" What matters is not great deeds, but great love. " ~ St. Therese of Lisieux

Family website: www.shwachman.50megs.com

I would have done the same thing with our doc if it had been Kaitlyn. That

is why we are our childrens advocate and why we keep such good records, so

we can make sure of the whats, whens and whys of our childrens care. I don't

think you were wrong in mentioning it, the chart should show everything,

even in call ins. And if you have had a long history with this doc, she/he

should not mind you bringing this to his/her attention.

Keep doing what your " MOMMY " mind & heart tell you, most times it is right

on the money.

Hugs to you and hope they are all feeling better.

Xan, Mom to & Kaitlyn 13 1/2, CVID, Asthma, mild Reflux even after

the Nissen surgery, and CHRONIC Sinusitis

[Guest guest]

Pattie,

You were actually nice about it. I keep a running record for my daughter

and take it to the doctors office with me. That had happened to me before

and I made her call the pharmacy while I was there. I had the medication,

dose and the doctor who prescribed it as well as the pharmacy phone number

all charted out. We must be advocates for our children no matter how big or

small the issue is. Keep p up the good work

Lorri ( CID 17 years old)

From: [mailto: ] On Behalf Of

sherrill c moseley, jr

Sent: Thursday, June 28, 2007 4:42 AM

Subject: Pattie

I would have done the same thing with our doc if it had been Kaitlyn. That

is why we are our childrens advocate and why we keep such good records, so

we can make sure of the whats, whens and whys of our childrens care. I don't

think you were wrong in mentioning it, the chart should show everything,

even in call ins. And if you have had a long history with this doc, she/he

should not mind you bringing this to his/her attention.

Keep doing what your " MOMMY " mind & heart tell you, most times it is right

on the money.

Hugs to you and hope they are all feeling better.

Xan, Mom to & Kaitlyn 13 1/2, CVID, Asthma, mild Reflux even after

the Nissen surgery, and CHRONIC Sinusitis

[Guest guest]

Pattie,

how is ph's cellulitis? Did it clear up? Been wondering...

(, cvid)

[Guest guest]

He is doing better. It is still red and has a lump underneath. If it is

still sore tomorrow, we are going to the doctor. He is still on

Clindamycin. He's never had cellulitis like this before! It usually clears

up and the pain is gone in the first 24-48 hrs..thanks for asking!

Peace be with you,

Pattie

" If at any time the going gets harder in our interior struggle, that will be

a good moment to show that our love is in earnest. " ~St. maria Escriva

[Guest guest]

Hi Ursula,

Here is a link to the story. It is a Consumer Watchdog Alert...

http://www.consumerwatchdog.org <http://www.consumerwatchdog.org/> They

have several alerts.. Here is a link to the alert I was referring to:

Consumer <http://www.consumerwatchdog.org/patients/articles/?storyId=24489>

Watchdog Calls on Google to Cease Lobbying Effort to Allow Sale of Patient

Medical Records; Urges Congress to Adopt Privacy Protections in Economic

Stimulus Bill

Here is the text from the original story I was talking about:

Breaking news - January 27, 2009

Consumer Watchdog Calls on Google to Cease Lobbying Effort to Allow Sale of

Patient Medical Records; Urges Congress to Adopt Privacy Protections in

Economic Stimulus Bill

CONTACT: Jerry Flanagan, (310) 889-4912

Santa , CA -- The non-partisan Consumer Watchdog called on Google

today to cease a rumored lobbying effort aimed at allowing the sale of

electronic medical records in the current version of the Economic Stimulus

legislation. Consumer Watchdog called on Congress to remove loopholes in

the ban on the sale of medical records and include other privacy protections

absent from the current bill such as giving patients the right to an audit

detailing who had accessed their medical records and how the records were

used.

Reportedly Google is pushing for the provisions so it may sell patient

medical information to its advertising clients on the new " Google Health "

database: https://www.google.com/health/

Download

<http://www.ConsumerWatchdog.org/resources/PrivacyLetterCongress.pdf>

Consumer Watchdog's letter urging Congress to refuse Google's amendments and

detailing five areas of needed patient privacy improvements.

In the letter sent today, Consumer Watchdog wrote:

" Americans will benefit from an integrated system capable of making our

medical records available wherever we may need them, but only if the system

is properly used.

" The medical technology portion of the economic stimulus bill does not

sufficiently protect patient privacy, and recent amendments have made this

situation worse. Medical privacy must be strengthened before the measure's

final passage, rather than allowing corporate interests to take advantage of

the larger bill's urgency. . . .

" First and foremost, electronic medical records should be designed to

benefit patients, not the corporate interests lobbying hard on Capitol Hill

to get a piece of the $20 billion in taxpayer subsidies provided for this

project. "

The 5 patient privacy protections that Consumer Watchdog urged Congress to

adopt in the electronic medical record section of the Economic Stimulus

bill, include:

1. Retain & Strengthen Prohibition on Sale of Private Medical Data. Our

private medical information, including which prescription drugs we take and

which illnesses we have, is extremely valuable to the medical-insurance

complex. Some want to market to us, others want to use this information to

deny us access to insurance coverage. For instance:

.. Google is said to be lobbying hard this week to weaken the ban currently

in the draft measure on the sale of our private medical records. Google must

not be allowed to destroy this basic privacy protection.

.. On Friday, Representative Roy Blunt (R-MO) added an amendment to the House

version of the stimulus bill allowing pharmacists to sell our private

medical information without our knowledge. This amendment must be removed.

.. Currently, the stimulus bill makes an exception to the ban on the sale of

private medical information for purposes of " research. " This loophole is

large enough to allow drug companies, marketers and health insurers to buy

our private health information for purposes of " researching " consumer

advertising for the newest health products, or to decide which of us to

insure.

.. Another broad exception would allow companies to sell or exchange a

patient's records if the sale or exchange is " to a business associate for

activities . . . that the business associate undertakes on behalf of and at

the specific request of " the company holding the private information.

These blatant attempts to weaken privacy protections all must be turned

back.

2. Provide an " Audit Trail " To Track Who Accesses Our Records. Under the

current version of the bill, a patient is not able to track which medical

personnel access their medical records or how that information is used. The

measure must be amended to allow patients to request an " audit trail "

detailing when their medical record was accessed, by whom, and for what

purpose.

3. Make Database Holders Accountable for Keeping Our Medical Records

Private. Companies developing electronic medical record technology must be

fully accountable for the safe keeping of our information. " Safe harbor "

provisions in the current legislation that would insulate these interests

from accountability must be removed. For example, the current version of the

bill shields database holders from telling patients when possible identity

thieves access their private information as long as the data disclosure was

" unintentional " and the company acted in " good faith. "

4. Allow States To Adopt More Protective Standards. Currently the bill

allows states to establish additional privacy regulation and enforce

existing requirements. These provisions must remain part of the final

proposal. Other federal health care laws, like HIPPA, Medicaid, and COBRA,

provide a model for a federal-state partnership rather than federal

pre-emption of more protective state standards. States have traditionally

been the laboratories of innovation in patient privacy. In fact, the gold

standard for medical privacy is the California Confidentiality of Medical

Information Act, which bars the sharing, selling, or using for marketing or

otherwise, any private medical information.

5. Retain House Amendments Protecting Private Information. Last week,

Congressman Markey (D-MA) added amendments to the House bill

requiring the holders of health information databases to make protected

health information " unusable, unreadable, or indecipherable " to unauthorized

individuals. This amendment will help to ensure that databases are

appropriately protected to keep sensitive medical information out of the

hands of identity thieves and black market information aggregators.

Peace be with you,

Pattie

Without life, liberty and the pursuit of happiness are not possible.

Family Website: www.shwachman.50megs.com

Homeschool Blog: www.catholicmomof3.blogspot.com

Pattie - I have signed up for the service with Google health. What it allows

me to do is contract with a service that will take our paper records and

convert and upload them for a fee to the Health website. Walgreens is

participating so they link our Health account to our Walgreens records and

all the meds are there. Plus it keeps them synced. With Macey having

treatment in 3 different towns with three seperate sets of doctors I think

this is going to be a wonderful service for us to bandaid many record

problems until the country is online with a national service.

Where did you see that Google was trying to buy medical records?

The service we purchased makes it where we provide the notes to one of 4

companies and they submit the finished product to Google. ALso our doctor

has signed off on Quest labs submitting results once the doctor has entered

a PIN number and we can have them. It also allows the doctor to pick and

choose the results that are sent. This PDF is what we gave our doctors

office to get it set up.

<http://www.questdiagnostics.com/patient/files/care360_letter.pdf>

http://www.questdiagnostics.com/patient/files/care360_letter.pdf

Medco is also participating and they have all of Macey's records for her

subq treatments. So that's also making it a complete medical record.

Cleveland Clinic is linked with Google under their " My Chart " program. Plus

BCBS of MA.

But all of these are user generated and controlled with PIN numbers and

account passwords set up by me.

Ursula Holleman

mom to (16) and Macey (13)

www.caringbridge.org/visit/maceyholleman

[Guest guest]

Hey-just sent another link. Hope it helps. Also IHF is fighting this

provision, as well.

I am not an expert.. I just try to keep informed on the issues...and may

have misunderstood things, too-Lord knows the bill is lengthy and full of

legal gibberish that made it difficult to wade through and figure out the

true meaning!

Peace be with you,

Pattie

Without life, liberty and the pursuit of happiness are not possible.

Family Website: www.shwachman.50megs.com

Homeschool Blog: www.catholicmomof3.blogspot.com