Barbie

[Guest guest]

No we were up in Bellingham, by the other Vancouver. Dr. Elkayam He was

wonderful and his office staff did all of the infusion. He had a couple of

adults try subQ and he said that they did not like it. Both were very obese and

had I think at least one of them other issues. I could not get him to let us get

it SubQ. But it has been a great blessing for us. Lucas is tired if we are late

over a day and it has happened for one reason or another but otherwise he does

fantastic.

BARBIE

Barbie

We moved here form WA state in 2006 and it seems to be the standard

of care to use Sub Q here.

Hi Barbie,

Did you see Dr. (Immuno) in Vancouver when you lived in WA?? Just

curious. He was very resistent to SubQ--it took me two and a half years to talk

him into it. But now even he can see how much better Bri is with a more

consisitent level of Ig in his system.

Sandi, Mom to , age 15--CVID

[Guest guest]

A 504 generally for less serious issues. So for example it is special

accomadations for kids that have health issues that are not effecting there

ability to function in school ACADEMICALLY. My daughter for example had a 504 to

be able to go to the bathroom as she needed not only at breaks. Or that a child

gets a stool to stand on in the bathroom to reach the sink etc. They are minor

things that help accomadate the child that are not necessarily related to their

academic performance. You can look up on the website for you state education and

it will give you the details. 

 BARBIE 

Barbie

>

>

> He has an IEP but they are telling me that it does not matter. I am

very frustrated with the teachers this year and the Special Ed teacher

is useless. I have had 4 meetings with all kinds of promises.

>

> Barbie--

> I would be upset, too. Bri's IEP says that any work he misses due to

absences cannot be counted against him (an idea I received from this

group). This makes it possible for him to miss school and not be

constantly trying to catch up. The school has been awesome about

this--and I do know we are fortunate. Have you tried calling the

Superintendent' s office?? IEP is a Federal law the school must abide by.

> Sandi, mom to , age 15--CVID

>

>

[Guest guest]

I had never heard of that. Thats great. I'm gonna check our state and get some

more information.Thank You

Barbara Jimenez <mother5590@...> wrote: A 504 generally for less

serious issues. So for example it is special accomadations for kids that have

health issues that are not effecting there ability to function in school

ACADEMICALLY. My daughter for example had a 504 to be able to go to the bathroom

as she needed not only at breaks. Or that a child gets a stool to stand on in

the bathroom to reach the sink etc. They are minor things that help accomadate

the child that are not necessarily related to their academic performance. You

can look up on the website for you state education and it will give you the

details.

BARBIE

Barbie

>

>

> He has an IEP but they are telling me that it does not matter. I am

very frustrated with the teachers this year and the Special Ed teacher

is useless. I have had 4 meetings with all kinds of promises.

>

> Barbie--

> I would be upset, too. Bri's IEP says that any work he misses due to

absences cannot be counted against him (an idea I received from this

group). This makes it possible for him to miss school and not be

constantly trying to catch up. The school has been awesome about

this--and I do know we are fortunate. Have you tried calling the

Superintendent' s office?? IEP is a Federal law the school must abide by.

> Sandi, mom to , age 15--CVID

>

>

[Guest guest]

The 504 and the IEP are Federal Laws. I just find each state seems to interpret

a bit differently. some better some worse. But all children in America are

entitled . Mostly it is parents to get if for the kids because unless you get a

great teacher to advocate for your child or if they are causing lots of problems

then no one even lets you know about them. But.... if you ask they required by

law to give you a handbook that tells you everything.

 BARBIE 

Barbie

>

>

> He has an IEP but they are telling me that it does not matter. I am

very frustrated with the teachers this year and the Special Ed teacher

is useless. I have had 4 meetings with all kinds of promises.

>

> Barbie--

> I would be upset, too. Bri's IEP says that any work he misses due to

absences cannot be counted against him (an idea I received from this

group). This makes it possible for him to miss school and not be

constantly trying to catch up. The school has been awesome about

this--and I do know we are fortunate. Have you tried calling the

Superintendent' s office?? IEP is a Federal law the school must abide by.

> Sandi, mom to , age 15--CVID

>

>

[Guest guest]

Thank you so much. I had never known about that, he does his best to stay caught

up, but we've noticed that some subjects that are more graded toward

participation his grades are starting to lower in. I'm gonna look online then go

in and talk to the school in the morning. If would just be a huge help for him,

if he was penalized for the time he's missed... His core grades ( reading,

matter, English) are great, but some of the other things are starting to slip

down.

thank you again

Aymee mom to

(8 IgA def, asthma, food allergies)

Mericaite and Reibekah (12,9...healthy)

Cailey (9, hearnig loss, seizures,

arbara Jimenez <mother5590@...> wrote:

The 504 and the IEP are Federal Laws. I just find each state seems to

interpret a bit differently. some better some worse. But all children in America

are entitled . Mostly it is parents to get if for the kids because unless you

get a great teacher to advocate for your child or if they are causing lots of

problems then no one even lets you know about them. But.... if you ask they

required by law to give you a handbook that tells you everything.

BARBIE

Barbie

>

>

> He has an IEP but they are telling me that it does not matter. I am

very frustrated with the teachers this year and the Special Ed teacher

is useless. I have had 4 meetings with all kinds of promises.

>

> Barbie--

> I would be upset, too. Bri's IEP says that any work he misses due to

absences cannot be counted against him (an idea I received from this

group). This makes it possible for him to miss school and not be

constantly trying to catch up. The school has been awesome about

this--and I do know we are fortunate. Have you tried calling the

Superintendent' s office?? IEP is a Federal law the school must abide by.

> Sandi, mom to , age 15--CVID

>

>

[Guest guest]

---

Have you gotten a 504 plan in place for him? if not, you really

should. It will protect him, and you, from the whole truancy problem

and help make sure he has help getting caught up.

valarie

In , amw <aymeewelch@...> wrote:

>

> Has anyone ever had problems with the school giving them a hard time

about all the time there child has missed ??? My son has missed close

to 40 days this year, and even though they have all been medical and

documented by his doctors, his school has been really nasty about it,

sending nasty letters home, threatening to charge my husband and I

will allowing him to be so " truant " ... they have just been really

nasty. I have been into his school more times then I can count, and I

know there isn't anything they can do because all the absences are

medicaly documented, but still its really irratating that they act

like we are just choosing to not send him or something.

> aymee

>

> osdbmom <osdbmom@...> wrote:

> ---

> Heres a nother idea. One yr what we did for Savannah was that she did

> do the make up work, but not the full assignement. As long as she

> understood the way to do the work, she had only to make up,say, all

> the odd numbers, or all the evens, or do half an assignment, or even

> an alternate assignment along the same lines.

>

> valarie

>

> In , Barbara Jimenez <mother5590@> wrote:

> >

> > Yes, I actually was dealing with this last year with my daughter.

> She is now on bedrest because she is 25wks pregnant and is having

> contractions. ( she is a senior) she has an IEP and got penalized

> repeated last year with her 504 so I worked by butt off to get her an

> IEP. She will have to keep working to graduate next year but I had to

> switch her to the Alternative school to get her anything. I did not

> want to because most of the kids are on drugs or other Juvenile

> Delinquint problems. ( yes this is not a prejudice this is what is

> true) Anyway Lucas had it good last year due to the specifice staff

> member but this year has been horrible. They require him to make up

> ALL of his work and they take off points or give him Zeros if he does

> not get it in or it is very late. I have brought the NO makeup up to

> them and they refuse. I am most concerned about the future. He is only

> 6th grade and it does not really count but what happens with High

> School. He should

> > not have to an alternative school because of his health. I had the

> same problems in WA state but it was even harder to get his IEP going

> than this part. It took 3 years because of his IQ being 145 they said

> his health was not effecting his grades. It was only a matter of time.

> I am not going to give up but I have to find the right place to push

> and the time. My hands are pretty full going to the OB Triage at the

> hospital 2-3 X a week plus other doctors appts. Not doing much else

> for now.

> >

> > BARBIE

> >

> >

> >

> > Barbie

> >

> >

> > He has an IEP but they are telling me that it does not matter. I am

> very frustrated with the teachers this year and the Special Ed teacher

> is useless. I have had 4 meetings with all kinds of promises.

> >

> > Barbie--

> > I would be upset, too. Bri's IEP says that any work he misses due to

> absences cannot be counted against him (an idea I received from this

> group). This makes it possible for him to miss school and not be

> constantly trying to catch up. The school has been awesome about

> this--and I do know we are fortunate. Have you tried calling the

> Superintendent' s office?? IEP is a Federal law the school must

abide by.

> > Sandi, mom to , age 15--CVID

> >

> >

[Guest guest]

HE has an IEP in place! and has for 5 years!!! Getting that in Wa state is

another story!!!

 BARBIE 

Barbie

> >

> >

> > He has an IEP but they are telling me that it does not matter. I am

> very frustrated with the teachers this year and the Special Ed teacher

> is useless. I have had 4 meetings with all kinds of promises.

> >

> > Barbie--

> > I would be upset, too. Bri's IEP says that any work he misses due to

> absences cannot be counted against him (an idea I received from this

> group). This makes it possible for him to miss school and not be

> constantly trying to catch up. The school has been awesome about

> this--and I do know we are fortunate. Have you tried calling the

> Superintendent' s office?? IEP is a Federal law the school must

abide by.

> > Sandi, mom to , age 15--CVID

> >

> >

[Guest guest]

He is already sick with a sinus infections after being late for a week. He is

sleeping 12-16 hours per day. I think partly because he is not getting enough

gamma globulin since his psych meds caused him to gain 35lbs in the last 2 mo. I

am trying to get lab work but he is refusing. I am really frustrated. I just

had a long conversation with him and he is very depressed right now about life

in general. One of his friends at school committed suicide last week. So that

is just adding to the problems we were already having. He seems to think suicide

is his way out. Frightening for a parent. He has been suicidal off and on since

he was 3. Breaks my heart.

BARBIE

Barbie

You might ask him to wait until April and then ask for an IV infusion to last 3

weeks and then go off until the fall.

Barbie--

Now that Bri is sick--I think with a sinus infection (which will be documented)

I have more leverage. We shall see...I'm going to take him to the Peds within a

few days.

How did the SubQ go???

Sandi, mom to , age 15--CVID

[Guest guest]

.. It always upsets me when someone actually puts it out there and people blame

them when it has been happening

already but no one said or gave anyone any rights around it.

I was not very clear was I ? I was referring to the idea that this has been

going on forever and now Obama is trying to be upfront ( or possibly just adding

funding) about doing it and he is getting blamed for being open honest and

upfront. I have had this happen in other areas of my life especially in my work

life that I step out and become transparent and then I get lambasted even though

there is NOTHING new about what I am doing. I just find people like to keep

things covert so that they do not have to face it. I was not upset with you only

the subject of healthcare in general. We are so closed to new ideas as a

population. I try really hard to research and come up with the pros and cons of

things but living her in OK I find people want things to not change or even get

better. Just keep it the same even if it is totally dysfunctional. It is

frustrating to me. I am sorry if you felt I came after you. I am so impressed

with your sensitivity around the

needs of your children. You have taught me a great deal. Bless your boys!!

BARBIE

________________________________

From: Pattie Curran <catholicmomof3@...>

Sent: Thursday, January 29, 2009 2:49:08 PM

Subject: Barbie

Hey-Sorry if I misunderstood :-)

In your email you said it always upsets you.so that is why I assumes you

were upset by my post. Here is your original response I highlighted the

part that made me think you were upset with my post.

SADLY this is what is already happening. NO one has been able to opt out

anywhere in the country that I know of. If you go to the doctor you are a

part of the records since they are being put online by most doctors offices.

This has nothing to do with OBAMA but has been happening already covertly

for at least 10 years. Our community of Bellingham WA was one of the first 5

in the nation to go to a community record about 10 years ago. They just did

it and NO ONE gave consent except to consent for treatment. All hospitals in

the US already to this and they do not get consent at all that I am aware of

.. Only the HIPPA protections. Basically if you plan to get health care in

the US you will be a part of the records. It always upsets me when someone

actually puts it out there and people blame them when it has been happening

already but no one said or gave anyone any rights around it.

BARBIE

I am sorry if I misunderstood :-) <smile> No worries! I just wanted to

make sure no one was upset with me for sending the email alert..

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

What about my post made you think that I was upset. I was not upset just

stating my experience. I am trying to figure out when people misunderstand

what is going on. I know that I can sound passionate about things. I do know

that this has been going on for a very long time in our country. Most people

have no idea but it has its pros and cons. I was a part of several work

groups in our community as a health care provider and they took the time to

get our input. It was very interesting because our community outcomes in

many areas improved due to better communication for patients. But I surely

can understand the privacy issues. I think in this day and age it is

inevitable since all of our financial info is already on line with or

without our permission. This is just furthering the process. I am not sure

it has as much to do with government as with health care.

BARBIE

[Guest guest]

My understanding of the concerns surrounding this federal funding is that

the government will have access to your medical records because they are

paying for it. A lot of facilities have moved to electronic medical records

and I think that, overall, it is a good thing to aid communication.

However, having the government pay for this and set up a " universal " system

will make it a lot harder to keep your information private. The clinics and

hospitals that have been doing it up to this point have been paying for it

on their own dime and don't link to all facilities across the country.

There have already been numerous instances of hospital personnel (nurses,

therapists, staff, etc) access patient's records they have no business of

accessing. If they get caught, they lose their jobs. Think of the ones

that don't get caught. Then, imagine that on a national scale - it will

only get worse.

Just my opinions!

Mom to , 6 - GSD, PIDD, and probable secondary mito

Meredith, 4 - GSD, PIDD, and probable secondary mito

, 9 - healthy

Carmel, IN

www.caringbridge.org/visit/mhobbs

From: [mailto: ] On Behalf Of

Barbara Jimenez

Sent: Thursday, January 29, 2009 4:13 PM

Subject: Re: Barbie

.. It always upsets me when someone actually puts it out there and people

blame them when it has been happening

already but no one said or gave anyone any rights around it.

I was not very clear was I ? I was referring to the idea that this has been

going on forever and now Obama is trying to be upfront ( or possibly just

adding funding) about doing it and he is getting blamed for being open

honest and upfront. I have had this happen in other areas of my life

especially in my work life that I step out and become transparent and then I

get lambasted even though there is NOTHING new about what I am doing. I just

find people like to keep things covert so that they do not have to face it.

I was not upset with you only the subject of healthcare in general. We are

so closed to new ideas as a population. I try really hard to research and

come up with the pros and cons of things but living her in OK I find people

want things to not change or even get better. Just keep it the same even if

it is totally dysfunctional. It is frustrating to me. I am sorry if you felt

I came after you. I am so impressed with your sensitivity around the

needs of your children. You have taught me a great deal. Bless your boys!!

BARBIE

________________________________

From: Pattie Curran <catholicmomof3@...

<mailto:catholicmomof3%40gmail.com> >

<mailto:%40>

Sent: Thursday, January 29, 2009 2:49:08 PM

Subject: Barbie

Hey-Sorry if I misunderstood :-)

In your email you said it always upsets you.so that is why I assumes you

were upset by my post. Here is your original response I highlighted the

part that made me think you were upset with my post.

SADLY this is what is already happening. NO one has been able to opt out

anywhere in the country that I know of. If you go to the doctor you are a

part of the records since they are being put online by most doctors offices.

This has nothing to do with OBAMA but has been happening already covertly

for at least 10 years. Our community of Bellingham WA was one of the first 5

in the nation to go to a community record about 10 years ago. They just did

it and NO ONE gave consent except to consent for treatment. All hospitals in

the US already to this and they do not get consent at all that I am aware of

.. Only the HIPPA protections. Basically if you plan to get health care in

the US you will be a part of the records. It always upsets me when someone

actually puts it out there and people blame them when it has been happening

already but no one said or gave anyone any rights around it.

BARBIE

I am sorry if I misunderstood :-) <smile> No worries! I just wanted to

make sure no one was upset with me for sending the email alert..

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

What about my post made you think that I was upset. I was not upset just

stating my experience. I am trying to figure out when people misunderstand

what is going on. I know that I can sound passionate about things. I do know

that this has been going on for a very long time in our country. Most people

have no idea but it has its pros and cons. I was a part of several work

groups in our community as a health care provider and they took the time to

get our input. It was very interesting because our community outcomes in

many areas improved due to better communication for patients. But I surely

can understand the privacy issues. I think in this day and age it is

inevitable since all of our financial info is already on line with or

without our permission. This is just furthering the process. I am not sure

it has as much to do with government as with health care.

BARBIE

[Guest guest]

I know what you are saying but what people forget is that if you have Medicaid,

Medicare, Veterans, local, State or Federal government or any other government

program you will be a part of a database. I am also finding that the larger

insurance companies are keeping medical databases.they send out surveys to get

you to divulge information and also get information to process claims and they

DO keep it online to access for future claim processing. I think i was naive

to think it was not happening. Look at the car insurance companies now keeping

track of your credit and anything else they want to increase your rates. The

computer has changed everything mostly because of the ability to keep these

databases and to be able to manipulate the information for reports. The true

basis of it is still MONEY to be able to reduce costs but I think we know that

it really does not do that but opens up all forms of potential abuse. I think as

health advocates we are

going to have to think fast to protect ourselves but fighting it happening is

probably a losing battle. JUST MY 2 CENTS.

BARBIE

________________________________

From: Hobbs <hobbsfamily@...>

Sent: Thursday, January 29, 2009 4:00:27 PM

Subject: RE: Barbie

My understanding of the concerns surrounding this federal funding is that

the government will have access to your medical records because they are

paying for it. A lot of facilities have moved to electronic medical records

and I think that, overall, it is a good thing to aid communication.

However, having the government pay for this and set up a " universal " system

will make it a lot harder to keep your information private. The clinics and

hospitals that have been doing it up to this point have been paying for it

on their own dime and don't link to all facilities across the country.

There have already been numerous instances of hospital personnel (nurses,

therapists, staff, etc) access patient's records they have no business of

accessing. If they get caught, they lose their jobs. Think of the ones

that don't get caught. Then, imagine that on a national scale - it will

only get worse.

Just my opinions!

Mom to , 6 - GSD, PIDD, and probable secondary mito

Meredith, 4 - GSD, PIDD, and probable secondary mito

, 9 - healthy

Carmel, IN

www.caringbridge. org/visit/ mhobbs

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

Barbara Jimenez

Sent: Thursday, January 29, 2009 4:13 PM

groups (DOT) com

Subject: Re: Barbie

.. It always upsets me when someone actually puts it out there and people

blame them when it has been happening

already but no one said or gave anyone any rights around it.

I was not very clear was I ? I was referring to the idea that this has been

going on forever and now Obama is trying to be upfront ( or possibly just

adding funding) about doing it and he is getting blamed for being open

honest and upfront. I have had this happen in other areas of my life

especially in my work life that I step out and become transparent and then I

get lambasted even though there is NOTHING new about what I am doing. I just

find people like to keep things covert so that they do not have to face it.

I was not upset with you only the subject of healthcare in general. We are

so closed to new ideas as a population. I try really hard to research and

come up with the pros and cons of things but living her in OK I find people

want things to not change or even get better. Just keep it the same even if

it is totally dysfunctional. It is frustrating to me. I am sorry if you felt

I came after you. I am so impressed with your sensitivity around the

needs of your children. You have taught me a great deal. Bless your boys!!

BARBIE

____________ _________ _________ __

From: Pattie Curran <catholicmomof3@ gmail.com

<mailto:catholicmom of3%40gmail. com> >

groups (DOT) com <mailto:% 40groups. com>

Sent: Thursday, January 29, 2009 2:49:08 PM

Subject: Barbie

Hey-Sorry if I misunderstood :-)

In your email you said it always upsets you.so that is why I assumes you

were upset by my post. Here is your original response I highlighted the

part that made me think you were upset with my post.

SADLY this is what is already happening. NO one has been able to opt out

anywhere in the country that I know of. If you go to the doctor you are a

part of the records since they are being put online by most doctors offices.

This has nothing to do with OBAMA but has been happening already covertly

for at least 10 years. Our community of Bellingham WA was one of the first 5

in the nation to go to a community record about 10 years ago. They just did

it and NO ONE gave consent except to consent for treatment. All hospitals in

the US already to this and they do not get consent at all that I am aware of

.. Only the HIPPA protections. Basically if you plan to get health care in

the US you will be a part of the records. It always upsets me when someone

actually puts it out there and people blame them when it has been happening

already but no one said or gave anyone any rights around it.

BARBIE

I am sorry if I misunderstood :-) <smile> No worries! I just wanted to

make sure no one was upset with me for sending the email alert..

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

What about my post made you think that I was upset. I was not upset just

stating my experience. I am trying to figure out when people misunderstand

what is going on. I know that I can sound passionate about things. I do know

that this has been going on for a very long time in our country. Most people

have no idea but it has its pros and cons. I was a part of several work

groups in our community as a health care provider and they took the time to

get our input. It was very interesting because our community outcomes in

many areas improved due to better communication for patients. But I surely

can understand the privacy issues. I think in this day and age it is

inevitable since all of our financial info is already on line with or

without our permission. This is just furthering the process. I am not sure

it has as much to do with government as with health care.

BARBIE

[Guest guest]

I am sorry Bri and to suffer so much to get there. Has he done any testing yet?

It would be good to get at least some labs since he has been over for several

months.

________________________________________________________________

Hi Barbie,

The new Immuno did test after the four month period (of course Bri has almost

no Pneumovax titers). However, he can't re-vaccinate Bri with Pneumovax because

he is allergic to it. He talked about de-sensitizing him, but when Bri got the

flu-pneumonia-flu combo, he quickly changed his mind about that. It isn't

always successful anyway. Plus, we would have to wait for six weeks to get

results and Bri obviously cannot attend school without Ig replacement.

It just broke my heart the day he found out he was going back on. He said,

" It's a good thing I'm going back on SubQ because I'm getting tired of being

nice about being sick. " Thankfully, he is getting back on treatment before the

anger sets in. We've been talking about it more to make sure there isn't any

residual anger, but I think he's just been too tired to be angry.

Sandi, mom to , age 15--CVID