Re: Welcome to PedPID@onelist.com

[Guest guest]

Hi my name is Kate.

I have a daughter named . She turned 15 this past November.

She has endured the long road involved in being immune deficient.

Let me say that my family has also endured this life style.

She was not diagnosed until the age of seven. She had been diagnosed with

severe asthma (which was wrong). She started IVIG treatments at 8 and

finished them last winter at 14. She received them every 2nd week through a

port.

Now she is off all treatments and is doing quite well. She does become sick

but less frequent and has not required antibiotics lately.

Life with her is like a roller coaster. It is a different lifestyle than

most normal people and we have adapted well.

I look forward to sharing on-line experiences and learning from others.

It has been difficult not having other people understand or fathom what life

is really and has been like.

Kate

Welcome to PedPIDonelist

>Hello,

>

>Welcome to the PedPID list.

>

>This list was created with the idea that every day life with a PID child is

not

>a bed of roses. There are alot of chronic issues to deal with and that can

wear

>

>on a family and more specifically on the primary caregiver.

>

>Everyone please take a moment to introduce yourself. I look forward to

>having other people to talk to and share experiences about dealing with the

>precautions and procedures and medicines that are involved with these

diseases.

>

>I hope this list will serve as a place to vent the trivial and not so

trivial

>comments and questions of families and caregivers of PIDers.

>

>My daughter Macey was originally diagnosed with CVID and had a port put in.

>Then her IgA & IgM began to rise so they checked her antibodies and found

that

>some didn't respond. So she has selective antibody deficiency. At times

her

>IgG will go up and down so she wanes from CVID to Selective Antibody

Deficiency.

>

> When they repeat the antibody levels this summer they'll determine which

>diagnosis she'll be stuck with.

>

>Macey takes Propulsid and Pepcid for GERD, Atarax and Zyrtec for allergies

(even

>

>though she has little IgE) and for eczema on her upper arms and upper legs,

>Intal and Albuterol twice a day for asthma, May-Vita for anemia, Lactulose

for

>Functional Fecal Retention, Septra for left kidney reflux Grade I,

Vancenase for

>

>sinusitis and a hx of polyps, and every three weeks gets 10 gms of

Gammimmune N

>10%.

>

>She is kept at home at least until we repeat the immune levels this summer,

her

>immunologist says she might be able to go out and about after that.

>

>I've also begun a Pediatric PID web page. It will have various information

that

>

>might be necessary to a parent or caregiver.

>

>http://www.netpage.org

>

>Please feel free to post at your convenience. I expect this to be a low

>maintenance, easy flowing list with steady traffic and just good ole humor

>and advice amongst friends.

>

>

[Guest guest]

I am trying to access PedPID, put in name and correct password, cannot get in.

Why?

Thanks,

C. West

PedPID-owneronelist wrote:

> Hello,

>

> Welcome to the PedPID list.

>

> This list was created with the idea that every day life with a PID child is

not

> a bed of roses. There are alot of chronic issues to deal with and that can

wear

> on a family and more specifically on the primary caregiver.

>

> Everyone please take a moment to introduce yourself. I look forward to having

> other people to talk to and share experiences about dealing with the

precautions

> and procedures and medicines that are involved with these diseases.

>

> I hope this list will serve as a place to vent the trivial and not so trivial

> comments and questions of families and caregivers of PIDers.

>

> I've also begun a Pediatric PID web page. It will have various information

that

> might be necessary to a parent or caregiver.

>

> http://www.netpage.org

>

> Please feel free to post at your convenience. I expect this to be a low

> maintenance, easy flowing list with steady traffic and just good ole humor and

> advice amongst friends.

>

>

[Guest guest]

I am trying to access PedPID, put in name and correct password, cannot get in.

Why?

Thanks,

C. West

PedPID-owneronelist wrote:

> Hello,

>

> Welcome to the PedPID list.

>

> This list was created with the idea that every day life with a PID child is

not

> a bed of roses. There are alot of chronic issues to deal with and that can

wear

> on a family and more specifically on the primary caregiver.

>

> Everyone please take a moment to introduce yourself. I look forward to having

> other people to talk to and share experiences about dealing with the

precautions

> and procedures and medicines that are involved with these diseases.

>

> I hope this list will serve as a place to vent the trivial and not so trivial

> comments and questions of families and caregivers of PIDers.

>

> I've also begun a Pediatric PID web page. It will have various information

that

> might be necessary to a parent or caregiver.

>

> http://www.netpage.org

>

> Please feel free to post at your convenience. I expect this to be a low

> maintenance, easy flowing list with steady traffic and just good ole humor and

> advice amongst friends.

>

>

[Guest guest]

Are you trying to access the email list or the web page?

Ursula Holleman

www.netpage.org/macey/ <http://www.netpage.org/macey/> - Macey's page

www.netpage.org/ <http://www.netpage.org/> Ped PID page

[Guest guest]

Dear Jody,

I am correct in hearing you say that you child has Transient

Hypogammaglobulinemia, CVID and AT all in one? I have never heard of that.

Could you please explain further.....or do you have three children each with

one of these diagnosis'.

Look forward to hearing from you,

Autumn Mom to Mark Cd5 PID/ Samter's syndrome, A1A

[Guest guest]

Dear Jody,

I am correct in hearing you say that you child has Transient

Hypogammaglobulinemia, CVID and AT all in one? I have never heard of that.

Could you please explain further.....or do you have three children each with

one of these diagnosis'.

Look forward to hearing from you,

Autumn Mom to Mark Cd5 PID/ Samter's syndrome, A1A

[Guest guest]

Hi-

For some reason I can't access the archives that you are talking about. I

would love to speak to others who might have similar situations and I think

this might be the best way to go about it. My 4 year old son has been

diagnosed with Transient Hypogammaglobulinemia, Ataxis Telangiectasia (AT),

and CVID. I need some support, advise and relief. Thanks. Jody

Welcome to PedPIDonelist

>Hello,

>

>Welcome to the PedPID list.

>

>This list was created with the idea that every day life with a PID child is

not

>a bed of roses. There are alot of chronic issues to deal with and that can

wear

>on a family and more specifically on the primary caregiver.

>

>After view the archives and catching up on who is who everyone please take

a

>moment to introduce yourself. I look forward to having other people to

talk to

>and share experiences about dealing with the precautions and procedures and

>medicines that are involved with these diseases.

>

>I hope this list will serve as a place to vent the trivial and not so

trivial

>comments and questions of families and caregivers of PIDers.

>

>There is also a Pediatric PID web page. It will have various information

that

>might be necessary to a parent or caregiver.

>

>http://www.netpage.org/PedPID

>

>Please feel free to post at your convenience. I expect this to be a low

>maintenance, easy flowing list with steady traffic and just good ole humor

and

>advice amongst friends.

>

>

[Guest guest]

Hi-

For some reason I can't access the archives that you are talking about. I

would love to speak to others who might have similar situations and I think

this might be the best way to go about it. My 4 year old son has been

diagnosed with Transient Hypogammaglobulinemia, Ataxis Telangiectasia (AT),

and CVID. I need some support, advise and relief. Thanks. Jody

Welcome to PedPIDonelist

>Hello,

>

>Welcome to the PedPID list.

>

>This list was created with the idea that every day life with a PID child is

not

>a bed of roses. There are alot of chronic issues to deal with and that can

wear

>on a family and more specifically on the primary caregiver.

>

>After view the archives and catching up on who is who everyone please take

a

>moment to introduce yourself. I look forward to having other people to

talk to

>and share experiences about dealing with the precautions and procedures and

>medicines that are involved with these diseases.

>

>I hope this list will serve as a place to vent the trivial and not so

trivial

>comments and questions of families and caregivers of PIDers.

>

>There is also a Pediatric PID web page. It will have various information

that

>might be necessary to a parent or caregiver.

>

>http://www.netpage.org/PedPID

>

>Please feel free to post at your convenience. I expect this to be a low

>maintenance, easy flowing list with steady traffic and just good ole humor

and

>advice amongst friends.

>

>

[Guest guest]

please remove me from pedpid list thank you malibu742@...

[Guest guest]

PedPID-owneronelist wrote:

>

> Hello,

>

> Welcome to the PedPID list.

>

> This list was created with the idea that every day life with a PID child is

not

> a bed of roses. There are alot of chronic issues to deal with and that can

wear

> on a family and more specifically on the primary caregiver.

>

> After view the archives and catching up on who is who everyone please take a

> moment to introduce yourself. I look forward to having other people to talk

to

> and share experiences about dealing with the precautions and procedures and

> medicines that are involved with these diseases.

>

> I hope this list will serve as a place to vent the trivial and not so trivial

> comments and questions of families and caregivers of PIDers.

>

> There is also a Pediatric PID web page. It will have various information that

> might be necessary to a parent or caregiver.

>

> http://www.netpage.org/PedPID

>

> Please feel free to post at your convenience. I expect this to be a low

> maintenance, easy flowing list with steady traffic and just good ole humor and

> advice amongst friends.

>

>