Thank You All

April 16, 2007

I live in San TX. What doctor are you going to see?

I have two children with a possible undiagnosed immune problem. Seems like

they lack antibodies to some of their vaccines.

Feel free to email directly tcm_marks@... if you would like to talk!! I

would love to chat some more.

Do you know that someone is trying to sent up a support group for PID? The

first meeting is this Tuesday.

Take care

Theresa

-Jacinto <smile_nocode@...> wrote:

I just wanted to thank everyone that has responded. I don't much about

IGAD and spend every free minute trying to learn more. I wish all of you the

best and am so thankful that I'm not 'alone' anymore. My son's pediatrician is

wonderful, yet told us right away that her knowledge of IGAD is limited. She

answers all the questions I have the best she can and is honest when she's not

sure and ask me to " write that one down for the specialist " . As mentioned before

my youngest son was diagnosed with Selective IGA, from what my pediatrician

says all other levels are normal however his IGA is at <9, whether that means

none or 9 we don't know at this point. The appointment with the specialist she

referred us to is still 2 weeks away!! So of course with my OCD I've been

consumed with sadness, despair and guilt and it's really taken a toll on my

health, my marriage and my job which only adds to the depression. What I don't

understand is how PID is considered a rare

disease

when it's estimated that apprx 1 in every 1000 has it? How is that rare???

thanks for listening,

Helotes, TX

---------------------------------

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Autos.

April 16, 2007

Theresa,

Our pediatrician is Dr. , our immuniologist (sp?) is Dr. Dilley, and I

just got a call today that an appointment opened up for this Wens and I jumped

at it. I can't really say I'm excited, but at least I'll know more that I do

now. I wasn't aware that there was a support group. I'd love to go but I still

have a hard time even thinking about IGAD without crying, much less talking

about it.

Theresa Marks <tcm_marks@...> wrote:

I live in San TX. What doctor are you going to see?

I have two children with a possible undiagnosed immune problem. Seems like they

lack antibodies to some of their vaccines.

Feel free to email directly tcm_marks@... if you would like to talk!! I

would love to chat some more.

Do you know that someone is trying to sent up a support group for PID? The first

meeting is this Tuesday.

Take care

Theresa

-Jacinto <smile_nocode@...> wrote:

I just wanted to thank everyone that has responded. I don't much about IGAD and

spend every free minute trying to learn more. I wish all of you the best and am

so thankful that I'm not 'alone' anymore. My son's pediatrician is wonderful,

yet told us right away that her knowledge of IGAD is limited. She answers all

the questions I have the best she can and is honest when she's not sure and ask

me to " write that one down for the specialist " . As mentioned before my youngest

son was diagnosed with Selective IGA, from what my pediatrician says all

other levels are normal however his IGA is at <9, whether that means none or 9

we don't know at this point. The appointment with the specialist she referred us

to is still 2 weeks away!! So of course with my OCD I've been consumed with

sadness, despair and guilt and it's really taken a toll on my health, my

marriage and my job which only adds to the depression. What I don't understand

is how PID is considered a rare

disease

when it's estimated that apprx 1 in every 1000 has it? How is that rare???

thanks for listening,

Helotes, TX

---------------------------------

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Autos.

April 16, 2007

I can understand what you are going through. It is tough. It is very

stressful. My daughter and son have other problems too. They both are

adrenally insufficient. Their adrenal gland does not make a steroid called

cortisol. The body needs this steroid daily and in times of stress (sicknesses

especially) it needs it even more.

We had no idea this was happening until my daughter became very ill. She

quickly became unresponsive in the ER. The ER could not figure out what was

wrong with her and she was flown by helicopter (without me, I had to drive) to

another hospital which put her in peds ICU. We finally found a Dr that figured

out she needed hydrocortisone (replacement cortisol). She came to after two

shots of hydrocortisone. Luckily things all worked out. She still crashes very

once in awhile. We go to the ER frequently. I have a hard time dealing with

the ER visits and even writing about it to you makes my stress rate soar!

I guess I feel like the kids are time bombs waiting to explode. I have no

explanation for what they have and that really makes it harder for me to deal

with. Although they do not compare to what some of these kids/parents go

through on this site. They are not sick everyday and they have more good days

than bad. I am very thankful for the good days.

Feel free to ask me anything. I just thought you may want to go to the

support group to gather more info. I understand if you are not ready. Just

wanted to let you know that it was there. They plan to have another meeting in

May.

all the best

Theresa

-Jacinto <smile_nocode@...> wrote:

Theresa,

Our pediatrician is Dr. , our immuniologist (sp?) is Dr. Dilley, and I just

got a call today that an appointment opened up for this Wens and I jumped at it.

I can't really say I'm excited, but at least I'll know more that I do now. I

wasn't aware that there was a support group. I'd love to go but I still have a

hard time even thinking about IGAD without crying, much less talking about it.