Help

February 6, 2003

In a message dated 2/6/2003 9:49:49 AM Pacific Standard Time, dale@...

writes:

> The only other suggestion I have is that if you are otherwise happy with

> your

> doctors and only unhappy in their lack of knowlege, is, EDUCATE THEM!

I'm pretty new here. My daughter was diagnosed with an immune deficiency

during a recent hospitalization for a very severe pneumonia. After her

diagnosis I got on the computer and started reading, joined this group, and

was directed to the IDF chapter leader. She sent me some information, (thank

you Dale), and also sent a packet to our doctor. I just realized this minute

that that's probably why he ordered more tests on her last time. I had been

asking him what the actual name of her deficiency was and he seemed not to

know. Now all of a sudden he's looking at her B cells and T cells, etc.. I

would urge you to learn as much as you can and then educate your doctor or

find a new one. Good luck to you~~

Belinda

Lacey's mom, (15, CdLS, IgG deficiency)

Pittsburg, CA

February 6, 2003

First, big hugs to you! You sound so terribly worried and scared! Several

of the more experienced people on this list will respond soon, but I was

on-line when you message came across, so I'll tell you my story. The more

experienced people can give you more details.

My daughter Rebekah makes no IgA. Her total IgG is low and her IgG3 and

IgG4 subclasses are low. She has had no response to her vaccinations

(except to become acutely ill!) which means that her vaccinations haven't

" taken " . She had lots of non-life-threatening infections from birth. She

developed anemia and that is how they diagnosed her immune problem at age 2.

She now receives IVIG (intravenous immunoglobulin) every 21 days at home and

in on antibiotics every day to prevent infections for getting serious.

You can read more about immune deficiencies at this website.

http://www.primaryimmune.org/

You definitely should call the Immune Deficiency Foundation today at this

number:

800.296.4433

There likely is a lot more that can be done for your son!

Pam

wife to (16 years)

mother to , 9, Hannah, 6, Rebekah, 3, and Leah, 1

Rebekah has CVID and maybe some other stuff

help

my son has iga deficiency and his igg subclasses are not working

well all his immunegollbins are low and they say there is no

treatment that we will treat acute infections. he has asthma anemia

and ezcema. he is also having problems with his right leg and hip. I

was told to keep him in a bubble wash hands often and to proct him

is that all that is out there???????????????????

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

February 6, 2003

from Dale, Mom to Katy, CVID, age 18

Pam -- you sound experienced to me!

Also, from the IDF you can secure names of chapter leaders in your state (if

there are any) who can direct you to immunologist who are familiar with

testing and treatment.

Your doctors are correct that there is not a cure YET, but there is treatment

and that treatment (IVIG or SubQIG) will prevent an awful lot of the

infections that can cause damage for his future.

The only other suggestion I have is that if you are otherwise happy with your

doctors and only unhappy in their lack of knowlege, is, EDUCATE THEM! Katy's

doctor had NEVER seen a patient with CVID, never read about it, knew NOTHING.

But, she loved Katy and was willing to learn. So, we learned together. She

shared her research with me, I shared my research with her - and Katy

benefitted from her care! If that's the case, please give your doctors this

number: 1-877-666-0866. That's the number for the consulting immunologist

program and is free to doctors who are caring for a patient with PID. They

can ask the detailed questions that they need to know about proper testing and

treatment that is absolutely the most current available. No textbook on this

disease will be up-to-date because new research is being done as we speak.

Also, if you want to share with the group what state you are in, you might

locate others in your area that can guide you to knowledgable doctors -- but

that's up to you.

Hang in there. There's a few questions I would like to ask. Feel free to

answer them or ignore them. #1 what is your first name? #2 How old is your

son? #3 Has he had the titers checked to his vaccinations?

God bless you today and you sort through all these replies, but most of all I

pray that you'll feel empowered to do whatever is necessary to get your son

the help he needs and deserves. That's our job as parents and this group is

ready to give you as much information as you wish. We just don't want to

totally overwhelm you. So, a simple answer is No! That's not all that can be

done for your son.

In His service,

Dale

February 7, 2003

dauson is 20 months old and the pedatricition said she does not know the

significance of his igg subclasses being low. I am scared because the doctor

doesn't seem to know any thing about this....

Re: help

:

I'll write more later but please remind me, how old is your son? Because we

were told to just protect our daughter and wait also, because we were waiting

to see how all the additional tests came back, waiting to do more

immunizations and test responses, plus there's always the hope with those

under 2 or 3 yrs old that their systems will improve with age.

In fact, we were told our daughter's problems were NOT transient and would

not improve, but almost all of her problems DID improve as she got older. So

there may be hope.

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

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

other defs)

February 7, 2003

my name is stephanie my son is dauson age 20 months. They have not yet checked

his tithers . The doc said she is afraid his immunizations haven't worked but I

am not sure when she is going to check them. Thank you for your time and

knowledge it is very much appreciated..

re: help