Re: Nadini IVIG

[Guest guest]

Nandini,

Where are you located? It would help if you could tell me the name of your

hospital and/or immunologist, but don't feel obligated.

Most experienced immunologists, particularly those affiliated with Jeffery

Modell Center's of Excellence, can run the needed tests. X-linked hyper-IgM is

considered an immune disorder and blood tests for this condition should be run

(e.g., CD40L and possibly others). If this condition is a possibility, I would

get it evaluated soon.

To learn about X-linked hyper-IgM syndrome, read the following:

http://www.primaryimmune.org/pubs/book_pats/e_ch08.pdf

Here is the Jeffery Modell's Expert Locater:

http://www.info4pi.org/expertlocator/index.cfm?section=expertlocator & CFID=125154\

84 & CFTOKEN=20411676

Finally, if you are not getting answers, I would urge you to call the IDF or

have your doctor contact IDF for a free consult. Every patient deserves the

benefit of early diagnosis.

http://www.primaryimmune.org/med_programs/immunologist_prog.htm

I think more people will chime in soon. It is helpful to sign your notes with

your name, your child's name, diagnosis, age, or something that helps families

know who they are talking to. = )

mom to Dani (4) CVID

[Guest guest]

, I live in San CA & our immunologist is Dr Sudhir Gupta at UC

Irvine. Infact we are going down there for our 1st IVIG infusionnext week.

Can I have this test run at UC Irvine ?

Where is the Jeffery Modell Center located ?

Thanks for your help.

Nandini

>From: Schulman <dietdoc@...>

>Reply-

>

>Subject: Re: Nadini IVIG

>Date: Thu, 21 Sep 2006 15:10:32 -0700 (PDT)

>

>Nandini,

>

>Where are you located? It would help if you could tell me the name of your

>hospital and/or immunologist, but don't feel obligated.

>

>Most experienced immunologists, particularly those affiliated with Jeffery

>Modell Center's of Excellence, can run the needed tests. X-linked

>hyper-IgM is considered an immune disorder and blood tests for this

>condition should be run (e.g., CD40L and possibly others). If this

>condition is a possibility, I would get it evaluated soon.

>

>To learn about X-linked hyper-IgM syndrome, read the following:

>http://www.primaryimmune.org/pubs/book_pats/e_ch08.pdf

>

>Here is the Jeffery Modell's Expert Locater:

>http://www.info4pi.org/expertlocator/index.cfm?section=expertlocator & CFID=12515\

484 & CFTOKEN=20411676

>

>Finally, if you are not getting answers, I would urge you to call the IDF

>or have your doctor contact IDF for a free consult. Every patient deserves

>the benefit of early diagnosis.

>http://www.primaryimmune.org/med_programs/immunologist_prog.htm

>

>I think more people will chime in soon. It is helpful to sign your notes

>with your name, your child's name, diagnosis, age, or something that helps

>families know who they are talking to. = )

>

>

>mom to Dani (4) CVID

>

>

[Guest guest]

Nandini,

I am not sure about UCI being able to run obscure immune studies. You could ask

Dr. G. and see what he thinks.

If he needs help, he (or his nurses) might be able to talk directly with Dr.

Stiehm or Dr. Chatila (head of the JMF Diagnostic Center for Primary

Immunodeficiencies). If UCI can not run all of the studies Dr. G. wants done,

and UCLA can, you might want to see if he is able to write a requisition order

to have the bloodwork done at UCLA. Also, UCI might have a contract with

another lab to ship blood for obscure tests. You will find that people, and

blood, often travel to get properly evaluated.

Doctors can always contact the IDF's immunologist program (FREE) for

consultation: 1-877-666-0866 or write tb@...

Dr. Talal Chatila

Modell Diagnostic Center for Primary Immunodeficiencies

UCLA School of Medicine/Mattel Children's Hospital.

Phone: (310) 825-6481 or (310) 825-9832

mom to CVIDer