RE: Digest Number 4435

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- Would you please email me offline? We would love to exchange

information! My email is listed in the body. Thanks,

Darla

Mom to JT---16 y/o

CVID

Central Texas

From: [mailto: ]

Sent: Wednesday, February 11, 2009 11:44 AM

Subject: Digest Number 4435

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1a.

Re: IVIG and Neuro problems From: tracy ulvap

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1a.

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Posted by: " tracy ulvap "

<mailto:pavlutracy@...?Subject=%20Re%3A%20IVIG%20and%20Neuro%20problem

s> pavlutracy@... <pavlutracy> pavlutracy

Tue Feb 10, 2009 6:47 pm (PST)

Hi Darla.

I saw at the end of your message that you are in " Central Texas. " We live

in New Braunfels, but drive to Austin and San for our CVID needs. I

would love to know which docs you have seen, etc. Our son is 5, and was

just diagnosed in December. We will start IVIG in March. Any help would be

greatly appreciated. We are swimming in a sea of information and confusion!

Thank you!

-

From: Darla Bower < <mailto:centxpath%40austin.rr.com>

centxpath@...>

Subject: Re: IVIG and Neuro problems

<mailto:%40>

Date: Tuesday, February 10, 2009, 9:20 AM

Hi All - I just had to throw my 2 cents in here. My son's dx is CVID. His

whole life he has struggled with neuro issues with not one Doctor being able

to put a finger on it period -we have seen some great Specialists. His

Neurologist is listed as one of the top 500 Doctors in the entire US. Well

guess what ---the IVIG has had the added bonus of resolving some of the

neuro issues though IVIG was not prescribed " off-label " for this for him, it

was prescribed for the CVID. There are just no words to describe what this

means to us-for the first time in 16 years, we feel our son may have just a

SHOT at having a semi-normal life whatever normal is so I just can't worry

about it because we are now also in the category of being affected if there

is an IVIG shortage. I don't begrudge anyone for trying to help their

children, this is a horrible " whole family " disease. I would for one like

to see some research data if there is any on this very thing. Since we see

one of the top Docs in the field, I will be having this discussion with him

in March. If there is any such data out there that anyone knows of -please

let me know. Any other questions, please email me off-line as I would like

to maybe compare notes. Thanks for listening.

Thanks,

Darla

Mom to JT - 16 y/o

CVID

Central Texas