Re: Intro YES WE HAVE BEEN THERE!

[Guest guest]

From Michele, Nana to Tony-3yrs and Gavin-6wks w/Di

Dear Lori G,

Thank you for your email. It is so good to find someone who knows of the

syndrome (not so good that your child has it though). Gavin has survived

the heart crisis, is still trying to survive the lung crisis and now has a

fever and elevated wbc to which they have not yet found the cause, but it

points to chest tubes that have been in over a month. He was just starting

to look like he was doing better when the fever set in. Now if the

Pulmonary doc can just convince the Intensivist to take them out, maybe he

will improve.

The immune deficiency has just been diagnosed and he has had his first dose

of IVIG. They say that they will retest over time to decide how often he

will need the IVIG but I thought the test took 3 weeks but maybe it was just

this first one. They had told us that they were not doing that test yet as

they did not want to take the blood from, they take enough already and he

needs transfusions every 2-3 days.

We are still confused about a lot of stuff but in time we will learn I

guess. I expect it will be a long road after reading some of your stories

and posts. It is nice to find others dealing with similar problems.

<>< <>< <>< <>< <>< <>< <>< <>< <>< <><>< <>< <><

Michele T, FL PWME/1994, FMS/1990, SSDI

Proverbs 3:5-6 " Trust in the Lord ..... He will direct thy paths. "

http://home.tampabay.rr.com/townsend

[Guest guest]

We will continue to pray! The Pulmonologist are great at All Children's.

Austin has been seeing them since he was an infant.

Take Care!

Lori

Re: Intro YES WE HAVE BEEN THERE!

>

>

>From Michele, Nana to Tony-3yrs and Gavin-6wks w/Di

>

>Dear Lori G,

>Thank you for your email. It is so good to find someone who knows of the

>syndrome (not so good that your child has it though). Gavin has survived

>the heart crisis, is still trying to survive the lung crisis and now has a

>fever and elevated wbc to which they have not yet found the cause, but it

>points to chest tubes that have been in over a month. He was just starting

>to look like he was doing better when the fever set in. Now if the

>Pulmonary doc can just convince the Intensivist to take them out, maybe he

>will improve.

>

>The immune deficiency has just been diagnosed and he has had his first dose

>of IVIG. They say that they will retest over time to decide how often he

>will need the IVIG but I thought the test took 3 weeks but maybe it was

just

>this first one. They had told us that they were not doing that test yet as

>they did not want to take the blood from, they take enough already and he

>needs transfusions every 2-3 days.

>

>We are still confused about a lot of stuff but in time we will learn I

>guess. I expect it will be a long road after reading some of your stories

>and posts. It is nice to find others dealing with similar problems.

><>< <>< <>< <>< <>< <>< <>< <>< <>< <><>< <>< <><

>Michele T, FL PWME/1994, FMS/1990, SSDI

>Proverbs 3:5-6 " Trust in the Lord ..... He will direct thy paths. "

>http://home.tampabay.rr.com/townsend

>

>

>

>

>------------------------------------------------------------------------

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>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.

>

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