RE: Hello, update and advice please!!

[Guest guest]

- having a fever while having a port is cause enough to go to the

doctors even the ER. Macey has been septic from 3 port infections and one

almost took her life. Protocol here for having a port means a blood culture

from the port with any fever. Please seek treatment.

Ursula Holleman

mom to (11 yrs old) and Macey (9 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

[Guest guest]

- having a fever while having a port is cause enough to go to the

doctors even the ER. Macey has been septic from 3 port infections and one

almost took her life. Protocol here for having a port means a blood culture

from the port with any fever. Please seek treatment.

Ursula Holleman

mom to (11 yrs old) and Macey (9 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

[Guest guest]

,

That as happened to four times. The doctors could never figure

out what is going on. They have put her in a knee brace (the pain was

in the same spot on the inside of her knee. We have had every test they

could think of and after four or five days go by it is gone. Our

specialist thought it was a form of arthritis but when she did blood

work it didn't show anything. It is still a mystery to us today. Good

luck I hope you find out what is going on and hope is feeling

better soon. Take good care of yourself because as moms we forget to do

this.

Lorri ( 14 years CVID)

Hello, update and advice please!!

[Guest guest]

I'm not an expect by any stretch of the imagination, but it struck me as I

read your post that maybe needs more IVIG each time or needs her

infusions more often.

Rebekah was on the standard dose of IVIG for 8 months and it helped but did

not stop the troubling infections. She had the niggling infections and some

whoppers and was on continuous antibiotics. Her trough numbers were always

below the therapeutic range. Our ped was so nice and let us run that test

every 3 weeks for several months to prove that she wasn't improving! Great

guy!

But we had to really put our foot down with the immuno to get a higher dose.

It appear that Rebekah metabolizes the IVIG faster than a typical

pre-schooler. Goody....

He raised her dose by 25% and WOW what a difference! She got out of bed for

the first time after a 12.5 gram dose and has had maybe two small infections

in a year. She gets her dose every 3 weeks and definitely couldn't go four

weeks.

Maybe has gained enough weight or uses IVIG faster than normal. Have

your looked at her trough values lately? Just my thoughts this morning.

{{{HUGS}}} to you and and your son with the thumb! When it rains, it

pours!

Pam

wife to (17 years)

mother to , 10, Hannah, 8, Rebekah, 4, and Leah, 2

Hello, update and advice please!!

Hello everyone, I have been lurking (through necessity) for the last

couple of months and firstly would like to say hi to those who are

new to the group..and not so new to the problems we all face day to

day.

We have had a really bad year with so far this year, she is