....New Member here

[Guest guest]

Hi !!

Welcome to the group!! You have found a " trove " of wonderful ladies &

will be given lots of advice, encouragement & experience the " love "

taht goes around here!!!! No question is to big or too small. So, just

ask away!!!

My Blake is 14. he has CVID with Complete T-Cell Dysfunction. He gets

IVIG every 2 weeks(20 grams)

He also has several other things on his " plate " to deal with on a daily

basis(Asthma, GERD, Asperger's Syndrome, Osteoporosis & Rare Blood

Clotting disorder)

It is very frustrating to figure out the whole IVIG/Life situation for

a teenager let a lone on sho has the ither things to work through.

I hope is settling sown as far as " reactions " . Blake usually

gets Gammagard S/D. But for his last three treatments, he got Gammagard

Liquid. As of this Tuesday, he will ONLY Get the Gammagard S/D.

With the Liquid form, Blake has experienced Aseptic Meningitis twice!!!

It was very scary for us to witness & to see Blake endure so much pain.

he wound up inpatient both times for 2 days(That is such a joy..... to

be stuck in a room with a pubertal teen boy who was dilusional at times

& very frightened by what he was experiencing........NOT!!!!

We are praying that will do well with her next infusion.

What Brand of IVIG is she getting. How fast is her rate. A lot of

areactions DO happen if the rate is too fast! Blake has a set rate tath

we work up to slowly(takes 1-1/2 hrs. to get to his max rate)Once he is

at 65-70, we just let it take it's time run in. Sometimes if he is

doing well & shows no problems, we go up to 80. But that can be a push

for him. How often is being infused & do you premedicate. We

started out premedicating with Benadryl, Solumedrol(steroid) &

sometimes Tylenol. We are now not having to pre med.(but since the

Liquid was used, we DID!!! & probably will this Tuesday just to make

sure Blake has no reactions!!!

Well gotta go. Blake needs food, again.....He is my bottomless pit!!!

S. Mom to Blake 14 CVIS with Complete T-Cell Dysfunction

http://www3.caringbridge.org/sc/blakester

Come & Experience the Greatest Adventure of MY Lifetime!!!!!