immuno update

January 20, 2005

had his 3 month check up with the immuno. He was impressed with his

infection rate or lack thereof. He feels that the IVIG's are finally doing their

job and keeping him healthy. He is concerned like me about his lack of vein

access and the torture he is going thru each time to get an IV started.

We talked about the options.. placing another central line, I said NO WAY too

this. A port a cath, he said no, but later he said he would keep the option

open. Going back to subQ, he doesn't want to do this because he feels that this

is not as effective and Nick's medical records show that going with the vein has

kicked out the infections more. So we are sticking we starting an IV each time

but he is sending a letter to his infusion nurse to do the papoose method with a

sheet. He said it may be 5 minutes of torture for Nick but it is better than 30

mins and 5 to 8 sticks and blown IV's of torture. The immuno wants to give it a

few more months and we will discuss the port in May if no improvements. I asked

when we were going to wean off IVIG and test his levels and he said he was going

to give him two more summers on IVIG. So at least that will give him until he is

almost 4.

On a good note. The immuno gave the go ahead to put him in preschool as soon as

he is potty trained. The only restrictions are no more than 6 to 8 kids and he

has to come home at the first signs of any viral bronchitis or flu and the staff

must notify us if anyone in the building has this type of illnesses too. He has

also lifted most of his isolation restrictions. He can now go around large

groups of people.

The immuno did have one last option that I didn't understand even after he

explained it twice. Our immuno is wonderful but is Japanese and his accent is

hard to understand. He said there was a reserviour that could be placed under

Nick's skin in his tummy like a pump? and accessed like subQ from there.. Does

anyone know what this is? He really didn't come back to it, just said it was

another option if the vein access didn't pan out.

Amy,

mom to , 2 years old, CVID, asthma, GERD, on prophalatic abx (rotating

Septra and Amoxicillin) and IVIG (Carimune NF) every 4 weeks, flovent, xopenex,

albuterol and claritin. Allergic to milk, soy and latex.. among other things.

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