Re: sub-q advice

February 11, 2008

Hi Betty,

We live in MA and used the CAT/CR in Boston for 6 years for IVIG before

switching to SCIG this past year. When the boys switched to SCIG, they had

their first one at the CAT/CR as well.

1. What should she bring to the appointment?

We would bring favorite items to keep the kids occupied. For the older boys it

was usually their Gameboys, for our little one, movies did the trick. They have

arts & crafts there, and also a movie library as well. 2. How long will it be

until she feels better if the treatment is going to work?

This was different for us with every child. Our oldest responded almost

immediately when he began therapy, and has done extremely well illness-wise.

Our middle son responded in a few months, but still has a serious break-though

infection about once a year. Our little one has had a harder time, and still

gets breakthrough sinus and ear infections during the fall and winter. It

really depends on the child and their clinical picture. Our youngest has the

lowest IgA, so that's a factor in his sinus issues.3. What advice do you wish

somebody had given you before you began the treatment?

First, use EMLA cream to numb the area before the sticks. It doesn't have to

hurt! We did not discover EMLA until after several rough experiences in the

beginning with our oldest. I now insist on it for every blood draw. They go

through enough!

Also, watch closely for reactions. Our oldest had severe reactions to his IVIG,

which is why we switched to SCIG. He had mild reactions for a long time before

it escalated last year and became intolerable. You can slow down the rate of

infusion if there are pain or side effects.4. What side effects have you had?

The first few times the side effects were the worst-- painful swelling -- not

incredibly swollen, but enough to be very uncomfortable. We found that a

heating pad helps with this. For our skinniest child, we added additional sites

to help with this-- he no longer complains of that. Also, headaches, mild

itching or redness at the sites, and irritability are common.

Hope that helps! Good Luck Friday! Mom to: Ben (8), (6),

(2): all with CVID on SCIG

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