Re: How is the subcu going?

September 20, 2004

Riley,

I am not sure you saw my post concerning s experience with Sub Q. is

14 and has been doing competitve gymnastics for 5 years. Its his " pain meds "

he feels the best when he is doing gymnastics.

Anyways from my post below you will see that it did not work for us because of

s lack of body fat. He went back on IVIG yesterday and it went

fabulous.....

le

Here is the post I sent:

Hi,

I wanted to share our experience with everyone concerning Sub Q. In my last

post I shared we were waiting for authorization from our insurance company.

Well all went smoothly and the company we were using for Sub Q was great.

However, had his first Suq Q a week ago and his last Sub Q yesterday.

What we found out in the process was there is great success in Sub Q if your

child has fatty tissue. In 's case he is a competitive gymnast and has

competed for the last 5 years. He works out 5 days a week for three hours a

day, needless to say he is in fantastic shape. Little to none body fat.

The first infusion went well. We had a nurse come to our home. She commented

on his lack of " fat " . The sites were sore but nothing couldn't tolerate.

Done in an hour and a half. The nurse also commented on usually you will see a

slight raised area around the site where the meds went in..........in 's

case there was no indication that he had any thing done, except for the tiny

needle mark. 's only comment was that it was sore during the whole infusion

otherwise it was fine.

The 2 nd week was harder. He experienced severe pain in one of the sites. The

company was great in talking us through it on the phone and were able to get

relief.......we pulled the site out.............again at each site there

was no sign of a raised area similar to a TB test.

We talked in great length today with the nurse and doctor concerning Sub Q and

they believe the meds were going into the muscle thus causing the pain. They

also said that is not a good candidate for Sub Q due to his lack of body

fat. was relieved and will go back to IVIG. He was not having a problem

with IVIG, veins are great, he just didn't want to miss school.

I know sub q is working very well for some, but in our case is not a good

candidate. Maybe some time in the future.

le Penne

14

September 20, 2004

There is a

learning curve and I have learned a couple of things, but no major

catastrophes. YOu do get a good size lump at each site, and for some kids

that might mean taking some pain reliever. Calvin has done fine without

it and the lump is usually not noticeable by nighttime.

Hi ,

This is what was strange for us because never had a " lump " in the 2 sub q

treatments each in 4 sites there was never an indication that it was done except

the small needle hole. Thats when we were told that it would not work for

because the meds were going into his muscle..........he did not have the body

fat needed.

Something to think about when looking at Sub Q.

le

September 23, 2004

In a message dated 9/20/2004 11:21:44 AM Eastern Daylight Time,

amyjo4181@... writes:

Nick goes every other week and gets 3 grams of Carimune NF.

I see Nick is on carimune, is he IGA def.?

Janet, mom to Brittany, CVID, age 13

September 23, 2004

No.. Nick has low normal IgA.

Amy, mom to:

, 21 months old. CVID, MSPI, GERD, Asthma.. On claritin, flovent,