weekly IVIG?

March 6, 2008

We've been on SCIG for almost 5 months and I have a rail thin kiddo (age 7)

who's only fat is on her tummy and were losing that too. Were also having

problems with infusions, something always goes wrong and only 1 side infuses.

Almost every time I pull the cath out (softset) at least 1 cath is bent at a 90

deg angle and didn't infuse and we can't figure that one out. Lots of problems

and now we have a new one that we discovered on the playground of all places.

When she was hanging from the monkey board her shirt came up and I noticed tumor

looking things popping out of her skin. I got a good look and they about 1 inch

long and 1/2 inch wide and feel like calcifications under the skin.There is no

way we could infuse in that area now with these. Has anyone seen this happen?

Will they dissolve? I feel like were running out of sites but doing monthly IVIG

was causing severe side effects, poor kid felt like she had the flu half the

month and complained of bone pain all month long. All of it stopped when we

switched to SCIG. I talked to Nufactor and they said weekly IVIG in smaller

doses is a possibility, anyone have any experience with it?

March 7, 2008

Hey !!

I hear your frustration.

Are you using Vivaglobin? We HAD to switch to Gammagard S/D because the VIV

was sooo hard on Blake & caused him several issues. He too has calcifications in

his tummy area. With the Gammagard S/D he does it 2'x a week. Every Tuesday &

every Sat. works greaat, no side effects & we don't even have to premedicate!!!!

See if they can switch to the brand you were getting through IV. It is true,

much lsee reactions than running through an IV & makes for one happy camper!!!!!

Good luck!!!

Mom to Blake 16: SCID With Complete T-Cell Dysfunction,

Asperger's(Autism)/ADHD/OCD/ODD, Severe Asthma & Severe GERD

RIght Now he is a Holy Tyrant!!!!

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

He IS the Greatest Adventure of MY Lifetime!!!!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

<taelon@...> wrote:

We've been on SCIG for almost 5 months and I have a rail thin kiddo

(age 7) who's only fat is on her tummy and were losing that too. Were also

having problems with infusions, something always goes wrong and only 1 side

infuses. Almost every time I pull the cath out (softset) at least 1 cath is bent

at a 90 deg angle and didn't infuse and we can't figure that one out. Lots of

problems and now we have a new one that we discovered on the playground of all

places. When she was hanging from the monkey board her shirt came up and I

noticed tumor looking things popping out of her skin. I got a good look and they

about 1 inch long and 1/2 inch wide and feel like calcifications under the

skin.There is no way we could infuse in that area now with these. Has anyone

seen this happen? Will they dissolve? I feel like were running out of sites but

doing monthly IVIG was causing severe side effects, poor kid felt like she had

the flu half the month and complained of bone pain all

month long. All of it stopped when we switched to SCIG. I talked to Nufactor

and they said weekly IVIG in smaller doses is a possibility, anyone have any

experience with it?

March 7, 2008

Hi ,

Yes, it is possible. However, the risk of side effects probably won't be any

less than they had been when you were infusing before. With that said,

gets his every 2 weeks (36g every 2 weeks via a port). We infuse the

smaller amount over the same amount of time as we did the bigger amount (4

hours)

and have stayed clear of most reactions. My daughter on the other hand does the

subq. But, even though she has lots of subcutaneous " fat " she still has

issues with leaking. But she prefers it. I know of several parents who use the

legs on their very skinny little ones in their sleep and they don't seem to

mind. If there is room to pinch, you should have enough fat to do an infusion.

You can also increase the number of sites, so as to reduce the bulk in any one

spot. We are now using 3 and may move to 4 (1 in each leg and one in belly).

We use shorter 6mm needles in the legs and a 9mm needle in the belly.

I wish I had more suggestions for you! You'll be in my prayers,

Mommy to:

Annette 17yo, selective antibody deficiency, cp, devlopmental delays, g-tube,

IVIG x 6 years, Sub Q IG x 3 yr now and LOVING it. Every bit a teenager (both

for the good and the bad ) LOL.

12yo, previous B and T cell deficiencies, IVIG x 1 year. Due to

intractable epilepsy he is on high dose IVIG via a port every 2 weeks. brain

tumor

survivor, hearing impaired, seizure disorder, learning disabled, and one heck

of a " WWE wrestler " !

Trayvon 9yo, Ivemark Syndrome, severe congenital heart defects, asplenia,

malrotated intestines, microcephalic, migraines, severe reflux and an

imagination

I can't keep up with for one minute!

Marriela 5yo, Micro premie (26 weeker, 1 lb, 12oz), NICU x 4 months, severe

asthma, devlopmental delays, mild cp, reflux, and gives us a serious run for

our money every single day!

and last but not least,

Cody 2.5y, a wonderfully happy and healthy baby with a neurogenic bladder and

bowel as well as some cruddy asthma.

God has a serious sense of humor now doesn't he! LOLOLOLOL

_www.caringbridge.com/ny/my2angels_

(http://www.caringbridge.com/ny/my2angels)

**************It's Tax Time! Get tips, forms, and advice on AOL Money &

Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001)

March 7, 2008

Were using Gamunex. I suspected maybe we've been using a defective lot of

needles/caths since we've been using the same lot since the beginning so I

had Nufactor send a new lot that arrived last night and we infused with it.

I was able to place the sets without any problems and no bent caths this

time although something else weird happened, one site wouldn't infuse and