RE: Re: Thanks to all who helped with the SubQ question

[Guest guest]

Macey takes 75 mls into 2 sites (so 37.5 into each). She does this per

order of her immuno.

Ursula - mom to Macey (10,CVID) and (13)

http://members.cox.net/maceyh

Immune Deficiency Foundation http://www.primaryimmune.org

Pediatric PID email list

Modell Foundation http://jmfworld.org

[Guest guest]

" Macey takes 75 mls into 2 sites "

Ursula -

Do you notice any stubborn lumps or knots with that volume? We were using 2

sites and now use 3 sites for ~ 35 cc -- and are still working on ways to reduce

her knots. We just started massaging the sites to see if that helps. Another

mom in our group is dealing with the same issue and I think she will be

experimenting with another brand.

This is a rather benign issue but I would like to avoid the knots, if

possible.

mom to Dani CVID

[Guest guest]

Macey has some raised mounds but we tend to infuse about 7 pm to 9 pm. We

do a very slow infusion (~35 cc's per hour). She is in bed and settled for

the night when the infusion is done. She gets up, takes the needles out and

puts bandaids on. Next thing I know in the morning before school her

stomach is flat again.

It might help to slow the rate of the pump, changing products might help

with redness at the site but I don't think any product is any bulkier than

another.

Ursula - mom to Macey (10,CVID) and (13)

http://members.cox.net/maceyh

Immune Deficiency Foundation http://www.primaryimmune.org

Pediatric PID email list

Modell Foundation http://jmfworld.org

[Guest guest]

In a message dated 4/11/2006 3:05:53 P.M. Eastern Standard Time,

writes:

Do you notice any stubborn lumps or knots with that volume? We were using 2

sites and now use 3 sites for ~ 35 cc -- and are still working on ways to

reduce her knots. We just started massaging the sites to see if that helps.

Another mom in our group is dealing with the same issue and I think she will

be experimenting with another brand.

Nettie gets lumps at the site of infusion as well (using 2 sites for 25 ml

twice weekly - 3.75g Beygam). We find that walking around DURING the infusion

is one of the key methods of reducing her swelling. I assume this is due to

moving the fluid deeper into the tissue as it goes, thus less swelling. In

addition, we use heat packs and then take a hot bath after each infusion.

This really helps relax any tension and thus also allowing the fluid to move

along quicker. She typically infuses during school (has a full time nurse, so

this is easy) and has no remaining knots or lumps the next morning. We use

the upper thighs because she leaked badly in the tummy even when we tried

lying flat, taping securely, slowing the rate, etc.. I took all these

suggestions from this site because Nettie is the very first one at our hospital

to do

Sub Q!!!! LOL Thanks for all the advice!

Take Care and God Bless,

Mommy to:

Annette 16 yo, selective antibody deficiency, cp, devlopmental delays,

g-tube, IVIG x 5 years, Sub Q 2x weekly for over a year and LOVES it. Every bit

a

teenager, both good and bad. . .

10yo, previous B and T cell deficiencies, IVIG x 1 year (off now over

2 years), daily prophylaxis, brain tumor survivor, hearing impaired, seizure

disorder, learning disabled, and one heck of a " WWF wrestler " !

Trayvon 7yo, Ivemark Syndrome, severe congenital heart defects, asplenia,

malrotated intestines, microcephalic, migraines, severe reflux and losing teeth

by the day!

Marriela 3yo, 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, yet to be named,

Cody 6months, chronic congestion, severe reflux, waiting for our appointment

with the immunologist. And a wonderfully happy baby!

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

_www.caringbridge.com/ny/my2angels_

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

[Guest guest]

PS-- I also wanted to mention that had a site start leaking, so we

shut it down pretty early in the infusion. The rest of the infusion went

into the one non-leaking site. If I had to guess, he got more than 15ml on

the other site--- it was larger than " normal " but was gone (as his other

goose egg I mentioned earlier was) by the afternoon.

~Pattie~

" What matters is not great deeds, but great love. " ~ St. Therese of Lisieux

Family website: www.shwachman.50megs.com

_____

We use a Gammagard reconstituted to 10% solution of IG. My son gets

2.5g in 25(really 28)mls. Our home nurse said that we could put up to

20 mls into each site. This was what we were told when Calvin was 3.5

years old-----I do not know if this number increases with the age or

size of the child. Someone else can elaborate on that. We use only two

sites(we have a " Y " ) for the whole 28 mls, so that is roughly 15ml per

site.

One time we were travelling away from home and my extra supplies were

limited. After beginning the infusion, I had some technical difficulty

with my lines that I very methodically but unsuccessfully tried to

solve. In the end, on the advice of my phone nurse, I clamped off on

line and ran about 24 mls into a single site very slowly.

Assuming that you could put in up to 20mls per site, then 3 or 4

should do it. 8 seems like a lot to me.

I am all for eliminating unnecessary sticks and pokes, so I thought I

would share my experience.

Fisher

mom of Calvin, 5yo, XLA

_____

[Guest guest]

Another thing I wanted to say-which apparently is a misconception of the

immuno we see--- when I told this guy we were considering going to SubQ

(note: our hem orders the IG) his first reaction was that Sub Q was SOOOOO

painful. Later I found out it was because he had seen/known people who

were getting high volumes into one site. I never asked him what the

volumes were.. but I think from our discussion here we can see that people

can tolerate quite a bit! So I was thinking.MAYBE Martha's daughter's

immuno is like our immuno thinking that it is painful if you don't have

enough sites? I think it is great we have a board where we can come for

info and experience!

~Pattie~

" What matters is not great deeds, but great love. " ~ St. Therese of Lisieux

Family website: www.shwachman.50megs.com

_____

From: [mailto: ] On Behalf Of

Schulman

Sent: Monday, April 10, 2006 8:37 PM

Subject: RE: Re: Thanks to all who helped with the SubQ question

" Macey takes 75 mls into 2 sites "

Ursula -

Do you notice any stubborn lumps or knots with that volume? We were using

2 sites and now use 3 sites for ~ 35 cc -- and are still working on ways to

reduce her knots. We just started massaging the sites to see if that helps.

Another mom in our group is dealing with the same issue and I think she will

be experimenting with another brand.

This is a rather benign issue but I would like to avoid the knots, if

possible.

mom to Dani CVID

[Guest guest]

Hi Pattie,

What size needle set are you using on ? I am just asking as Chelsea was

having a leaking issue in her sites as well and we were using a 6mm needle.

About 4 weeks ago we switched to a 9mm (3 set) and NO MORE LEAKING as well as no

more large bumps. These 9mm neeles also are easier for me to remove too. I am

not sure why that is I am just greatful....

Have a Great Day :-)

Marlo

Independent Jewelry Consultant

Cookie Lee

818-425-7847

805-584-8251 (fax)

RE: Re: Thanks to all who helped with the SubQ question

PS-- I also wanted to mention that had a site start leaking, so we

shut it down pretty early in the infusion. The rest of the infusion went

into the one non-leaking site. If I had to guess, he got more than 15ml on

the other site--- it was larger than " normal " but was gone (as his other

goose egg I mentioned earlier was) by the afternoon.

~Pattie~

" What matters is not great deeds, but great love. " ~ St. Therese of Lisieux

Family website: www.shwachman.50megs.com

_____

We use a Gammagard reconstituted to 10% solution of IG. My son gets

2.5g in 25(really 28)mls. Our home nurse said that we could put up to

20 mls into each site. This was what we were told when Calvin was 3.5

years old-----I do not know if this number increases with the age or

size of the child. Someone else can elaborate on that. We use only two

sites(we have a " Y " ) for the whole 28 mls, so that is roughly 15ml per

site.

One time we were travelling away from home and my extra supplies were

limited. After beginning the infusion, I had some technical difficulty

with my lines that I very methodically but unsuccessfully tried to

solve. In the end, on the advice of my phone nurse, I clamped off on

line and ran about 24 mls into a single site very slowly.

Assuming that you could put in up to 20mls per site, then 3 or 4

should do it. 8 seems like a lot to me.

I am all for eliminating unnecessary sticks and pokes, so I thought I

would share my experience.

Fisher

mom of Calvin, 5yo, XLA

_____

[Guest guest]

We were using larger needles (not sure what mm) and have switched to the 6mm

needles. So far the 6mm needles worked just fine. The odd thing is that

the 6mm needles made by the same company seem to have more adhesive-and that

is helpful for those skinny minny kids! We are also using skin prep on

to help with it staying put. Since he is so skinny, each movement seems to

move the catheter more, if that makes sense. With a chunkier kid (ph is

solid-but has more to work with fat-wise) when they bend, stretch and walk

around, there isn't the bowing and flexing of the catheter.. It stays put

b/c of the extra fat/meat on the bones. is also allergic to non-band

aid brand band aids. Skin pre helps with that. I buy band aid brand, but

when we run out will use the others. ph is allergic to the other

adhesives, as well. Not that you wanted to know that..the conversation was

just flowing to my keyboard...

~Pattie~

" What matters is not great deeds, but great love. " ~ St. Therese of Lisieux

Family website: www.shwachman.50megs.com

_____

From: [mailto: ] On Behalf Of

MarloDarr@...

Sent: Wednesday, April 12, 2006 10:03 AM

Subject: Re: Re: Thanks to all who helped with the SubQ question

Hi Pattie,

What size needle set are you using on ? I am just asking as Chelsea was

having a leaking issue in her sites as well and we were using a 6mm needle.

About 4 weeks ago we switched to a 9mm (3 set) and NO MORE LEAKING as well

as no more large bumps. These 9mm neeles also are easier for me to remove

too. I am not sure why that is I am just greatful....

Have a Great Day :-)

_____

[Guest guest]

I compleatly understand as Chelsea is alerdic to adhesive tape. We were using

Hypafix for the last 8 years or so and unfortunately since we went to SubQ last

December, the Hypafix just gets to sticky when I use adhesive tape remover and

then I get stuck to everything and that is where I have a problem removing the

needles. So we have tried to use the tegaderm again and although Chelsea welts

for about an hour after removing the needles it is much better than me risking

nicking her when I mess with the sticky stuff.

Marlo

Independent Jewelry Consultant

Cookie Lee

818-425-7847

805-584-8251 (fax)

Re: Re: Thanks to all who helped with the SubQ question

Hi Pattie,

What size needle set are you using on ? I am just asking as Chelsea was

having a leaking issue in her sites as well and we were using a 6mm needle.

About 4 weeks ago we switched to a 9mm (3 set) and NO MORE LEAKING as well

as no more large bumps. These 9mm neeles also are easier for me to remove

too. I am not sure why that is I am just greatful....

Have a Great Day :-)

_____

[Guest guest]

They have talked to me about the tape (Hypafix) and I have been leery about

it b/c I figured it would be crazy trying to get everything in place and

using tape. ph seems fine with tegaderm & we used that. But then we

had all of the adhesive that goes with the sets we were wasting. AND he is

allergic to band aids.. Let me clarify that with band aid brand he doesn't

have an immediate reaction like with others (even left on a few minutes he

reacts) we can leave band aid brand on for up to 30 minutes with only a

slight reaction. Others it is like he gets a chemical burn-bright red.blood

red and then it scabs over. He finally stopped using band aids for his

allergy shots because of this. he would have the scabs for months. and

then the scars..

~Pattie~

" What matters is not great deeds, but great love. " ~ St. Therese of Lisieux

Family website: www.shwachman.50megs.com

_____

From: [mailto: ] On Behalf Of

MarloDarr@...

Sent: Wednesday, April 12, 2006 10:35 AM

Subject: Re: Re: Thanks to all who helped with the SubQ question

I compleatly understand as Chelsea is alerdic to adhesive tape. We were

using Hypafix for the last 8 years or so and unfortunately since we went to

SubQ last December, the Hypafix just gets to sticky when I use adhesive

tape remover and then I get stuck to everything and that is where I have a

problem removing the needles. So we have tried to use the tegaderm again

and although Chelsea welts for about an hour after removing the needles it

is much better than me risking nicking her when I mess with the sticky

stuff.

Marlo

Independent Jewelry Consultant

Cookie Lee

818-425-7847

805-584-8251 (fax)

_____

[Guest guest]

The recommendation from our company was max of 15 ml per site....but

slowing the rate down may help with the " lumps " as it will allow for

better absorption...Also encourage activity, etc which helps

absorption...

We haven't seen any with ...I infuse 20 ml in two site over 2-3

hours.

Hope that helps.

RE: Re: Thanks to all who helped with the SubQ

question

" Macey takes 75 mls into 2 sites "

Ursula -

Do you notice any stubborn lumps or knots with that volume? We were

using 2 sites and now use 3 sites for ~ 35 cc -- and are still working

on ways to reduce her knots. We just started massaging the sites to see

if that helps. Another mom in our group is dealing with the same issue

and I think she will be experimenting with another brand.

This is a rather benign issue but I would like to avoid the knots, if

possible.

mom to Dani CVID