Re: Contraindications for SCIQ?

[Guest guest]

,

Contact the IDF and ask this question to the medical panel...Kim Duff is on that

and she has done lots of research in terms of SCIG. That may be a good

resource.

does have neutropenia issues as well...ANC is around 1200 alot...we

haven't had cellulitis issues....

Hope that helps.

Contraindications for SCIQ?

I posted last week about the potential for us switching from IVIG to

SCIG. I know that there are a lot of people on this list that use

SCIQ and that may also have neutropenia and/or problems with recurrent

cellulitis. Both of our kids have chronic neutropenia and recurrent

cellulitis. Is that a contraindication to using SCIG? I remember

reading that a potential side effect of SCIG can be cellulitis and I

don't want to provide an environment that would make that more likely

if it truly is a risk factor.

Thanks!

Mom to (5) and Meredith (3) both with GSD, low IgG, chronic

neutropenia, low NK cells

and (8) healthy

www.caringbridge.org/visit/mhobbs

[Guest guest]

Thanks . I will give them a call. ’s ANC is between 550-700

and Meredith’s is between 500-900 for the last few months. Maybe that’s why

we’ve had more cellulitis problems. They have both had it 7 times in a 7

month period. hasn’t had it in 4 months but he spent 8 weeks on IV

antibiotics for his last one. Meredith had it again right before Christmas

and has also spent 4 weeks on IV antibiotics for it. Very frustrating! We

have been told that they need to start Neupogen but we are waiting to see

Dr. F next week.

www.caringbridge.com/visit/mhobbs

_____

From: [mailto: ] On Behalf Of

Schatz

Sent: Tuesday, January 01, 2008 11:04 AM

Subject: Re: Contraindications for SCIQ?

,

Contact the IDF and ask this question to the medical panel...Kim Duff is on

that and she has done lots of research in terms of SCIG. That may be a good

resource.

does have neutropenia issues as well...ANC is around 1200 alot...we

haven't had cellulitis issues....

Hope that helps.

Contraindications for SCIQ?

I posted last week about the potential for us switching from IVIG to

SCIG. I know that there are a lot of people on this list that use

SCIQ and that may also have neutropenia and/or problems with recurrent

cellulitis. Both of our kids have chronic neutropenia and recurrent

cellulitis. Is that a contraindication to using SCIG? I remember

reading that a potential side effect of SCIG can be cellulitis and I

don't want to provide an environment that would make that more likely

if it truly is a risk factor.

Thanks!

Mom to (5) and Meredith (3) both with GSD, low IgG, chronic

neutropenia, low NK cells

and (8) healthy

www.caringbridge.org/visit/mhobbs

[Guest guest]

,

I don't know the answer to your question but I wanted to mention a couple of

things...

There are very few children that have your kiddo's diagnosis and ever fewer that

have both the dx and are on sq. So, your really looking at teeny numbers to

determine whether or not it is safe to use sq on them. It's hard to imagine

that the studies (if they were even done) had enough participants to conclude

anything at all. Ultimately, this may be one of those situations where you'll

have to make a the best decision possible with your doctor. (Kim Duff is a good

contact as well.)

If ya'll choose to try sq, obviously, you will need to take extra precautions

such as (1) go super, super slow and (2) use the product that they are already

tolerating (not all products are created equal). *If* you try it, I'd suggest

that you ask for a pump that allows you to control the flow rate (e.g.,

electronic v. syringe style). If the flow is too fast, there is a good chance

that the skin will get irritated--which you'll want to avoid.

Last year, one of the moms in our group had problems with cellulitis and sq.

She might weight in. However, her was getting a 16% solution (if I remember

correctly), which alone may cause more irritation than a 10% solution--for those

with sensitive skin.

There are a few kids who have mitochondrial conditions and have skin issues--and

the sq did not cause further skin problems. I realize that is not a good

comparison group, though. Just thinking out loud here...

Please let me know what your docs say about this. I'd like to know if they

think it's contraindicated or not--or it depends. : )

mom to Dani, CVID+

[Guest guest]

and all,

Thanks for the info. How do I contact Kim Duff? I've spoken with Kathy

Antilla at IDF but don't know how to reach others. I did call the Gamunex

person you recommended and he was very helpful. It sounds like our best

option at this point may be to do IVIG at home once we move. We will still

discuss SCIG with Dr. Filopovich as another option but the cellulitis

concerns me. I don't want to mess with what's been working ( at

least, Meredith is still getting cellulitis).

Thanks!

Mom to , 5 GSD, PIDD

Meredith, 2 GSD, PIDD

, 8 healthy

Huntsville, AL

www.caringbridge.com/visit/mhobbs

_____

From: [mailto: ] On Behalf Of

Schulman

Sent: Wednesday, January 02, 2008 2:04 PM

Subject: Re: Contraindications for SCIQ?

,

I don't know the answer to your question but I wanted to mention a couple of

things...

There are very few children that have your kiddo's diagnosis and ever fewer

that have both the dx and are on sq. So, your really looking at teeny

numbers to determine whether or not it is safe to use sq on them. It's hard

to imagine that the studies (if they were even done) had enough participants

to conclude anything at all. Ultimately, this may be one of those situations

where you'll have to make a the best decision possible with your doctor.

(Kim Duff is a good contact as well.)

If ya'll choose to try sq, obviously, you will need to take extra

precautions such as (1) go super, super slow and (2) use the product that

they are already tolerating (not all products are created equal). *If* you

try it, I'd suggest that you ask for a pump that allows you to control the

flow rate (e.g., electronic v. syringe style). If the flow is too fast,

there is a good chance that the skin will get irritated--which you'll want

to avoid.

Last year, one of the moms in our group had problems with cellulitis and sq.

She might weight in. However, her was getting a 16% solution (if I remember

correctly), which alone may cause more irritation than a 10% solution--for

those with sensitive skin.

There are a few kids who have mitochondrial conditions and have skin

issues--and the sq did not cause further skin problems. I realize that is

not a good comparison group, though. Just thinking out loud here...

Please let me know what your docs say about this. I'd like to know if they

think it's contraindicated or not--or it depends. : )

mom to Dani, CVID+

[Guest guest]

Kim should be available through the IDF. Try them....

If not you could try NuFactor and they may have her current phone number. I

believe she is back working in Ohio.

Re: Contraindications for SCIQ?

,

I don't know the answer to your question but I wanted to mention a couple of

things...

There are very few children that have your kiddo's diagnosis and ever fewer

that have both the dx and are on sq. So, your really looking at teeny

numbers to determine whether or not it is safe to use sq on them. It's hard

to imagine that the studies (if they were even done) had enough participants

to conclude anything at all. Ultimately, this may be one of those situations

where you'll have to make a the best decision possible with your doctor.

(Kim Duff is a good contact as well.)

If ya'll choose to try sq, obviously, you will need to take extra

precautions such as (1) go super, super slow and (2) use the product that

they are already tolerating (not all products are created equal). *If* you

try it, I'd suggest that you ask for a pump that allows you to control the

flow rate (e.g., electronic v. syringe style). If the flow is too fast,

there is a good chance that the skin will get irritated--which you'll want

to avoid.

Last year, one of the moms in our group had problems with cellulitis and sq.

She might weight in. However, her was getting a 16% solution (if I remember

correctly), which alone may cause more irritation than a 10% solution--for

those with sensitive skin.

There are a few kids who have mitochondrial conditions and have skin

issues--and the sq did not cause further skin problems. I realize that is

not a good comparison group, though. Just thinking out loud here...

Please let me know what your docs say about this. I'd like to know if they

think it's contraindicated or not--or it depends. : )

mom to Dani, CVID+

[Guest guest]

Kim should be available through the IDF. Try them....

If not you could try NuFactor and they may have her current phone number. I

believe she is back working in Ohio.

Re: Contraindications for SCIQ?

,

I don't know the answer to your question but I wanted to mention a couple of

things...

There are very few children that have your kiddo's diagnosis and ever fewer

that have both the dx and are on sq. So, your really looking at teeny

numbers to determine whether or not it is safe to use sq on them. It's hard

to imagine that the studies (if they were even done) had enough participants

to conclude anything at all. Ultimately, this may be one of those situations

where you'll have to make a the best decision possible with your doctor.

(Kim Duff is a good contact as well.)

If ya'll choose to try sq, obviously, you will need to take extra

precautions such as (1) go super, super slow and (2) use the product that

they are already tolerating (not all products are created equal). *If* you

try it, I'd suggest that you ask for a pump that allows you to control the

flow rate (e.g., electronic v. syringe style). If the flow is too fast,

there is a good chance that the skin will get irritated--which you'll want

to avoid.

Last year, one of the moms in our group had problems with cellulitis and sq.

She might weight in. However, her was getting a 16% solution (if I remember

correctly), which alone may cause more irritation than a 10% solution--for

those with sensitive skin.

There are a few kids who have mitochondrial conditions and have skin

issues--and the sq did not cause further skin problems. I realize that is

not a good comparison group, though. Just thinking out loud here...

Please let me know what your docs say about this. I'd like to know if they

think it's contraindicated or not--or it depends. : )

mom to Dani, CVID+

[Guest guest]

,

You might want to try Rainbow Babies in Ohio. Sorry, I don't have Kim Duff's

direct number. Dr. Berger's (they work together) dept. number is: 261-844-3237.

Best wishes,