a few questions about IVIG

[Guest guest]

I have a few questions for everyone.

1. How many do IVIG at home?

2. How many do IVIG every 2 weeks?

3. Of those that do it every 2 weeks, do you do it at home?

Our immunologist agreed to let us do IVIG at home (with 2 kids

inpatient for infusions, it's a little crazy!). When we come home, he

wants us to go to 400mg/kg every 2 weeks. I think I recall a few of

you doing that?

4. is having surgery next week. How many have done an extra

dose of IVIG before surgery? How was that calculated? We just did

IVIG on Tuesday, so 10 days before surgery. Is there a time period

where it would be too soon to do again? This was something he

recommended at our visit last week but that was before we knew when it

would be in relation to their most recent dose.

Thanks in advance for the info!

Mom to , 6 - GSD, CVID, central respiratory failure

Meredith, 3 - GSD, CVID, central respiratory failure

, 9 - healthy

Carmel, IN

www.caringbridge.org/visit/mhobbs

[Guest guest]

We do IVIG 15gm every two weeks. We have a home health nurse that comes

to our house. We have had the same nurse the entire time. We have

never received IVIG anywhere else. We have an epi pen here, and Ashton

is pretreated with Benedryl and Tylenol.

As far as prior to surgery, we just always scheduled surgery around her

infusion. I tired to set the surgery within a couple days of just

receiving treatment, so we kept with the same schedule.

She really likes the every two weeks, as she really starts to feel down

by the time the two weeks is coming close to an end. The three weeks

didn't work for her. She would be do down the third week. I know that

is why some to SCIG.

L

mom to Ashton 15 CVID, Asthma, Dyslexia & Marina 12 Asthma

[Guest guest]

Thanks ! We have been doing every 3 weeks but Meredith has been sick a

lot (not just week 3, though) and has also had an ear/sinus

infection which he doesn't typically get anymore with IVIG. Our new

immunologist upped the doses as well. I wasn't comfortable with SCIG

because of recurrent cellulitis issues in both kids so we've opted to stick

with IVIG. They both have ports so it's not that bad. We have been told we

will have a nurse here as well along with an epi pen.

We tried to schedule 's surgery for this week (IVIG week) but we have

so many specialists that have to be available that it ended up getting

postponed at the last minute. In the past, we have always had the liberty

to schedule with IVIG but now with the severe respiratory problems, it has

been more complicated to schedule. I did talk with the nurse at the

immunologist's office yesterday and she said they always recommend getting

another full dose. She is going to verify that on Monday and put it in

writing to the admitting doctor. I am kind of glad because he's having

work done on his g tube, a site that has been infected 7 times in the last

18 months and which all the doctors here fully expect will get infected

again when they open it back up. It is a necessary evil, though, because he

has so much scar tissue from the infections that the stoma is closing up and

when it gets changed out, the doctor could barely get it back in - had to

dilate with metal tools - it was an awful, painful experience for as

well as myself! And, doing all that caused it to get infected AGAIN!

I assume Ashton prefers IVIG at home? My kids are a little unsure. We try

to make the hospital fun and child life always gives them presents, so

they're wondering what's going to be fun about doing it at home. Anyone

have any suggestions here that won't make us go bankrupt? J

Mom to , 6 - GSD, CVID, central respiratory failure

Meredith, 3 - GSD, CVID, central respiratory failure

, 9 - healthy

Carmel, IN

www.caringbridge.org/visit/mhobbs

From: [mailto: ] On Behalf Of

Lloyd

Sent: Friday, October 24, 2008 9:35 PM

Subject: Re:a few questions about IVIG

We do IVIG 15gm every two weeks. We have a home health nurse that comes

to our house. We have had the same nurse the entire time. We have

never received IVIG anywhere else. We have an epi pen here, and Ashton

is pretreated with Benedryl and Tylenol.

As far as prior to surgery, we just always scheduled surgery around her

infusion. I tired to set the surgery within a couple days of just

receiving treatment, so we kept with the same schedule.

She really likes the every two weeks, as she really starts to feel down

by the time the two weeks is coming close to an end. The three weeks

didn't work for her. She would be do down the third week. I know that

is why some to SCIG.

L

mom to Ashton 15 CVID, Asthma, Dyslexia & Marina 12 Asthma

[Guest guest]

...

 

I know you know that we do 's IVIG at home. I know is a little older,

but I do let him pick dinner (either something special I make or something that

my husband brings home or pizza) and then he's gets to watch movies or play

video games.  Surprisingly thats all it took! Although maybe hitting the dollar

bin at Target etc might not be a bad idea the first time either!

He likes it at home, as he can sit with his shirt off ( he prefers that when his

port is accessed) hang out in the recliner or couch and is much more relaxed

than he has EVER been. His vitals have been so much more stable at home, I

believe its from less stress.

 

Even though the other 2kids are home with me (usually) while IVIG is being done,

I still am able to find time to just hang with him and play. I in turn am much

more relaxed as well. I do always have a back-up person around or available on

" stand-by " in case I need to (Heaven Forbid) take him to the ER for anything.

 

As you move forward with this, feel free to call or email me with any questions

that come up!

Missy

From: Hobbs <hobbsfamily@...>

Subject: RE: Re:a few questions about IVIG

Date: Saturday, October 25, 2008, 7:54 AM

Thanks ! We have been doing every 3 weeks but Meredith has been sick a

lot (not just week 3, though) and has also had an ear/sinus

infection which he doesn't typically get anymore with IVIG. Our new

immunologist upped the doses as well. I wasn't comfortable with SCIG

because of recurrent cellulitis issues in both kids so we've opted to stick

with IVIG. They both have ports so it's not that bad. We have been told we

will have a nurse here as well along with an epi pen.

We tried to schedule 's surgery for this week (IVIG week) but we have

so many specialists that have to be available that it ended up getting

postponed at the last minute. In the past, we have always had the liberty

to schedule with IVIG but now with the severe respiratory problems, it has

been more complicated to schedule. I did talk with the nurse at the

immunologist' s office yesterday and she said they always recommend getting

another full dose. She is going to verify that on Monday and put it in

writing to the admitting doctor. I am kind of glad because he's having

work done on his g tube, a site that has been infected 7 times in the last

18 months and which all the doctors here fully expect will get infected

again when they open it back up. It is a necessary evil, though, because he

has so much scar tissue from the infections that the stoma is closing up and

when it gets changed out, the doctor could barely get it back in - had to

dilate with metal tools - it was an awful, painful experience for as

well as myself! And, doing all that caused it to get infected AGAIN!

I assume Ashton prefers IVIG at home? My kids are a little unsure. We try

to make the hospital fun and child life always gives them presents, so

they're wondering what's going to be fun about doing it at home. Anyone

have any suggestions here that won't make us go bankrupt? J

Mom to , 6 - GSD, CVID, central respiratory failure

Meredith, 3 - GSD, CVID, central respiratory failure

, 9 - healthy

Carmel, IN

www.caringbridge. org/visit/ mhobbs

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

Lloyd

Sent: Friday, October 24, 2008 9:35 PM

groups (DOT) com

Subject: Re:a few questions about IVIG

We do IVIG 15gm every two weeks. We have a home health nurse that comes

to our house. We have had the same nurse the entire time. We have

never received IVIG anywhere else. We have an epi pen here, and Ashton

is pretreated with Benedryl and Tylenol.

As far as prior to surgery, we just always scheduled surgery around her

infusion. I tired to set the surgery within a couple days of just

receiving treatment, so we kept with the same schedule.

She really likes the every two weeks, as she really starts to feel down

by the time the two weeks is coming close to an end. The three weeks

didn't work for her. She would be do down the third week. I know that

is why some to SCIG.

L

mom to Ashton 15 CVID, Asthma, Dyslexia & Marina 12 Asthma

[Guest guest]

,

We love doing the treatments at home. If Ashton is done her

schoolwork, she gets to do crafts she likes. Most of the time she is

too tired to work on school, the benedryl makes her tired. The nurse

works with her on her crafts some, or they watch a movie. I try to

record something she wants to watch and save it for that time. We

homeschool, so we have some flexibility with things. She is also much

older than your children. She started treatments 4 years ago. It

doesn't seem so long ago.

Ashton still gets sick, and this summer she was sick for over a month.

Most things she has been able to clear, but this summer was tough. I

hear her coughing some now, and am hoping it is with the change of

season. It seems there are some nasty bugs going around right now.

Ashton has a port too. It has been great for her. She is set

against SCIG at this time. The setup we have now is working great for

her. She is so skinny and muscular, I don't know if SCIG would be a

good option at this point. Ashton had lots of scar tissue when they

took out her old port and put in a new one. She had more pain this

time. It took the dr much longer to put the new one it. I was starting

to worry.

Make sure your nurse follows protocol with the ports. We have never

had an infection, and the nurse is very careful.

If you can hit the dollar store, or the craft store has little

things, you can keep them busy. I find coupons online for the craft

store, and save up on things she likes to do.

Hopefully you get a nurse as wonderful as ours is.

L

mom to Ashton 15 CVID, Asthma, Dyslexia & Marina 12 Asthma

[Guest guest]

When my son Lucas started IVIg at age 3 we began " King of the Day " For us it was

simple. He could have anything he wanted to eat that one day. He could buy one

gift up $5 in the beginning and we rented a movie( or borrowed one) . We never

had trouble getting him to go since it was HIS day and he knew it.

BARBIE

________________________________

From: Hobbs <hobbsfamily@...>

Sent: Saturday, October 25, 2008 7:54:07 AM

Subject: RE: Re:a few questions about IVIG

Thanks ! We have been doing every 3 weeks but Meredith has been sick a

lot (not just week 3, though) and has also had an ear/sinus

infection which he doesn't typically get anymore with IVIG. Our new

immunologist upped the doses as well. I wasn't comfortable with SCIG

because of recurrent cellulitis issues in both kids so we've opted to stick

with IVIG. They both have ports so it's not that bad. We have been told we

will have a nurse here as well along with an epi pen.

We tried to schedule 's surgery for this week (IVIG week) but we have

so many specialists that have to be available that it ended up getting

postponed at the last minute. In the past, we have always had the liberty

to schedule with IVIG but now with the severe respiratory problems, it has

been more complicated to schedule. I did talk with the nurse at the

immunologist' s office yesterday and she said they always recommend getting

another full dose. She is going to verify that on Monday and put it in

writing to the admitting doctor. I am kind of glad because he's having

work done on his g tube, a site that has been infected 7 times in the last

18 months and which all the doctors here fully expect will get infected

again when they open it back up. It is a necessary evil, though, because he

has so much scar tissue from the infections that the stoma is closing up and

when it gets changed out, the doctor could barely get it back in - had to

dilate with metal tools - it was an awful, painful experience for as

well as myself! And, doing all that caused it to get infected AGAIN!

I assume Ashton prefers IVIG at home? My kids are a little unsure. We try

to make the hospital fun and child life always gives them presents, so

they're wondering what's going to be fun about doing it at home. Anyone

have any suggestions here that won't make us go bankrupt? J

Mom to , 6 - GSD, CVID, central respiratory failure

Meredith, 3 - GSD, CVID, central respiratory failure

, 9 - healthy

Carmel, IN

www.caringbridge. org/visit/ mhobbs

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

Lloyd

Sent: Friday, October 24, 2008 9:35 PM

groups (DOT) com

Subject: Re:a few questions about IVIG

We do IVIG 15gm every two weeks. We have a home health nurse that comes

to our house. We have had the same nurse the entire time. We have

never received IVIG anywhere else. We have an epi pen here, and Ashton

is pretreated with Benedryl and Tylenol.

As far as prior to surgery, we just always scheduled surgery around her

infusion. I tired to set the surgery within a couple days of just

receiving treatment, so we kept with the same schedule.

She really likes the every two weeks, as she really starts to feel down

by the time the two weeks is coming close to an end. The three weeks

didn't work for her. She would be do down the third week. I know that

is why some to SCIG.

L

mom to Ashton 15 CVID, Asthma, Dyslexia & Marina 12 Asthma

[Guest guest]

Not a bad idea, but we are talking about doing this at home with 2 kids, so

even a $5 toy every 2 weeks for 2 kids plus I have an older girl (age 9)

that would feel left out. The hospital always provided a toy from the

treasure chest so it wasn't costing me anything to get their " presents "

before. has been doing IVIG for 3 years and Meredith for 1 year.

The IVIG part isn't new, just the doing it at home part. It would be hard

for them to both pick out everything for a day on the same day!

From: [mailto: ] On Behalf Of

Barbara Jimenez

Sent: Saturday, October 25, 2008 4:44 PM

Subject: Re: Re:a few questions about IVIG

When my son Lucas started IVIg at age 3 we began " King of the Day " For us it

was simple. He could have anything he wanted to eat that one day. He could

buy one gift up $5 in the beginning and we rented a movie( or borrowed one)

.. We never had trouble getting him to go since it was HIS day and he knew

it.

BARBIE

[Guest guest]

Please help raise money for Primary Immune Disease by doing your online shopping

through this link (it's FREE to you!) There are 680+ stores that participate!

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From: Hobbs <hobbsfamily@...>

Subject: RE: Re:a few questions about IVIG

Date: Saturday, October 25, 2008, 5:36 PM

Not a bad idea, but we are talking about doing this at home with 2 kids, so

even a $5 toy every 2 weeks for 2 kids plus I have an older girl (age 9)

that would feel left out. The hospital always provided a toy from the

treasure chest so it wasn't costing me anything to get their " presents "

before. has been doing IVIG for 3 years and Meredith for 1 year.

The IVIG part isn't new, just the doing it at home part. It would be hard

for them to both pick out everything for a day on the same day!

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

Barbara Jimenez

Sent: Saturday, October 25, 2008 4:44 PM

groups (DOT) com

Subject: Re: Re:a few questions about IVIG

When my son Lucas started IVIg at age 3 we began " King of the Day " For us it

was simple. He could have anything he wanted to eat that one day. He could

buy one gift up $5 in the beginning and we rented a movie( or borrowed one)

... We never had trouble getting him to go since it was HIS day and he knew

it.

BARBIE

[Guest guest]

>

> I have a few questions for everyone.

>

> 1. How many do IVIG at home?

> 2. How many do IVIG every 2 weeks?

> 3. Of those that do it every 2 weeks, do you do it at home?

>

> Our immunologist agreed to let us do IVIG at home (with 2 kids

> inpatient for infusions, it's a little crazy!). When we come home,

he

> wants us to go to 400mg/kg every 2 weeks. I think I recall a few of

> you doing that?

>

> 4. is having surgery next week. How many have done an

extra

> dose of IVIG before surgery? How was that calculated? We just did

> IVIG on Tuesday, so 10 days before surgery. Is there a time period

> where it would be too soon to do again? This was something he

> recommended at our visit last week but that was before we knew when

it

> would be in relation to their most recent dose.

>

> Thanks in advance for the info!

>

> Mom to , 6 - GSD, CVID, central respiratory failure

> Meredith, 3 - GSD, CVID, central respiratory failure

> , 9 - healthy

> Carmel, IN

> www.caringbridge.org/visit/mhobbs

>