RE: life after 1st ivig...

[Guest guest]

Liz, so happy he's better...the IVIG is wonderful, he needed it! Hugs! sue

From: Liz Pence <pencesiding@...>

Subject: life after 1st ivig...

Date: Wednesday, January 18, 2012, 1:26 AM

 

Wanted to give a little update. My 4 yo had his 1st ivig on dec 1. He was

sick that day (no suprise there, he had a new or continuing infection every 2

weeks all of 2011). Within days of the infusion he was better no antibiotics

needed. He didnt get sick for the whole month even though we went on vacation

and 2 disney. He was starting to get sick right before the second infusion but

is well now (thank you ivig!)

No reactions for the 1st infusion some reactions @hospital the 2nd time. Super

high heart rate, itchie throat and wheezing. They went twice as fast though and

i think that was the prob. The wheezing wasnt as bad as it seems because he's a

wheezer anyway and has been flaring. No other side effects later at home though!

Anyway, when one of the moms said to get ready our lives were about to change

she was not kidding! Ivig is the very best thing that has happened to us in

forever. It's crazy to see him well, playing, eating, you know being a kid! He

even gained weight!

Thanks for all your help and support since this started. We still have

somethings to figure out, but I'm not panicked about the immediate future

anymore! This was the!1st January of his 4 yo life he wasn't in the hospital

with pneumonia!

Liz

[Guest guest]

Liz, so happy he's better...the IVIG is wonderful, he needed it! Hugs! sue

From: Liz Pence <pencesiding@...>

Subject: life after 1st ivig...

Date: Wednesday, January 18, 2012, 1:26 AM

 

Wanted to give a little update. My 4 yo had his 1st ivig on dec 1. He was

sick that day (no suprise there, he had a new or continuing infection every 2

weeks all of 2011). Within days of the infusion he was better no antibiotics

needed. He didnt get sick for the whole month even though we went on vacation

and 2 disney. He was starting to get sick right before the second infusion but

is well now (thank you ivig!)

No reactions for the 1st infusion some reactions @hospital the 2nd time. Super

high heart rate, itchie throat and wheezing. They went twice as fast though and

i think that was the prob. The wheezing wasnt as bad as it seems because he's a

wheezer anyway and has been flaring. No other side effects later at home though!

Anyway, when one of the moms said to get ready our lives were about to change

she was not kidding! Ivig is the very best thing that has happened to us in

forever. It's crazy to see him well, playing, eating, you know being a kid! He

even gained weight!

Thanks for all your help and support since this started. We still have

somethings to figure out, but I'm not panicked about the immediate future

anymore! This was the!1st January of his 4 yo life he wasn't in the hospital

with pneumonia!

Liz

[Guest guest]

Ivig has been a godsend for us too. I am so nervous for our check up and

that the dr may discontinue treatment ...

On Jan 17, 2012 11:00 PM, " Sue Bordelon " <sudubo@...> wrote:

>

>

>

> Liz, so happy he's better...the IVIG is wonderful, he needed it! Hugs! sue

>

>

>

> From: Liz Pence <pencesiding@...>

> Subject: life after 1st ivig...

>

> Date: Wednesday, January 18, 2012, 1:26 AM

>

>

>

>

> Wanted to give a little update. My 4 yo had his 1st ivig on dec 1. He was

sick that day (no suprise there, he had a new or continuing infection every

2 weeks all of 2011). Within days of the infusion he was better no

antibiotics needed. He didnt get sick for the whole month even though we

went on vacation and 2 disney. He was starting to get sick right before the

second infusion but is well now (thank you ivig!)

>

> No reactions for the 1st infusion some reactions @hospital the 2nd time.

Super high heart rate, itchie throat and wheezing. They went twice as fast

though and i think that was the prob. The wheezing wasnt as bad as it seems

because he's a wheezer anyway and has been flaring. No other side effects

later at home though!

>

> Anyway, when one of the moms said to get ready our lives were about to

change she was not kidding! Ivig is the very best thing that has happened

to us in forever. It's crazy to see him well, playing, eating, you know

being a kid! He even gained weight!

>

> Thanks for all your help and support since this started. We still have

somethings to figure out, but I'm not panicked about the immediate future

anymore! This was the!1st January of his 4 yo life he wasn't in the

hospital with pneumonia!

>

> Liz

>

>

[Guest guest]

Ivig has been a godsend for us too. I am so nervous for our check up and

that the dr may discontinue treatment ...

On Jan 17, 2012 11:00 PM, " Sue Bordelon " <sudubo@...> wrote:

>

>

>

> Liz, so happy he's better...the IVIG is wonderful, he needed it! Hugs! sue

>

>

>

> From: Liz Pence <pencesiding@...>

> Subject: life after 1st ivig...

>

> Date: Wednesday, January 18, 2012, 1:26 AM

>

>

>

>

> Wanted to give a little update. My 4 yo had his 1st ivig on dec 1. He was

sick that day (no suprise there, he had a new or continuing infection every

2 weeks all of 2011). Within days of the infusion he was better no

antibiotics needed. He didnt get sick for the whole month even though we

went on vacation and 2 disney. He was starting to get sick right before the

second infusion but is well now (thank you ivig!)

>

> No reactions for the 1st infusion some reactions @hospital the 2nd time.

Super high heart rate, itchie throat and wheezing. They went twice as fast

though and i think that was the prob. The wheezing wasnt as bad as it seems

because he's a wheezer anyway and has been flaring. No other side effects

later at home though!

>

> Anyway, when one of the moms said to get ready our lives were about to

change she was not kidding! Ivig is the very best thing that has happened

to us in forever. It's crazy to see him well, playing, eating, you know

being a kid! He even gained weight!

>

> Thanks for all your help and support since this started. We still have

somethings to figure out, but I'm not panicked about the immediate future

anymore! This was the!1st January of his 4 yo life he wasn't in the

hospital with pneumonia!

>

> Liz

>

>

[Guest guest]

Liz,

That is great news!! I hope he continues to do well and thrive.

Mom to Caelan (CVID, asthma, severe food allergies, on Hizentra)

[Guest guest]

Liz, that is GREAT! I am smiling for you and wishing you guys the best. I hope

your experience is similar to ours, as it just continues to get better. We keep

alex's infusion rate at the slowest possible, he does much better. He used to

vomit within 3 days of the infusion and he showed slight signs of a head/body

aches (he was 2 so it was harder to tell). He does not get sick from the

infusions anymore that went away about 5 months or so. Just wanted to give you

a heads up on a couple things if you haven't already heard or know... typically

we keep a log of the information on the infusion bottle - an infusion log. I

made my own due to personal preference because i keep it in the same type of

journal as i keep a log of 's health. When he starts to get sick i write in

it and if we go to the Dr. etc... it has really helped me. In the log, i keep a

note of all the information, such as; order #, lot#, expiration, name, dose,

etc... I am sure everyones is different and they even have some pre-made ones

through some of the drug companies. When i first started this venture i found a

magazine called - IG Living. If you haven't requested it, you might want to go

to their website and ask for the magazne to be sent to you. it is free and it

is a great resource. I asked my son's pediatritian to subscribe to it also and

before we left the office, he was online signing up.

Good luck!Terrimom to (4 yrs old)

From: pencesiding@...

Date: Wed, 18 Jan 2012 01:26:56 +0000

Subject: life after 1st ivig...

Wanted to give a little update. My 4 yo had his 1st ivig on dec 1. He was

sick that day (no suprise there, he had a new or continuing infection every 2

weeks all of 2011). Within days of the infusion he was better no antibiotics

needed. He didnt get sick for the whole month even though we went on vacation

and 2 disney. He was starting to get sick right before the second infusion but

is well now (thank you ivig!)

No reactions for the 1st infusion some reactions @hospital the 2nd time. Super

high heart rate, itchie throat and wheezing. They went twice as fast though and

i think that was the prob. The wheezing wasnt as bad as it seems because he's a

wheezer anyway and has been flaring. No other side effects later at home though!

Anyway, when one of the moms said to get ready our lives were about to change

she was not kidding! Ivig is the very best thing that has happened to us in

forever. It's crazy to see him well, playing, eating, you know being a kid! He

even gained weight!

Thanks for all your help and support since this started. We still have

somethings to figure out, but I'm not panicked about the immediate future

anymore! This was the!1st January of his 4 yo life he wasn't in the hospital

with pneumonia!

Liz

[Guest guest]

Liz, that is GREAT! I am smiling for you and wishing you guys the best. I hope

your experience is similar to ours, as it just continues to get better. We keep

alex's infusion rate at the slowest possible, he does much better. He used to

vomit within 3 days of the infusion and he showed slight signs of a head/body

aches (he was 2 so it was harder to tell). He does not get sick from the

infusions anymore that went away about 5 months or so. Just wanted to give you

a heads up on a couple things if you haven't already heard or know... typically

we keep a log of the information on the infusion bottle - an infusion log. I

made my own due to personal preference because i keep it in the same type of

journal as i keep a log of 's health. When he starts to get sick i write in

it and if we go to the Dr. etc... it has really helped me. In the log, i keep a

note of all the information, such as; order #, lot#, expiration, name, dose,

etc... I am sure everyones is different and they even have some pre-made ones

through some of the drug companies. When i first started this venture i found a

magazine called - IG Living. If you haven't requested it, you might want to go

to their website and ask for the magazne to be sent to you. it is free and it

is a great resource. I asked my son's pediatritian to subscribe to it also and

before we left the office, he was online signing up.

Good luck!Terrimom to (4 yrs old)

From: pencesiding@...

Date: Wed, 18 Jan 2012 01:26:56 +0000

Subject: life after 1st ivig...

Wanted to give a little update. My 4 yo had his 1st ivig on dec 1. He was

sick that day (no suprise there, he had a new or continuing infection every 2

weeks all of 2011). Within days of the infusion he was better no antibiotics

needed. He didnt get sick for the whole month even though we went on vacation

and 2 disney. He was starting to get sick right before the second infusion but

is well now (thank you ivig!)

No reactions for the 1st infusion some reactions @hospital the 2nd time. Super

high heart rate, itchie throat and wheezing. They went twice as fast though and

i think that was the prob. The wheezing wasnt as bad as it seems because he's a

wheezer anyway and has been flaring. No other side effects later at home though!

Anyway, when one of the moms said to get ready our lives were about to change

she was not kidding! Ivig is the very best thing that has happened to us in

forever. It's crazy to see him well, playing, eating, you know being a kid! He

even gained weight!

Thanks for all your help and support since this started. We still have

somethings to figure out, but I'm not panicked about the immediate future

anymore! This was the!1st January of his 4 yo life he wasn't in the hospital

with pneumonia!

Liz

[Guest guest]

Liz Amazing isn't it ? My son started IVIG when he was six, and that was the

first year he wasn't in the hospital with pneumonia on his birthday. He has now

been doing IVIG every 4 weeks for the last 4 years and it has made a huge

difference to his life - and to our family. I was hesitant at first - IVIG

wasn't a common treatment for Hyper IgE - and I was reluctant to feel tied to a

4 week schedule - but I am convinced that it has helped keep his lungs infection

free. It has even improved his skin infections. It is also reassuring to be at

the hospital every 4 weeks - they are able to monitor him so closely now that

when any little thing comes up they are right on it. There will still be hurdles

along the way in the future. But every little bit of " normal " helps. Kim, mom

to Mathew (Hyper IgE - Job's Syndrome)