Re: Anyone with experience with an infant getting IVIG?

[Guest guest]

I am sure you must feel incredibly overwhelmed and that you life has turned

upside down. The incredible thing is that we have Gamma globulin which will

allow your boys to live an almost NORMAL life.

So I guess I am confused? Are you still in the hospital? Also what does the

blood pressure have to do with the IV site. Just know that it will get MUCH

easier over time. We did IV for 6 years every 3 weeks and now we do sub Q

weekly. It become just as easy as brushing their teeth. Are you planning to

stay with IV or go to sub Q? BARBIE

________________________________

From: Kimberley <kimberley.larsen@...>

Sent: Tue, May 4, 2010 8:58:48 AM

Subject: Anyone with experience with an infant getting IVIG?

Hey there,

Don't know if you know on here remember, but I posted a while back about my

newly-diagnosed toddler with XLA. Thanks so much for all the kind words of

support and advice! Soooo his baby brother has it, too. He's 7 months now.

They had their first IVIG at Chilren's in Chicago and it went really well with

no apparent side effects. (Hard to tell with baby because if he's crying I

don't know if it's from a headache or just teething . .. ) Anyway, he's getting

more and more mobile and I'm wondering if anyone has ideas on how to help with

that. He's getting the IV in his foot, and now he's working on crawling so I

don't know how that will work when I have him on the floor to give him exercise.

Part of time I put him in the stroller with the IV machine and walked him to

sleep, but his nap didn't last as long as it should so I need ways to keep him

happy while he's awake. I know the nurses do a good job of taping and such, but

does anyone have anything

I should know?

My eldest and the baby both hated the blood pressure checks every half hour as

they increased the rate -- any tips for dealing with that?

OK IVIG gurus/experts -- please let me know!

Thanks,

Kimberley

PS Should we look into Medicaid for my boys? We have a large max. out of pocket

to pay before the treatments are fully-covered, but realize we are lucky to have

even that kind of coverage . . .

[Guest guest]

I am sure you must feel incredibly overwhelmed and that you life has turned

upside down. The incredible thing is that we have Gamma globulin which will

allow your boys to live an almost NORMAL life.

So I guess I am confused? Are you still in the hospital? Also what does the

blood pressure have to do with the IV site. Just know that it will get MUCH

easier over time. We did IV for 6 years every 3 weeks and now we do sub Q

weekly. It become just as easy as brushing their teeth. Are you planning to

stay with IV or go to sub Q? BARBIE

________________________________

From: Kimberley <kimberley.larsen@...>

Sent: Tue, May 4, 2010 8:58:48 AM

Subject: Anyone with experience with an infant getting IVIG?

Hey there,

Don't know if you know on here remember, but I posted a while back about my

newly-diagnosed toddler with XLA. Thanks so much for all the kind words of

support and advice! Soooo his baby brother has it, too. He's 7 months now.

They had their first IVIG at Chilren's in Chicago and it went really well with

no apparent side effects. (Hard to tell with baby because if he's crying I

don't know if it's from a headache or just teething . .. ) Anyway, he's getting

more and more mobile and I'm wondering if anyone has ideas on how to help with

that. He's getting the IV in his foot, and now he's working on crawling so I

don't know how that will work when I have him on the floor to give him exercise.

Part of time I put him in the stroller with the IV machine and walked him to

sleep, but his nap didn't last as long as it should so I need ways to keep him

happy while he's awake. I know the nurses do a good job of taping and such, but

does anyone have anything

I should know?

My eldest and the baby both hated the blood pressure checks every half hour as

they increased the rate -- any tips for dealing with that?

OK IVIG gurus/experts -- please let me know!

Thanks,

Kimberley

PS Should we look into Medicaid for my boys? We have a large max. out of pocket

to pay before the treatments are fully-covered, but realize we are lucky to have

even that kind of coverage . . .

[Guest guest]

I am sorry that I can't help out with the question about IVIG.  We have not had

to do that yet.  However, I wanted to strongly encourage you to apply for the

Medicaid, especially since you have two kids on IVIG.  Some states have

something like an ill and handicap waiver, as well.  In our state, we did not

qualify for the Medicaid, but we applied for the waiver.  We were turned down

at first, so we appealed it.  With God's help, we were approved through the

appeal process, however, we were put on a waiting list.  When we originally

applied, our daughter was really sick, but by the time we got our turn to get

help, she was doing much better, so we ended up not being able to get the waiver

after all.  It is certainly an option to go for though.  It's a lot of

paperwork, but if you get approved, it will be a huge blessing!!!  Something

that we also did, was get a letter from our immunologist.  He recommended us

for the waiver, and explained her

syndrome in detail.  I wish you well in that process.

Thanks,

Roach, mother of Hannah Roach (2), hyper ige syndrome 

Psalm 145:5  I will meditate on your majestic, glorious splendor and your

wonderful miracles.

From: Kimberley <kimberley.larsen@...>

Subject: Anyone with experience with an infant getting IVIG?

Date: Tuesday, May 4, 2010, 10:58 AM

 

Hey there,

Don't know if you know on here remember, but I posted a while back about my

newly-diagnosed toddler with XLA. Thanks so much for all the kind words of

support and advice! Soooo his baby brother has it, too. He's 7 months now. They

had their first IVIG at Chilren's in Chicago and it went really well with no

apparent side effects. (Hard to tell with baby because if he's crying I don't

know if it's from a headache or just teething . .. ) Anyway, he's getting more

and more mobile and I'm wondering if anyone has ideas on how to help with that.

He's getting the IV in his foot, and now he's working on crawling so I don't

know how that will work when I have him on the floor to give him exercise. Part

of time I put him in the stroller with the IV machine and walked him to sleep,

but his nap didn't last as long as it should so I need ways to keep him happy

while he's awake. I know the nurses do a good job of taping and such, but does

anyone have anything I should

know?

My eldest and the baby both hated the blood pressure checks every half hour as

they increased the rate -- any tips for dealing with that?

OK IVIG gurus/experts -- please let me know!

Thanks,

Kimberley

PS Should we look into Medicaid for my boys? We have a large max. out of pocket

to pay before the treatments are fully-covered, but realize we are lucky to have

even that kind of coverage . . .

[Guest guest]

I am sorry that I can't help out with the question about IVIG.  We have not had

to do that yet.  However, I wanted to strongly encourage you to apply for the

Medicaid, especially since you have two kids on IVIG.  Some states have

something like an ill and handicap waiver, as well.  In our state, we did not

qualify for the Medicaid, but we applied for the waiver.  We were turned down

at first, so we appealed it.  With God's help, we were approved through the

appeal process, however, we were put on a waiting list.  When we originally

applied, our daughter was really sick, but by the time we got our turn to get

help, she was doing much better, so we ended up not being able to get the waiver

after all.  It is certainly an option to go for though.  It's a lot of

paperwork, but if you get approved, it will be a huge blessing!!!  Something

that we also did, was get a letter from our immunologist.  He recommended us

for the waiver, and explained her

syndrome in detail.  I wish you well in that process.

Thanks,

Roach, mother of Hannah Roach (2), hyper ige syndrome 

Psalm 145:5  I will meditate on your majestic, glorious splendor and your

wonderful miracles.

From: Kimberley <kimberley.larsen@...>

Subject: Anyone with experience with an infant getting IVIG?

Date: Tuesday, May 4, 2010, 10:58 AM

 

Hey there,

Don't know if you know on here remember, but I posted a while back about my

newly-diagnosed toddler with XLA. Thanks so much for all the kind words of

support and advice! Soooo his baby brother has it, too. He's 7 months now. They

had their first IVIG at Chilren's in Chicago and it went really well with no

apparent side effects. (Hard to tell with baby because if he's crying I don't

know if it's from a headache or just teething . .. ) Anyway, he's getting more

and more mobile and I'm wondering if anyone has ideas on how to help with that.

He's getting the IV in his foot, and now he's working on crawling so I don't

know how that will work when I have him on the floor to give him exercise. Part

of time I put him in the stroller with the IV machine and walked him to sleep,

but his nap didn't last as long as it should so I need ways to keep him happy

while he's awake. I know the nurses do a good job of taping and such, but does

anyone have anything I should

know?

My eldest and the baby both hated the blood pressure checks every half hour as

they increased the rate -- any tips for dealing with that?

OK IVIG gurus/experts -- please let me know!

Thanks,

Kimberley

PS Should we look into Medicaid for my boys? We have a large max. out of pocket

to pay before the treatments are fully-covered, but realize we are lucky to have

even that kind of coverage . . .

[Guest guest]

Kimberley -

My kids thought the blood pressure cuff was the SCARIEST part of the

whole procedure when they were little. We told them they were getting

an arm or leg hug, and used a lot of distraction techniques and super

calm voices - I can assure you, they get better with this in time.

Also, we used to try to let them push the blood pressure machine

button if they were sitting still and not fighting... ahh... I

remember - we also got them a play medical kit and let them practice

" taking " blood pressures on everyone else so they could see it

wouldn't hurt long term! I highly recommend a cart like this:

http://www.shop.com/Electronic_Medical_Cart_Toy-239060723-275993422-p+.xhtml?sou\

rceid=298

It really helped our kids process what was going on (and we got

them little lab coats and " doctor/nurse " costumes too.

As for the IV in the foot - we tried to stay away from them once the

kids were mobile if it could be avoided, so I don't have a lot of

suggestions there.

It really sounds like you are doing GREAT!

Dayna

On May 4, 2010, at 11:51 AM, Roach wrote:

> I am sorry that I can't help out with the question about IVIG. We

> have not had to do that yet. However, I wanted to strongly

> encourage you to apply for the Medicaid, especially since you have

> two kids on IVIG. Some states have something like an ill and

> handicap waiver, as well. In our state, we did not qualify for the

> Medicaid, but we applied for the waiver. We were turned down at

> first, so we appealed it. With God's help, we were approved through

> the appeal process, however, we were put on a waiting list. When we

> originally applied, our daughter was really sick, but by the time we

> got our turn to get help, she was doing much better, so we ended up

> not being able to get the waiver after all. It is certainly an

> option to go for though. It's a lot of paperwork, but if you get

> approved, it will be a huge blessing!!! Something that we also did,

> was get a letter from our immunologist. He recommended us for the

> waiver, and explained her

> syndrome in detail. I wish you well in that process.

> Thanks,

> Roach, mother of Hannah Roach (2), hyper ige syndrome

>

> Psalm 145:5 I will meditate on your majestic, glorious splendor and

> your wonderful miracles.

>

>

>

> From: Kimberley <kimberley.larsen@...>

> Subject: Anyone with experience with an infant getting IVIG?

>

> Date: Tuesday, May 4, 2010, 10:58 AM

>

>

>

> Hey there,

>

> Don't know if you know on here remember, but I posted a while back

> about my newly-diagnosed toddler with XLA. Thanks so much for all

> the kind words of support and advice! Soooo his baby brother has it,

> too. He's 7 months now. They had their first IVIG at Chilren's in

> Chicago and it went really well with no apparent side effects. (Hard

> to tell with baby because if he's crying I don't know if it's from a

> headache or just teething . .. ) Anyway, he's getting more and more

> mobile and I'm wondering if anyone has ideas on how to help with

> that. He's getting the IV in his foot, and now he's working on

> crawling so I don't know how that will work when I have him on the

> floor to give him exercise. Part of time I put him in the stroller

> with the IV machine and walked him to sleep, but his nap didn't last

> as long as it should so I need ways to keep him happy while he's

> awake. I know the nurses do a good job of taping and such, but does

> anyone have anything I should

> know?

>

> My eldest and the baby both hated the blood pressure checks every

> half hour as they increased the rate -- any tips for dealing with

> that?

>

> OK IVIG gurus/experts -- please let me know!

>

> Thanks,

> Kimberley

>

> PS Should we look into Medicaid for my boys? We have a large max.

> out of pocket to pay before the treatments are fully-covered, but

> realize we are lucky to have even that kind of coverage . . .

>

>

[Guest guest]

Kimberley -

My kids thought the blood pressure cuff was the SCARIEST part of the

whole procedure when they were little. We told them they were getting

an arm or leg hug, and used a lot of distraction techniques and super

calm voices - I can assure you, they get better with this in time.

Also, we used to try to let them push the blood pressure machine

button if they were sitting still and not fighting... ahh... I

remember - we also got them a play medical kit and let them practice

" taking " blood pressures on everyone else so they could see it

wouldn't hurt long term! I highly recommend a cart like this:

http://www.shop.com/Electronic_Medical_Cart_Toy-239060723-275993422-p+.xhtml?sou\

rceid=298

It really helped our kids process what was going on (and we got

them little lab coats and " doctor/nurse " costumes too.

As for the IV in the foot - we tried to stay away from them once the

kids were mobile if it could be avoided, so I don't have a lot of

suggestions there.

It really sounds like you are doing GREAT!

Dayna

On May 4, 2010, at 11:51 AM, Roach wrote:

> I am sorry that I can't help out with the question about IVIG. We

> have not had to do that yet. However, I wanted to strongly

> encourage you to apply for the Medicaid, especially since you have

> two kids on IVIG. Some states have something like an ill and

> handicap waiver, as well. In our state, we did not qualify for the

> Medicaid, but we applied for the waiver. We were turned down at

> first, so we appealed it. With God's help, we were approved through

> the appeal process, however, we were put on a waiting list. When we

> originally applied, our daughter was really sick, but by the time we

> got our turn to get help, she was doing much better, so we ended up

> not being able to get the waiver after all. It is certainly an

> option to go for though. It's a lot of paperwork, but if you get

> approved, it will be a huge blessing!!! Something that we also did,

> was get a letter from our immunologist. He recommended us for the

> waiver, and explained her

> syndrome in detail. I wish you well in that process.

> Thanks,

> Roach, mother of Hannah Roach (2), hyper ige syndrome

>

> Psalm 145:5 I will meditate on your majestic, glorious splendor and

> your wonderful miracles.

>

>

>

> From: Kimberley <kimberley.larsen@...>

> Subject: Anyone with experience with an infant getting IVIG?

>

> Date: Tuesday, May 4, 2010, 10:58 AM

>

>

>

> Hey there,

>

> Don't know if you know on here remember, but I posted a while back

> about my newly-diagnosed toddler with XLA. Thanks so much for all

> the kind words of support and advice! Soooo his baby brother has it,

> too. He's 7 months now. They had their first IVIG at Chilren's in

> Chicago and it went really well with no apparent side effects. (Hard

> to tell with baby because if he's crying I don't know if it's from a

> headache or just teething . .. ) Anyway, he's getting more and more

> mobile and I'm wondering if anyone has ideas on how to help with

> that. He's getting the IV in his foot, and now he's working on

> crawling so I don't know how that will work when I have him on the

> floor to give him exercise. Part of time I put him in the stroller

> with the IV machine and walked him to sleep, but his nap didn't last

> as long as it should so I need ways to keep him happy while he's

> awake. I know the nurses do a good job of taping and such, but does

> anyone have anything I should

> know?

>

> My eldest and the baby both hated the blood pressure checks every

> half hour as they increased the rate -- any tips for dealing with

> that?

>

> OK IVIG gurus/experts -- please let me know!

>

> Thanks,

> Kimberley

>

> PS Should we look into Medicaid for my boys? We have a large max.

> out of pocket to pay before the treatments are fully-covered, but

> realize we are lucky to have even that kind of coverage . . .

>

>

[Guest guest]

We always did it in the arm w/ it taped down to a board. Then we switched to

subcutaneous infusions.

It does get easier but we did a lot of work with her. The most important factor

for her was continuity of RN staff. She trusts them totally so her veins stay

relaxed. My daughter now does blood draws w/o a fuss. And this was a baby who

was stuck 4-6 times on average.

Hang in there.

Mom to Dani CVID

Sent on the Now Network™ from my Sprint® BlackBerry

Anyone with experience with an infant getting IVIG?

Hey there,

Don't know if you know on here remember, but I posted a while back about my

newly-diagnosed toddler with XLA. Thanks so much for all the kind words of

support and advice! Soooo his baby brother has it, too. He's 7 months now.

They had their first IVIG at Chilren's in Chicago and it went really well with

no apparent side effects. (Hard to tell with baby because if he's crying I

don't know if it's from a headache or just teething . .. ) Anyway, he's getting

more and more mobile and I'm wondering if anyone has ideas on how to help with

that. He's getting the IV in his foot, and now he's working on crawling so I

don't know how that will work when I have him on the floor to give him exercise.

Part of time I put him in the stroller with the IV machine and walked him to

sleep, but his nap didn't last as long as it should so I need ways to keep him

happy while he's awake. I know the nurses do a good job of taping and such, but

does anyone have anything I should know?

My eldest and the baby both hated the blood pressure checks every half hour as

they increased the rate -- any tips for dealing with that?

OK IVIG gurus/experts -- please let me know!

Thanks,

Kimberley

PS Should we look into Medicaid for my boys? We have a large max. out of pocket

to pay before the treatments are fully-covered, but realize we are lucky to have

even that kind of coverage . . .