Re: Toddler/Preschooler SCIG Infusions

[Guest guest]

Which infusion set are you using? I know for us we have to use the sofsets for

my skinny mini but using the injector pen was really painful for my daughter so

we manually insert the needles. The other sets which I can not remember the name

of right now, (its the one where the needle stays in rather then a cath) were

very painful for my daughter. What site areas are you using? Different from when

you first started? Say stomach and now thighs? He's young but have you offered

to give him some control over it? Have him put in the needle? If its the tiny

ones that stay in then its possible thats within his ability. My little one

started checking her own blood sugar when she was 2 to give her a feeling of

control (I was right there with her) and she stopped fighting because it was her

doing it and knowing when it was coming.

10 CVID *on SCIG about 3 years and insists mom pokes her*

Lilly *almost 5* CVID but stable without treatment, would be my child to insist

" I do it myself! " for SCIG.

________________________________

From: April <n2katz2003@...>

Sent: Sat, April 30, 2011 6:52:27 AM

Subject: Toddler/Preschooler SCIG Infusions

My son is a little over 3.5 years old and we have been doing weekly SCIG

infusions of Hizentra for about 3.5 months now. The Immunologist told me that

the longer we do them the more " used to " them my son would get and he would not

be as afraid of them. The first few times he would pretty much just lay in my

husband's lap and let me put the needle in without any issues. Then he started

to say he wanted to scream so we told him that was fine as long as he laid still

for us which he did. But the last 2-3 infusions have been an all out battle.

He kicks, screams, cries, hits my hand, and just fights horribly.

It seems like the longer we do the infusions the worse he is getting with them.

We have been able to get them all done though. Does anybody have any experience

with this? My son does have some delays so he is not able to communicate

completely at the level of an average 3.5 year old and he also has some sensory

issues.

I think he has developed a fear of needles because when we got blood work

yesterday he was worse than ever before. Normally in the past he would just sit

on my lap and watch without moving or crying. Yesterday he fought so hard and

actually ended up giving the tech a bloody nose when she reached down to get

something out of the drawer because he kicked and I wasn't holding him tight

enough. I just hope we can get over this hump and get back to doing it more

easily.

He does get to help me with the set up which he thinks is fun. Although the

last 2 weeks as soon as I take the stuff out he runs and hides under his bed or

behind a chair in th eliving room and won't help me with set up. We have used

EMLA cream for all of his infusions, but I honestly don't think it works for

him. He still lets out a massive scream as soon as the needle goes in. We have

a prize box that he gets to pick something out of for each infusion to play with

during infusion. Also, many times we will put on a movie or something else he

chooses.

I was diagnosed with Diabetes in 5th grade and had an extreme fear of needles.

I remember my mom did my shots for years and I would have to close my eyes. I

understand fear of needles very well, but it did take me a while to get over

it. Now I use an insulin pump and my son has watched me prep and insert that

which he thinks it cool that mommy has special medicine just like him. I do

feel bad for him having to go through it because I remember my struggles with

the Diabetes although I was older at diagnosis for that. He looks at me as the

bad guy and generally won't let me even change his diaper the rest of the day

because he yells " mommy no hurt me! " But I know he needs it so we do it.

------------------------------------

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[Guest guest]

How long are you leaving the EMLA on for? We've had varying responses from

my son as well. He's 11, but at times he doesn't flinch at all and says it

doesn't hurt and other times he really cries and you can tell it hurts him

because it is as soon as I put the needle in. We use a 4 set with the 9mm

needles and I insert them manually. We've found that the EMLA needs to be on

for an hour at minimum, but if you leave it on two hours it doesn't work

anymore. So, I usually shoot for drawing up the meds when the EMLA hits the

60 minute mark and that seems to be about right.

I'm sorry you have having so much difficulty.

Mom to Caelan 11 (SCIG Hizentra)

_____

From: [mailto: ] On Behalf Of

April

Sent: Saturday, April 30, 2011 8:52 AM

Subject: Toddler/Preschooler SCIG Infusions

My son is a little over 3.5 years old and we have been doing weekly SCIG

infusions of Hizentra for about 3.5 months now. The Immunologist told me

that the longer we do them the more " used to " them my son would get and he

would not be as afraid of them. The first few times he would pretty much

just lay in my husband's lap and let me put the needle in without any

issues. Then he started to say he wanted to scream so we told him that was

fine as long as he laid still for us which he did. But the last 2-3

infusions have been an all out battle. He kicks, screams, cries, hits my

hand, and just fights horribly.

It seems like the longer we do the infusions the worse he is getting with

them. We have been able to get them all done though. Does anybody have any

experience with this? My son does have some delays so he is not able to

communicate completely at the level of an average 3.5 year old and he also

has some sensory issues.

I think he has developed a fear of needles because when we got blood work

yesterday he was worse than ever before. Normally in the past he would just

sit on my lap and watch without moving or crying. Yesterday he fought so

hard and actually ended up giving the tech a bloody nose when she reached

down to get something out of the drawer because he kicked and I wasn't

holding him tight enough. I just hope we can get over this hump and get back

to doing it more easily.

He does get to help me with the set up which he thinks is fun. Although the

last 2 weeks as soon as I take the stuff out he runs and hides under his bed

or behind a chair in th eliving room and won't help me with set up. We have

used EMLA cream for all of his infusions, but I honestly don't think it

works for him. He still lets out a massive scream as soon as the needle goes

in. We have a prize box that he gets to pick something out of for each

infusion to play with during infusion. Also, many times we will put on a

movie or something else he chooses.

I was diagnosed with Diabetes in 5th grade and had an extreme fear of

needles. I remember my mom did my shots for years and I would have to close

my eyes. I understand fear of needles very well, but it did take me a while

to get over it. Now I use an insulin pump and my son has watched me prep and

insert that which he thinks it cool that mommy has special medicine just

like him. I do feel bad for him having to go through it because I remember

my struggles with the Diabetes although I was older at diagnosis for that.

He looks at me as the bad guy and generally won't let me even change his

diaper the rest of the day because he yells " mommy no hurt me! " But I know

he needs it so we do it.

[Guest guest]

I think it really varies, we have to hit the 2 hour mark or she feels it, 1 hour

is not long enough for her.

________________________________

From: Herzberg <skgcifamily@...>

Sent: Sat, April 30, 2011 7:32:44 AM

Subject: RE: Toddler/Preschooler SCIG Infusions

How long are you leaving the EMLA on for? We've had varying responses from

my son as well. He's 11, but at times he doesn't flinch at all and says it

doesn't hurt and other times he really cries and you can tell it hurts him

because it is as soon as I put the needle in. We use a 4 set with the 9mm

needles and I insert them manually. We've found that the EMLA needs to be on

for an hour at minimum, but if you leave it on two hours it doesn't work

anymore. So, I usually shoot for drawing up the meds when the EMLA hits the

60 minute mark and that seems to be about right.

I'm sorry you have having so much difficulty.

Mom to Caelan 11 (SCIG Hizentra)

_____

From: [mailto: ] On Behalf Of

April

Sent: Saturday, April 30, 2011 8:52 AM

Subject: Toddler/Preschooler SCIG Infusions

My son is a little over 3.5 years old and we have been doing weekly SCIG

infusions of Hizentra for about 3.5 months now. The Immunologist told me

that the longer we do them the more " used to " them my son would get and he

would not be as afraid of them. The first few times he would pretty much

just lay in my husband's lap and let me put the needle in without any

issues. Then he started to say he wanted to scream so we told him that was

fine as long as he laid still for us which he did. But the last 2-3

infusions have been an all out battle. He kicks, screams, cries, hits my

hand, and just fights horribly.

It seems like the longer we do the infusions the worse he is getting with

them. We have been able to get them all done though. Does anybody have any

experience with this? My son does have some delays so he is not able to

communicate completely at the level of an average 3.5 year old and he also

has some sensory issues.

I think he has developed a fear of needles because when we got blood work

yesterday he was worse than ever before. Normally in the past he would just

sit on my lap and watch without moving or crying. Yesterday he fought so

hard and actually ended up giving the tech a bloody nose when she reached

down to get something out of the drawer because he kicked and I wasn't

holding him tight enough. I just hope we can get over this hump and get back

to doing it more easily.

He does get to help me with the set up which he thinks is fun. Although the

last 2 weeks as soon as I take the stuff out he runs and hides under his bed

or behind a chair in th eliving room and won't help me with set up. We have

used EMLA cream for all of his infusions, but I honestly don't think it

works for him. He still lets out a massive scream as soon as the needle goes

in. We have a prize box that he gets to pick something out of for each

infusion to play with during infusion. Also, many times we will put on a

movie or something else he chooses.

I was diagnosed with Diabetes in 5th grade and had an extreme fear of

needles. I remember my mom did my shots for years and I would have to close

my eyes. I understand fear of needles very well, but it did take me a while

to get over it. Now I use an insulin pump and my son has watched me prep and

insert that which he thinks it cool that mommy has special medicine just

like him. I do feel bad for him having to go through it because I remember

my struggles with the Diabetes although I was older at diagnosis for that.

He looks at me as the bad guy and generally won't let me even change his

diaper the rest of the day because he yells " mommy no hurt me! " But I know

he needs it so we do it.

[Guest guest]

I think it really varies, we have to hit the 2 hour mark or she feels it, 1 hour

is not long enough for her.

________________________________

From: Herzberg <skgcifamily@...>

Sent: Sat, April 30, 2011 7:32:44 AM

Subject: RE: Toddler/Preschooler SCIG Infusions

How long are you leaving the EMLA on for? We've had varying responses from

my son as well. He's 11, but at times he doesn't flinch at all and says it

doesn't hurt and other times he really cries and you can tell it hurts him

because it is as soon as I put the needle in. We use a 4 set with the 9mm

needles and I insert them manually. We've found that the EMLA needs to be on

for an hour at minimum, but if you leave it on two hours it doesn't work

anymore. So, I usually shoot for drawing up the meds when the EMLA hits the

60 minute mark and that seems to be about right.

I'm sorry you have having so much difficulty.

Mom to Caelan 11 (SCIG Hizentra)

_____

From: [mailto: ] On Behalf Of

April

Sent: Saturday, April 30, 2011 8:52 AM

Subject: Toddler/Preschooler SCIG Infusions

My son is a little over 3.5 years old and we have been doing weekly SCIG

infusions of Hizentra for about 3.5 months now. The Immunologist told me

that the longer we do them the more " used to " them my son would get and he

would not be as afraid of them. The first few times he would pretty much

just lay in my husband's lap and let me put the needle in without any

issues. Then he started to say he wanted to scream so we told him that was

fine as long as he laid still for us which he did. But the last 2-3

infusions have been an all out battle. He kicks, screams, cries, hits my

hand, and just fights horribly.

It seems like the longer we do the infusions the worse he is getting with

them. We have been able to get them all done though. Does anybody have any

experience with this? My son does have some delays so he is not able to

communicate completely at the level of an average 3.5 year old and he also

has some sensory issues.

I think he has developed a fear of needles because when we got blood work

yesterday he was worse than ever before. Normally in the past he would just

sit on my lap and watch without moving or crying. Yesterday he fought so

hard and actually ended up giving the tech a bloody nose when she reached

down to get something out of the drawer because he kicked and I wasn't

holding him tight enough. I just hope we can get over this hump and get back

to doing it more easily.

He does get to help me with the set up which he thinks is fun. Although the

last 2 weeks as soon as I take the stuff out he runs and hides under his bed

or behind a chair in th eliving room and won't help me with set up. We have

used EMLA cream for all of his infusions, but I honestly don't think it

works for him. He still lets out a massive scream as soon as the needle goes

in. We have a prize box that he gets to pick something out of for each

infusion to play with during infusion. Also, many times we will put on a

movie or something else he chooses.

I was diagnosed with Diabetes in 5th grade and had an extreme fear of

needles. I remember my mom did my shots for years and I would have to close

my eyes. I understand fear of needles very well, but it did take me a while

to get over it. Now I use an insulin pump and my son has watched me prep and

insert that which he thinks it cool that mommy has special medicine just

like him. I do feel bad for him having to go through it because I remember

my struggles with the Diabetes although I was older at diagnosis for that.

He looks at me as the bad guy and generally won't let me even change his

diaper the rest of the day because he yells " mommy no hurt me! " But I know

he needs it so we do it.

[Guest guest]

My son is using the infusion set where the needle stays in the whole time (his

infusions tend to take about 15-20 minutes). It is a 6mm needle. I have always

manually inserted the needles and we are using the same location (belly) since

we started. Our Immunologist said since he is so skinny that was the only area

that looked like a good option for him right now. I don't think I could even

offer him to help with the needle for a few reasons. He has fine motor delays

so he really wouldn't be able to do it. Also, as soon as her sees me pull out

the supplies is when he goes crazy and hides. He wouldn't even give me a chance

to ask him to help. I really have no clue what is going on because everything

is the exact same with no changes since starting.

We put the EMLA cream on and then 1 hour after I put together the infusion

supplies and then insert the needle. So it is probably on for about 1 hour 15

minutes or so before I actually insert the needle.

[Guest guest]

April,

Just a thought here. We have been doing SCIG for almost 3 years now. We use

EMLA cream too. We got a new tube of it and noticed my daughter who just turned

6 started crying when we put the needles in. She never used to even flinch. We

did it another 3 more times and the same thing. We called our Hemaologist and

asked what it could be. We thought because we used the same area and she had

been using the EMLA for so long maybe her body was used to it and it wasn't

working. They had no idea what it could be. They even called the pharmacist at

our local children's hospital to ask them they had never heard of that. They

suggested we go pick up a new tube of it, maybe we got a bad batch of it. Well,

that must have been the problem because after that we didn't have another

problem. Maybe just a bad batch of cream?

Take care,

---- April <n2katz2003@...> wrote:

> My son is a little over 3.5 years old and we have been doing weekly SCIG

infusions of Hizentra for about 3.5 months now. The Immunologist told me that

the longer we do them the more " used to " them my son would get and he would not

be as afraid of them. The first few times he would pretty much just lay in my

husband's lap and let me put the needle in without any issues. Then he started

to say he wanted to scream so we told him that was fine as long as he laid still

for us which he did. But the last 2-3 infusions have been an all out battle.

He kicks, screams, cries, hits my hand, and just fights horribly.

>

> It seems like the longer we do the infusions the worse he is getting with

them. We have been able to get them all done though. Does anybody have any

experience with this? My son does have some delays so he is not able to

communicate completely at the level of an average 3.5 year old and he also has

some sensory issues.

>

> I think he has developed a fear of needles because when we got blood work

yesterday he was worse than ever before. Normally in the past he would just sit

on my lap and watch without moving or crying. Yesterday he fought so hard and

actually ended up giving the tech a bloody nose when she reached down to get

something out of the drawer because he kicked and I wasn't holding him tight

enough. I just hope we can get over this hump and get back to doing it more

easily.

>

> He does get to help me with the set up which he thinks is fun. Although the

last 2 weeks as soon as I take the stuff out he runs and hides under his bed or

behind a chair in th eliving room and won't help me with set up. We have used

EMLA cream for all of his infusions, but I honestly don't think it works for

him. He still lets out a massive scream as soon as the needle goes in. We have

a prize box that he gets to pick something out of for each infusion to play with

during infusion. Also, many times we will put on a movie or something else he

chooses.

>

> I was diagnosed with Diabetes in 5th grade and had an extreme fear of needles.

I remember my mom did my shots for years and I would have to close my eyes. I

understand fear of needles very well, but it did take me a while to get over it.

Now I use an insulin pump and my son has watched me prep and insert that which

he thinks it cool that mommy has special medicine just like him. I do feel bad

for him having to go through it because I remember my struggles with the

Diabetes although I was older at diagnosis for that. He looks at me as the bad

guy and generally won't let me even change his diaper the rest of the day

because he yells " mommy no hurt me! " But I know he needs it so we do it.

>

[Guest guest]

I would encourage you to find some counseling for him around it. My son has some

of the issues ( sensory etc) and it has been a battle for years. He too did well

initially but we were doing IVIg in his Drs office after we went off of it for 3

months it took over a year to get him to settle down when we started them again.

He is 15 now and refuses to use the emla because of the texture of it and how it

feels when it goes numb. He says he would rather feel the poke. All the things

you are doing are good to get him involved but unforunatly what my turned the

corner for us was to have someone else other than ME do the infusions for a few

months because he said he did not understand why I would want to hurt him. It

has been a tough battle. ( I am an RN so this was tough). But..... I would

agree to try changing the tube of emla and if.... this is the case I would

appreciate it if both of you contact the manufacturer so they can recall it.

BARBIE

________________________________

From: " Bfredrickson@... " <Bfredrickson@...>

Cc: April <n2katz2003@...>

Sent: Sat, April 30, 2011 9:20:28 AM

Subject: Re: Toddler/Preschooler SCIG Infusions

April,

Just a thought here. We have been doing SCIG for almost 3 years now. We use

EMLA cream too. We got a new tube of it and noticed my daughter who just turned

6 started crying when we put the needles in. She never used to even flinch. We

did it another 3 more times and the same thing. We called our Hemaologist and

asked what it could be. We thought because we used the same area and she had

been using the EMLA for so long maybe her body was used to it and it wasn't

working. They had no idea what it could be. They even called the pharmacist at

our local children's hospital to ask them they had never heard of that. They

suggested we go pick up a new tube of it, maybe we got a bad batch of it. Well,

that must have been the problem because after that we didn't have another

problem. Maybe just a bad batch of cream?

Take care,

---- April <n2katz2003@...> wrote:

> My son is a little over 3.5 years old and we have been doing weekly SCIG

>infusions of Hizentra for about 3.5 months now. The Immunologist told me that

>the longer we do them the more " used to " them my son would get and he would not

>be as afraid of them. The first few times he would pretty much just lay in my

>husband's lap and let me put the needle in without any issues. Then he started

>to say he wanted to scream so we told him that was fine as long as he laid

still

>for us which he did. But the last 2-3 infusions have been an all out battle.

>He kicks, screams, cries, hits my hand, and just fights horribly.

>

> It seems like the longer we do the infusions the worse he is getting with

them.

>We have been able to get them all done though. Does anybody have any

experience

>with this? My son does have some delays so he is not able to communicate

>completely at the level of an average 3.5 year old and he also has some sensory

>issues.

>

> I think he has developed a fear of needles because when we got blood work

>yesterday he was worse than ever before. Normally in the past he would just

sit

>on my lap and watch without moving or crying. Yesterday he fought so hard and

>actually ended up giving the tech a bloody nose when she reached down to get

>something out of the drawer because he kicked and I wasn't holding him tight

>enough. I just hope we can get over this hump and get back to doing it more

>easily.

>

> He does get to help me with the set up which he thinks is fun. Although the

>last 2 weeks as soon as I take the stuff out he runs and hides under his bed or

>behind a chair in th eliving room and won't help me with set up. We have used

>EMLA cream for all of his infusions, but I honestly don't think it works for

>him. He still lets out a massive scream as soon as the needle goes in. We have

>a prize box that he gets to pick something out of for each infusion to play

with

>during infusion. Also, many times we will put on a movie or something else he

>chooses.

>

> I was diagnosed with Diabetes in 5th grade and had an extreme fear of needles.

>I remember my mom did my shots for years and I would have to close my eyes. I

>understand fear of needles very well, but it did take me a while to get over

it.

>Now I use an insulin pump and my son has watched me prep and insert that which

>he thinks it cool that mommy has special medicine just like him. I do feel

bad

>for him having to go through it because I remember my struggles with the

>Diabetes although I was older at diagnosis for that. He looks at me as the bad

>guy and generally won't let me even change his diaper the rest of the day

>because he yells " mommy no hurt me! " But I know he needs it so we do it.

>

[Guest guest]

I would encourage you to find some counseling for him around it. My son has some

of the issues ( sensory etc) and it has been a battle for years. He too did well

initially but we were doing IVIg in his Drs office after we went off of it for 3

months it took over a year to get him to settle down when we started them again.

He is 15 now and refuses to use the emla because of the texture of it and how it

feels when it goes numb. He says he would rather feel the poke. All the things

you are doing are good to get him involved but unforunatly what my turned the

corner for us was to have someone else other than ME do the infusions for a few

months because he said he did not understand why I would want to hurt him. It

has been a tough battle. ( I am an RN so this was tough). But..... I would

agree to try changing the tube of emla and if.... this is the case I would

appreciate it if both of you contact the manufacturer so they can recall it.

BARBIE

________________________________

From: " Bfredrickson@... " <Bfredrickson@...>

Cc: April <n2katz2003@...>

Sent: Sat, April 30, 2011 9:20:28 AM

Subject: Re: Toddler/Preschooler SCIG Infusions

April,

Just a thought here. We have been doing SCIG for almost 3 years now. We use

EMLA cream too. We got a new tube of it and noticed my daughter who just turned

6 started crying when we put the needles in. She never used to even flinch. We

did it another 3 more times and the same thing. We called our Hemaologist and

asked what it could be. We thought because we used the same area and she had

been using the EMLA for so long maybe her body was used to it and it wasn't

working. They had no idea what it could be. They even called the pharmacist at

our local children's hospital to ask them they had never heard of that. They

suggested we go pick up a new tube of it, maybe we got a bad batch of it. Well,

that must have been the problem because after that we didn't have another

problem. Maybe just a bad batch of cream?

Take care,

---- April <n2katz2003@...> wrote:

> My son is a little over 3.5 years old and we have been doing weekly SCIG

>infusions of Hizentra for about 3.5 months now. The Immunologist told me that

>the longer we do them the more " used to " them my son would get and he would not

>be as afraid of them. The first few times he would pretty much just lay in my

>husband's lap and let me put the needle in without any issues. Then he started

>to say he wanted to scream so we told him that was fine as long as he laid

still

>for us which he did. But the last 2-3 infusions have been an all out battle.

>He kicks, screams, cries, hits my hand, and just fights horribly.

>

> It seems like the longer we do the infusions the worse he is getting with

them.

>We have been able to get them all done though. Does anybody have any

experience

>with this? My son does have some delays so he is not able to communicate

>completely at the level of an average 3.5 year old and he also has some sensory

>issues.

>

> I think he has developed a fear of needles because when we got blood work

>yesterday he was worse than ever before. Normally in the past he would just

sit

>on my lap and watch without moving or crying. Yesterday he fought so hard and

>actually ended up giving the tech a bloody nose when she reached down to get

>something out of the drawer because he kicked and I wasn't holding him tight

>enough. I just hope we can get over this hump and get back to doing it more

>easily.

>

> He does get to help me with the set up which he thinks is fun. Although the

>last 2 weeks as soon as I take the stuff out he runs and hides under his bed or

>behind a chair in th eliving room and won't help me with set up. We have used

>EMLA cream for all of his infusions, but I honestly don't think it works for

>him. He still lets out a massive scream as soon as the needle goes in. We have

>a prize box that he gets to pick something out of for each infusion to play

with

>during infusion. Also, many times we will put on a movie or something else he

>chooses.

>

> I was diagnosed with Diabetes in 5th grade and had an extreme fear of needles.

>I remember my mom did my shots for years and I would have to close my eyes. I

>understand fear of needles very well, but it did take me a while to get over

it.

>Now I use an insulin pump and my son has watched me prep and insert that which

>he thinks it cool that mommy has special medicine just like him. I do feel

bad

>for him having to go through it because I remember my struggles with the

>Diabetes although I was older at diagnosis for that. He looks at me as the bad

>guy and generally won't let me even change his diaper the rest of the day

>because he yells " mommy no hurt me! " But I know he needs it so we do it.

>

[Guest guest]

What brand was it anyway? We have problems with the Hi-Tech brand stuff not

working and they have to get us name brand EMLA now which is a problem since its

been back ordered for months and were on our last tube now.

________________________________

From: Barbara Jimenez <mother5590@...>

Sent: Sat, April 30, 2011 10:06:58 AM

Subject: Re: Toddler/Preschooler SCIG Infusions

I would encourage you to find some counseling for him around it. My son has some

of the issues ( sensory etc) and it has been a battle for years. He too did well

initially but we were doing IVIg in his Drs office after we went off of it for 3

months it took over a year to get him to settle down when we started them again.

He is 15 now and refuses to use the emla because of the texture of it and how it

feels when it goes numb. He says he would rather feel the poke. All the things

you are doing are good to get him involved but unforunatly what my turned the

corner for us was to have someone else other than ME do the infusions for a few

months because he said he did not understand why I would want to hurt him. It

has been a tough battle. ( I am an RN so this was tough). But..... I would

agree to try changing the tube of emla and if.... this is the case I would

appreciate it if both of you contact the manufacturer so they can recall it.

BARBIE

________________________________

From: " Bfredrickson@... " <Bfredrickson@...>

Cc: April <n2katz2003@...>

Sent: Sat, April 30, 2011 9:20:28 AM

Subject: Re: Toddler/Preschooler SCIG Infusions

April,

Just a thought here. We have been doing SCIG for almost 3 years now. We use

EMLA cream too. We got a new tube of it and noticed my daughter who just turned

6 started crying when we put the needles in. She never used to even flinch. We

did it another 3 more times and the same thing. We called our Hemaologist and

asked what it could be. We thought because we used the same area and she had

been using the EMLA for so long maybe her body was used to it and it wasn't

working. They had no idea what it could be. They even called the pharmacist at

our local children's hospital to ask them they had never heard of that. They

suggested we go pick up a new tube of it, maybe we got a bad batch of it. Well,

that must have been the problem because after that we didn't have another

problem. Maybe just a bad batch of cream?

Take care,

---- April <n2katz2003@...> wrote:

> My son is a little over 3.5 years old and we have been doing weekly SCIG

>infusions of Hizentra for about 3.5 months now. The Immunologist told me that

>the longer we do them the more " used to " them my son would get and he would not

>be as afraid of them. The first few times he would pretty much just lay in my

>husband's lap and let me put the needle in without any issues. Then he started

>to say he wanted to scream so we told him that was fine as long as he laid

still

>

>for us which he did. But the last 2-3 infusions have been an all out battle.

>He kicks, screams, cries, hits my hand, and just fights horribly.

>

> It seems like the longer we do the infusions the worse he is getting with

>them.

>

>We have been able to get them all done though. Does anybody have any

experience

>

>with this? My son does have some delays so he is not able to communicate

>completely at the level of an average 3.5 year old and he also has some sensory

>issues.

>

> I think he has developed a fear of needles because when we got blood work

>yesterday he was worse than ever before. Normally in the past he would just

sit

>

>on my lap and watch without moving or crying. Yesterday he fought so hard and

>actually ended up giving the tech a bloody nose when she reached down to get

>something out of the drawer because he kicked and I wasn't holding him tight

>enough. I just hope we can get over this hump and get back to doing it more

>easily.

>

> He does get to help me with the set up which he thinks is fun. Although the

>last 2 weeks as soon as I take the stuff out he runs and hides under his bed or

>behind a chair in th eliving room and won't help me with set up. We have used

>EMLA cream for all of his infusions, but I honestly don't think it works for

>him. He still lets out a massive scream as soon as the needle goes in. We have

>a prize box that he gets to pick something out of for each infusion to play

with

>

>during infusion. Also, many times we will put on a movie or something else he

>chooses.

>

> I was diagnosed with Diabetes in 5th grade and had an extreme fear of needles.

>

>I remember my mom did my shots for years and I would have to close my eyes. I

>understand fear of needles very well, but it did take me a while to get over

>it.

>

>Now I use an insulin pump and my son has watched me prep and insert that which

>he thinks it cool that mommy has special medicine just like him. I do feel

bad

>

>for him having to go through it because I remember my struggles with the

>Diabetes although I was older at diagnosis for that. He looks at me as the bad

>guy and generally won't let me even change his diaper the rest of the day

>because he yells " mommy no hurt me! " But I know he needs it so we do it.

>

[Guest guest]

I will definitely go ahead and get a refill of the EMLA and see if that makes a

difference. The tube we have now is Hi-Tech, I guess it is the generic for

EMLA?

I am not sure what kind of counseling we could do for him, but look into that

option. He has language delays so doesn't completely comprehend everything that

is said to him which makes general communication difficult. He does have tons

of tantrums and frustration (comes out in anger or aggression) because of this.

He has a genetic disorder which has caused his various delays.

I thought about trying to figure out a way to have somebody else do the

infusions so I am not the bad guy and can try to comfort him, but just haven't

thought of any possible ways. Unfortunately, my husband gets queasy with

needles (he can't even watch me put my insulin pump needle in) and we don't have

any family close by. Our insurance will not cover at-home nurse (did first

infusion in Immunology clinic with the nurse practitioner). Also, he has issues

with being touched by people he doesn't know (part of his sensory and lack of

social skills) so I think it might be more traumatic having somebody else do it.

Today he did much better. He didn't run away from me. My husband is out of

town so my best friend (his godmother who we lived with for a year so he knows

well) came to help. I am realizing maybe my husband's uneasiness with needles

gets my son worked up. He did still scream as the needle went in though. I

really appreciate everyone's advice and suggestions!!

[Guest guest]

I will definitely go ahead and get a refill of the EMLA and see if that makes a

difference. The tube we have now is Hi-Tech, I guess it is the generic for

EMLA?

I am not sure what kind of counseling we could do for him, but look into that

option. He has language delays so doesn't completely comprehend everything that

is said to him which makes general communication difficult. He does have tons

of tantrums and frustration (comes out in anger or aggression) because of this.

He has a genetic disorder which has caused his various delays.

I thought about trying to figure out a way to have somebody else do the

infusions so I am not the bad guy and can try to comfort him, but just haven't

thought of any possible ways. Unfortunately, my husband gets queasy with

needles (he can't even watch me put my insulin pump needle in) and we don't have

any family close by. Our insurance will not cover at-home nurse (did first

infusion in Immunology clinic with the nurse practitioner). Also, he has issues

with being touched by people he doesn't know (part of his sensory and lack of

social skills) so I think it might be more traumatic having somebody else do it.

Today he did much better. He didn't run away from me. My husband is out of

town so my best friend (his godmother who we lived with for a year so he knows

well) came to help. I am realizing maybe my husband's uneasiness with needles

gets my son worked up. He did still scream as the needle went in though. I

really appreciate everyone's advice and suggestions!!

[Guest guest]

I will give the Immunology NP a call and see if they have some sort of play

therapy. We go to s Hopkins Children's and I know they are associated with

Kennedy Krieger (my son goes there yearly in the Autism department since he has

so many autistic tendencies, but tests just off the spectrum). So they probably

have something I could use also. We are waiting for a call from the Behavior

Therapy department at the moment so they might be the ones to talk to about the

play therapy. I had not thought about this option, thank you!

I also had not even thought about trying to cream on myself to see if it would

work. Will definitely do that as well.

[Guest guest]

Yes, we do cover the EMLA cream while it is on him. At first we used Tegaderm,

but his skin seems to react to it and he would scream like crazy when we had to

take it off. So now we use the press and seal plastic wrap which seems to work

great.

I have heard of the kit from Baxter, but I think it is geared towards the IVIG

and not the SCIG so I am not sure if it would help us out or not. I did go

ahead and order it yesterday to see what it is like.

I know all kids are different and require different things. I also realize

things will change as their age changes. I think this 3 year old range has been

the hardest so far with my twins!

[Guest guest]

Yes, we do cover the EMLA cream while it is on him. At first we used Tegaderm,

but his skin seems to react to it and he would scream like crazy when we had to

take it off. So now we use the press and seal plastic wrap which seems to work

great.

I have heard of the kit from Baxter, but I think it is geared towards the IVIG

and not the SCIG so I am not sure if it would help us out or not. I did go

ahead and order it yesterday to see what it is like.

I know all kids are different and require different things. I also realize

things will change as their age changes. I think this 3 year old range has been

the hardest so far with my twins!

[Guest guest]

when my daughter was younger and started expressing anxiety about her infusions,

we started using a little ativan to help calm her on the ride down, and keep her

calm throughout the poke. She had a couple of painful experiences there and

those few bad associations made her very anxious, she would constantly talk

about the next time we had to go, be unable to sleep the night before, stay up

all night in the kitchen drinking water, then when we got there she would zone

out, not be able to talk or communicate with the nurse or me. We worked with a

behavioral dr and she rec'd the ativan, just until we could get things under

control, while we taught her some ways to relax during the poke and for IVIG.

Slowly, we weaned her off it...we only did it for maybe a year or so, but it

really made a big difference. Now she is 13 and does great with it.

valarie

mom to 3 w/cvid

>

> I want to make sure that I did not misrepresent that my NOT doing the

infusions

> is the BEST thing for my son. It has been a ongoing journey to listen to his

> needs. He has IVIG from 3-10 years old every 3 weeks at his Drs. office. We

> started Sub Q at age 10 AFTER we did a trial off and retested him. ( he failed

> miserably) but.... he was not willing to go back to the IVIg and we had moved

to

> Oklahoma and they gave us 1 option and that was to start subQ and I was

REQUIRED

> to do it. His ANGER around infusions was mostly a panick about life in

general.

> AS I said he is doing better and after my not doing it for 6 months allowed

him

> to work through things and be ready for me to help him again. I am hoping that

> one day soon HE will be willing to take charge of his infusions but for now

that

> is NOT AN OPTION even though I keep trying. He does take his own needles out

> after it has infused. Hope this helps. The message I wanted to share is that

> EACH child is unique and helping them find peace with their illness starts

early

> and needs to be reevaluated over the years. It would have been nice to have

had

> an EASY kid but I have NEVER had one. Both of my kids have had significant

> medical issues but they are both adopted and we had NO IDEA before we adopted

> them as newborns.

>

>

> BARBIE

>

>

>

>

> ________________________________

> From: Terri Cahill <terric2000@...>

> PEDPID < >

> Sent: Sat, April 30, 2011 7:50:09 PM

> Subject: RE: Re: Toddler/Preschooler SCIG Infusions

>

>

> Hi All ~ You guys are all amazing to me in a very positive way. I am going

> through so many similar issues too. My son has something different and goes

> through a little different of a procedure, but maybe some will apply...

>

>

> My son is 3 1/2 (has XLA) and he has been receiving IVIG's from Riley's

> Childrens Hospital for a little over a year. this is a 2 hour drive for us.

> 1/2 way down if our van TV wasn't working and he realized where he was he

would

> beg me to turn around because they hurt me there - for 1 solid hour he begged

> me. Then, it slowly got better, but he would realize it when we got to the

> parking garage and through the whole procedure of parking, he would beg me not

> to go in and go home because " they hurt me in there " . It is nice having

someone

> else put the needle in him for the IV, as I need to be the person on " his

> side " . We used to have to wrap him in a blanket and 4 of us hold him ~ he is

> really strong, moves quickly, etc. But the time before last, it was his

> " hospital girl " distracting him with a video (i will explain her in the next

> paragrah), the nurse putting in the IV and the nurse holding his arm... I was

> able to stand and be there for him if and when he needed me.

>

>

> Baxter sent us a kit for children that teaches (the parent) about role play

and

> different options to do with it. They sent us a teddy bear and an entire kit

to

> perform an IVIG (less only the metal needle)... so he went back and forth for

> quite a while, looking at it, not looking at it, then playing with it, we got

to

> the point where we are now even doing IVIG's on our Great Dane (ha, ha). Now,

I

> notice several days before he is due for his next IVIG (every 4 weeks), he

gets

> his kit out. He does not know when he is getting the IVIG as I never tell him

> when... his body just knows and he gets the kit out. He has done this for 3

> months in a row now. In reveiwing this kit there is an age appropriate book

> that refers to this kid (in the story) as his " hospital girl " , well she is a

> " Child Life Specialist " . I called the Childrens Hospital and sure enough,

they

> have one for their in-patient and out patient. Since she has been with him

for

> 3 or 4 months now, it has been even better. She totally " distracts " him

during

> the " procedure " time and brings him things (toys), plays with the Ipad, games

> and video's. It is the person in the hospital that " belongs to the hospital "

> but doesn't hurt him... she is his alli and I am his comforter. It is working

> real well. She started to do the role playing with him and he didn't want

> nothing to do with it with her. Maybe we will try again, we will take his

> lead.

>

>

> My son had a speech delay, but I think that development was only on the

> backburner because he felt so bad all his life and now he is catching up quite

> fast. He seems to be fine mentally and ahead on his learning. But,

> behaviorally we seem to be entering into a bad temper tantrum phase for his

age,

> I think it is both his " life experiences and his age " . We were at the store

> yesterday and my husband got to see first hand the new tantrum as he stood in

> the isle, clinched his fists, his face shook slightly, got slightly red as he

> let out a blood curtling scream. I said, Oh my. For quite a whie I couldn't

> figure out if he was acting out or if it was just his age, sometimes I think

it

> is a little one way and a little the other. My son needs an outlet for his

> anger, frustration, etc. I think I need to do some checking with his Child

life

> specialist and see if she has some ideas for my son. Maybe some new physical

> exercises such as pounding nails into a board of wood, maybe not age

> appropriate, but I think you might understand what I mean. Something that he

> can really get his hands on and not have to " think " about, just do. Maybe

even

> you all can help me think of some things.

>

>

> I have to say I have had the EXACT same situation with our " numbing cream " . I

> will have to check that out too. My sister is an OB/GYN in Ohio and she said

> there are 2 strengths of numbing cream, might want to ask the Dr. about that

> too. Not sure is if it is too strong for the children. I was told that the

> numbing cream peaks at 1 hour, so I and the nurses work around when I put the

> cream on. I am sure you do, but do you also put a plastic type cover over the

> numbing cream while it is doing it's magic? Sorry that I am not as technical

as

> you guys, I am so, still learning.

>

>

>

> Sorry I wrote so much, didn't realize I had so much to type. I am even

> surprised my fingers are working this late into the evening.

> I am new to this group and I wanted to tell you that all of your words that

you

> guys type help me too, in so many ways, thank you so much.

>

>

>

> Terri

> mother of 3 year old with XLA

>

>

>

>

>

>

> From: mother5590@...

> Date: Sat, 30 Apr 2011 18:44:48 -0700

> Subject: Re: Re: Toddler/Preschooler SCIG Infusions

>

>

>

>

>

>

> As you know with out kids it is ALL trial and error but our hearts keep

guiding

> us as they morph and transform to their greatest potential. You will figure it

> out.

>

> BARBIE

>

> ________________________________

> From: April <n2katz2003@...>

>

> Sent: Sat, April 30, 2011 6:18:26 PM

> Subject: Re: Toddler/Preschooler SCIG Infusions

>

> I will give the Immunology NP a call and see if they have some sort of play

> therapy. We go to s Hopkins Children's and I know they are associated with

> Kennedy Krieger (my son goes there yearly in the Autism department since he

has

> so many autistic tendencies, but tests just off the spectrum). So they

probably

> have something I could use also. We are waiting for a call from the Behavior

> Therapy department at the moment so they might be the ones to talk to about

the

> play therapy. I had not thought about this option, thank you!

>

> I also had not even thought about trying to cream on myself to see if it would

> work. Will definitely do that as well.

>

>

[Guest guest]

my three kids do monthly IVIG. The option of weekly SCIG is there and they know

it, but none of them want me to be the one to do the pokes. They are very

adamant they want me to be the one to comfort them, not hurt them. Since our ins

covers IVIG, we stick with it bc of this. They have a great nurse and are

comfortable with the routine. Im not interested in rocking the boat!! but,

Savannah is 13 and we have talked to her several times, shown her articles and

the websites for SCIG, since at some point in the next few years as she gets

older or maybe goes off to college that might be an option for her. But, since

they are comfortable and so am I, we will stick with ivig.

That said, every kid is different and is going to tolerate different things.

These illnesses are so hard anyway, and adding the choices of treatments and

all, just makes it harder. Every family has to come to their decisin that is

best for themselves. Some kids will do better with SCIG and some kids may always

need IVIG. Neither is the wrong option.

My youngest son had speech delays and I totally feel for the original

poster.....I know its so hard when they are trying to comminicate and you cant

understand what they need!!

One thing that really helped my daughter and son when they were younger was

therapy for sensory problems, have you looked into that? a weighted blanket

really helped my daughter, I made my own, it really helped to calm her.

valarie

mom to 3 w/cvid

>

> I want to make sure that I did not misrepresent that my NOT doing the

infusions

> is the BEST thing for my son. It has been a ongoing journey to listen to his

> needs. He has IVIG from 3-10 years old every 3 weeks at his Drs. office. We

> started Sub Q at age 10 AFTER we did a trial off and retested him. ( he failed

> miserably) but.... he was not willing to go back to the IVIg and we had moved

to

> Oklahoma and they gave us 1 option and that was to start subQ and I was

REQUIRED

> to do it. His ANGER around infusions was mostly a panick about life in

general.

> AS I said he is doing better and after my not doing it for 6 months allowed

him

> to work through things and be ready for me to help him again. I am hoping that

> one day soon HE will be willing to take charge of his infusions but for now

that

> is NOT AN OPTION even though I keep trying. He does take his own needles out

> after it has infused. Hope this helps. The message I wanted to share is that

> EACH child is unique and helping them find peace with their illness starts

early

> and needs to be reevaluated over the years. It would have been nice to have

had

> an EASY kid but I have NEVER had one. Both of my kids have had significant

> medical issues but they are both adopted and we had NO IDEA before we adopted

> them as newborns.

>

>

> BARBIE

>

>

>

>

> ________________________________

> From: Terri Cahill <terric2000@...>

> PEDPID < >

> Sent: Sat, April 30, 2011 7:50:09 PM

> Subject: RE: Re: Toddler/Preschooler SCIG Infusions

>

>

> Hi All ~ You guys are all amazing to me in a very positive way. I am going

> through so many similar issues too. My son has something different and goes

> through a little different of a procedure, but maybe some will apply...

>

>

> My son is 3 1/2 (has XLA) and he has been receiving IVIG's from Riley's

> Childrens Hospital for a little over a year. this is a 2 hour drive for us.

> 1/2 way down if our van TV wasn't working and he realized where he was he

would

> beg me to turn around because they hurt me there - for 1 solid hour he begged

> me. Then, it slowly got better, but he would realize it when we got to the

> parking garage and through the whole procedure of parking, he would beg me not

> to go in and go home because " they hurt me in there " . It is nice having

someone

> else put the needle in him for the IV, as I need to be the person on " his

> side " . We used to have to wrap him in a blanket and 4 of us hold him ~ he is

> really strong, moves quickly, etc. But the time before last, it was his

> " hospital girl " distracting him with a video (i will explain her in the next

> paragrah), the nurse putting in the IV and the nurse holding his arm... I was

> able to stand and be there for him if and when he needed me.

>

>

> Baxter sent us a kit for children that teaches (the parent) about role play

and

> different options to do with it. They sent us a teddy bear and an entire kit

to

> perform an IVIG (less only the metal needle)... so he went back and forth for

> quite a while, looking at it, not looking at it, then playing with it, we got

to

> the point where we are now even doing IVIG's on our Great Dane (ha, ha). Now,

I

> notice several days before he is due for his next IVIG (every 4 weeks), he

gets

> his kit out. He does not know when he is getting the IVIG as I never tell him

> when... his body just knows and he gets the kit out. He has done this for 3

> months in a row now. In reveiwing this kit there is an age appropriate book

> that refers to this kid (in the story) as his " hospital girl " , well she is a

> " Child Life Specialist " . I called the Childrens Hospital and sure enough,

they

> have one for their in-patient and out patient. Since she has been with him

for

> 3 or 4 months now, it has been even better. She totally " distracts " him

during

> the " procedure " time and brings him things (toys), plays with the Ipad, games

> and video's. It is the person in the hospital that " belongs to the hospital "

> but doesn't hurt him... she is his alli and I am his comforter. It is working

> real well. She started to do the role playing with him and he didn't want

> nothing to do with it with her. Maybe we will try again, we will take his

> lead.

>

>

> My son had a speech delay, but I think that development was only on the

> backburner because he felt so bad all his life and now he is catching up quite

> fast. He seems to be fine mentally and ahead on his learning. But,

> behaviorally we seem to be entering into a bad temper tantrum phase for his

age,

> I think it is both his " life experiences and his age " . We were at the store

> yesterday and my husband got to see first hand the new tantrum as he stood in

> the isle, clinched his fists, his face shook slightly, got slightly red as he

> let out a blood curtling scream. I said, Oh my. For quite a whie I couldn't

> figure out if he was acting out or if it was just his age, sometimes I think

it

> is a little one way and a little the other. My son needs an outlet for his

> anger, frustration, etc. I think I need to do some checking with his Child

life

> specialist and see if she has some ideas for my son. Maybe some new physical

> exercises such as pounding nails into a board of wood, maybe not age

> appropriate, but I think you might understand what I mean. Something that he

> can really get his hands on and not have to " think " about, just do. Maybe

even

> you all can help me think of some things.

>

>

> I have to say I have had the EXACT same situation with our " numbing cream " . I

> will have to check that out too. My sister is an OB/GYN in Ohio and she said

> there are 2 strengths of numbing cream, might want to ask the Dr. about that

> too. Not sure is if it is too strong for the children. I was told that the

> numbing cream peaks at 1 hour, so I and the nurses work around when I put the

> cream on. I am sure you do, but do you also put a plastic type cover over the

> numbing cream while it is doing it's magic? Sorry that I am not as technical

as

> you guys, I am so, still learning.

>

>

>

> Sorry I wrote so much, didn't realize I had so much to type. I am even

> surprised my fingers are working this late into the evening.

> I am new to this group and I wanted to tell you that all of your words that

you

> guys type help me too, in so many ways, thank you so much.

>

>

>

> Terri

> mother of 3 year old with XLA

>

>

>

>

>

>

> From: mother5590@...

> Date: Sat, 30 Apr 2011 18:44:48 -0700

> Subject: Re: Re: Toddler/Preschooler SCIG Infusions

>

>

>

>

>

>

> As you know with out kids it is ALL trial and error but our hearts keep

guiding

> us as they morph and transform to their greatest potential. You will figure it

> out.

>

> BARBIE

>

> ________________________________

> From: April <n2katz2003@...>

>

> Sent: Sat, April 30, 2011 6:18:26 PM

> Subject: Re: Toddler/Preschooler SCIG Infusions

>

> I will give the Immunology NP a call and see if they have some sort of play

> therapy. We go to s Hopkins Children's and I know they are associated with

> Kennedy Krieger (my son goes there yearly in the Autism department since he

has

> so many autistic tendencies, but tests just off the spectrum). So they

probably

> have something I could use also. We are waiting for a call from the Behavior

> Therapy department at the moment so they might be the ones to talk to about

the

> play therapy. I had not thought about this option, thank you!

>

> I also had not even thought about trying to cream on myself to see if it would

> work. Will definitely do that as well.

>

>

[Guest guest]

If he continues to have the same anxiety even after switching creams I will talk

with the Immunologist about other options such as the ativan. I am not sure if

that is an option since we don't do the IVIG. We chose SCIG for a few reasons:

my son has very bad IV access, he rarely does well with others touching him, our

Immunologist feels SCIG has less side effects, and I liked the flexibility of

SCIG hoping he wouldn't miss as much school since we can do it on the weekend.

But I know someday he might need to move to IVIG for whatever unseen reason so

that is always in our minds as well.

My son has been receiving various therapies through Early Intervention since he

was 10 months old and now is in their special ed preschool. He gets OT to help

with his sensory stuff. I am looking into different options for possible play

therapy because I think that might be a good thing for him since he is unable to

fully communicate.

I am so glad I found this group because everyone is so helpful and has great

suggestions! Thank you.

[Guest guest]

my oldest daughter used to feel left out, esp when the other three had infusion

day and 'got " to miss school and she had to go. I felt pulled in so many

directions, I wanted to do more things with just her but its hard when you are

already going in 300 different directions.

I started trying to make just a few minutes daily to do with just her. Even if

it was only reading a book together before bed, just us, painting her nails, or

taking a walk, just the two of us. The idea was to make her feel special, to let

her know that I really wanted to spend time with just her.

I was lucky that I was also able to enlist my dad, when he was alive, bc he

would pick her up the mornings I had to leave her for infusions and take her to

school, he would come early and take her out for breakfast, which was something

the other kids never got to do.

There was a great book I read....something like " the other sibling " but I cant

recall the authors name. It was a great book about how to treat the siblings of

a kid with a chronic illness.

valarie

mom to 3 w/cvid

>

>

> Good Morning. For me, it is understood that every child is different and the

different situations that work for the child and the family are different and

different things work. I enjoy reading the different techniques and situations

that different children and parents use to see if I can apply any of them for my

situation with my family and my child. Thank you again.

>

> I have another situation I would appreciate some feedback. I have 3 children:

10, 3, 10 months. The only one with medical issues so far

is , but my oldest son is having his own mental/behavior issues because of

getting treatments. I think he is jealous of the time/attention that

gets... eventhough he really doesn't get (but he also does understand to some

degrees) that is physically ill or going through his IVIG's, etc... and we

have to clean up, find out what is wrong, comfort, go to the Dr, etc. Then

there is a baby that needs quite a bit attention... gets breast fed, etc...

Have anyone of you gone through this type or similar situation and if so, what

did you do or do you have any suggestions. (There is a sibling workshop at the

childrens hospital that we want to go to in June... )

>

>

> All feedback is appreciated as we are new to all of this. Thank you.

>

>

> >

> > From: terric2000@...

> > Date: Sat, 30 Apr 2011 22:50:09 -0400

> > Subject: RE: Re: Toddler/Preschooler SCIG Infusions

> >

> >

> > Hi All ~ You guys are all amazing to me in a very positive way. I am going

through so many similar issues too. My son has something different and goes

through a little different of a procedure, but maybe some will apply...

> >

> > My son is 3 1/2 (has XLA) and he has been receiving IVIG's from Riley's

Childrens Hospital for a little over a year. this is a 2 hour drive for us. 1/2

way down if our van TV wasn't working and he realized where he was he would beg

me to turn around because they hurt me there - for 1 solid hour he begged me.

Then, it slowly got better, but he would realize it when we got to the parking

garage and through the whole procedure of parking, he would beg me not to go in

and go home because " they hurt me in there " . It is nice having someone else put

the needle in him for the IV, as I need to be the person on " his side " . We used

to have to wrap him in a blanket and 4 of us hold him ~ he is really strong,

moves quickly, etc. But the time before last, it was his " hospital girl "

distracting him with a video (i will explain her in the next paragrah), the

nurse putting in the IV and the nurse holding his arm... I was able to stand and

be there for him if and when he needed me.

> >

> > Baxter sent us a kit for children that teaches (the parent) about role play

and different options to do with it. They sent us a teddy bear and an entire kit

to perform an IVIG (less only the metal needle)... so he went back and forth for

quite a while, looking at it, not looking at it, then playing with it, we got to

the point where we are now even doing IVIG's on our Great Dane (ha, ha). Now, I

notice several days before he is due for his next IVIG (every 4 weeks), he gets

his kit out. He does not know when he is getting the IVIG as I never tell him

when... his body just knows and he gets the kit out. He has done this for 3

months in a row now. In reveiwing this kit there is an age appropriate book that

refers to this kid (in the story) as his " hospital girl " , well she is a " Child

Life Specialist " . I called the Childrens Hospital and sure enough, they have one

for their in-patient and out patient. Since she has been with him for 3 or 4

months now, it has been even better. She totally " distracts " him during the

" procedure " time and brings him things (toys), plays with the Ipad, games and

video's. It is the person in the hospital that " belongs to the hospital " but

doesn't hurt him... she is his alli and I am his comforter. It is working real

well. She started to do the role playing with him and he didn't want nothing to

do with it with her. Maybe we will try again, we will take his lead.

> >

> > My son had a speech delay, but I think that development was only on the

backburner because he felt so bad all his life and now he is catching up quite

fast. He seems to be fine mentally and ahead on his learning. But, behaviorally

we seem to be entering into a bad temper tantrum phase for his age, I think it

is both his " life experiences and his age " . We were at the store yesterday and

my husband got to see first hand the new tantrum as he stood in the isle,

clinched his fists, his face shook slightly, got slightly red as he let out a

blood curtling scream. I said, Oh my. For quite a whie I couldn't figure out if

he was acting out or if it was just his age, sometimes I think it is a little

one way and a little the other. My son needs an outlet for his anger,

frustration, etc. I think I need to do some checking with his Child life

specialist and see if she has some ideas for my son. Maybe some new physical

exercises such as pounding nails into a board of wood, maybe not age

appropriate, but I think you might understand what I mean. Something that he can

really get his hands on and not have to " think " about, just do. Maybe even you

all can help me think of some things.

> >

> > I have to say I have had the EXACT same situation with our " numbing cream " .

I will have to check that out too. My sister is an OB/GYN in Ohio and she said

there are 2 strengths of numbing cream, might want to ask the Dr. about that

too. Not sure is if it is too strong for the children. I was told that the

numbing cream peaks at 1 hour, so I and the nurses work around when I put the

cream on. I am sure you do, but do you also put a plastic type cover over the

numbing cream while it is doing it's magic? Sorry that I am not as technical as

you guys, I am so, still learning.

> >

> >

> > Sorry I wrote so much, didn't realize I had so much to type. I am even

surprised my fingers are working this late into the evening.

> > I am new to this group and I wanted to tell you that all of your words that

you guys type help me too, in so many ways, thank you so much.

> >

> >

> >

> > Terri

> > mother of 3 year old with XLA

> >

> >

> >

> >

> >

> >

> > From: mother5590@...

> > Date: Sat, 30 Apr 2011 18:44:48 -0700

> > Subject: Re: Re: Toddler/Preschooler SCIG Infusions

> >

> >

> >

> >

> >

> >

> > As you know with out kids it is ALL trial and error but our hearts keep

guiding

> > us as they morph and transform to their greatest potential. You will figure

it

> > out.

> >

> > BARBIE

> >

> > ________________________________

> > From: April <n2katz2003@...>

> >

> > Sent: Sat, April 30, 2011 6:18:26 PM

> > Subject: Re: Toddler/Preschooler SCIG Infusions

> >

> > I will give the Immunology NP a call and see if they have some sort of play

> > therapy. We go to s Hopkins Children's and I know they are associated

with

> > Kennedy Krieger (my son goes there yearly in the Autism department since he

has

> > so many autistic tendencies, but tests just off the spectrum). So they

probably

> > have something I could use also. We are waiting for a call from the Behavior

> > Therapy department at the moment so they might be the ones to talk to about

the

> > play therapy. I had not thought about this option, thank you!

> >

> > I also had not even thought about trying to cream on myself to see if it

would

> > work. Will definitely do that as well.

> >

> >

[Guest guest]

yes it can be given to younger kids just a smaller dose. It really saved us when

my Savannah was going through all this anxiety like you mention, she was

probably 8-9 at the time.

valarie

mom to 3 w/cvid

> >>>

> >>> I want to make sure that I did not misrepresent that my NOT doing the

> > infusions

> >>> is the BEST thing for my son. It has been a ongoing journey to listen to

> > his

> >>> needs. He has IVIG from 3-10 years old every 3 weeks at his Drs. office.

> > We

> >>> started Sub Q at age 10 AFTER we did a trial off and retested him. ( he

> > failed

> >>> miserably) but.... he was not willing to go back to the IVIg and we had

> > moved to

> >>> Oklahoma and they gave us 1 option and that was to start subQ and I was

> > REQUIRED

> >>> to do it. His ANGER around infusions was mostly a panick about life in

> > general.

> >>> AS I said he is doing better and after my not doing it for 6 months

> > allowed him

> >>> to work through things and be ready for me to help him again. I am

> hoping

> > that

> >>> one day soon HE will be willing to take charge of his infusions but for

> > now that

> >>> is NOT AN OPTION even though I keep trying. He does take his own needles

> > out

> >>> after it has infused. Hope this helps. The message I wanted to share is

> > that

> >>> EACH child is unique and helping them find peace with their illness

> > starts early

> >>> and needs to be reevaluated over the years. It would have been nice to

> > have had

> >>> an EASY kid but I have NEVER had one. Both of my kids have had

> > significant

> >>> medical issues but they are both adopted and we had NO IDEA before we

> > adopted

> >>> them as newborns.

> >>>

> >>>

> >>> BARBIE

> >>>

> >>>

> >>>

> >>>

> >>> ________________________________

> >>> From: Terri Cahill <terric2000@>

> >>> PEDPID < >

> >>> Sent: Sat, April 30, 2011 7:50:09 PM

> >>> Subject: RE: Re: Toddler/Preschooler SCIG Infusions

> >>>

> >>>

> >>> Hi All ~ You guys are all amazing to me in a very positive way. I am

> > going

> >>> through so many similar issues too. My son has something different and

> > goes

> >>> through a little different of a procedure, but maybe some will apply...

> >>>

> >>>

> >>> My son is 3 1/2 (has XLA) and he has been receiving IVIG's from Riley's

> >>> Childrens Hospital for a little over a year. this is a 2 hour drive for

> > us.

> >>> 1/2 way down if our van TV wasn't working and he realized where he was

> he

> > would

> >>> beg me to turn around because they hurt me there - for 1 solid hour he

> > begged

> >>> me. Then, it slowly got better, but he would realize it when we got to

> > the

> >>> parking garage and through the whole procedure of parking, he would beg

> > me not

> >>> to go in and go home because " they hurt me in there " . It is nice having

> > someone

> >>> else put the needle in him for the IV, as I need to be the person on

> " his

> >

> >>> side " . We used to have to wrap him in a blanket and 4 of us hold him ~

> he

> > is

> >>> really strong, moves quickly, etc. But the time before last, it was his

> >>> " hospital girl " distracting him with a video (i will explain her in the

> > next

> >>> paragrah), the nurse putting in the IV and the nurse holding his arm...

> I

> > was

> >>> able to stand and be there for him if and when he needed me.

> >>>

> >>>

> >>> Baxter sent us a kit for children that teaches (the parent) about role

> > play and

> >>> different options to do with it. They sent us a teddy bear and an entire

> > kit to

> >>> perform an IVIG (less only the metal needle)... so he went back and

> forth

> > for

> >>> quite a while, looking at it, not looking at it, then playing with it,

> we

> > got to

> >>> the point where we are now even doing IVIG's on our Great Dane (ha, ha).

> > Now, I

> >>> notice several days before he is due for his next IVIG (every 4 weeks),

> > he gets

> >>> his kit out. He does not know when he is getting the IVIG as I never

> tell

> > him

> >>> when... his body just knows and he gets the kit out. He has done this

> for

> > 3

> >>> months in a row now. In reveiwing this kit there is an age appropriate

> > book

> >>> that refers to this kid (in the story) as his " hospital girl " , well she

> > is a

> >>> " Child Life Specialist " . I called the Childrens Hospital and sure

> enough,

> > they

> >>> have one for their in-patient and out patient. Since she has been with

> > him for

> >>> 3 or 4 months now, it has been even better. She totally " distracts " him

> > during

> >>> the " procedure " time and brings him things (toys), plays with the Ipad,

> > games

> >>> and video's. It is the person in the hospital that " belongs to the

> > hospital "

> >>> but doesn't hurt him... she is his alli and I am his comforter. It is

> > working

> >>> real well. She started to do the role playing with him and he didn't

> want

> >

> >>> nothing to do with it with her. Maybe we will try again, we will take

> his

> >

> >>> lead.

> >>>

> >>>

> >>> My son had a speech delay, but I think that development was only on the

> >>> backburner because he felt so bad all his life and now he is catching up

> > quite

> >>> fast. He seems to be fine mentally and ahead on his learning. But,

> >>> behaviorally we seem to be entering into a bad temper tantrum phase for

> > his age,

> >>> I think it is both his " life experiences and his age " . We were at the

> > store

> >>> yesterday and my husband got to see first hand the new tantrum as he

> > stood in

> >>> the isle, clinched his fists, his face shook slightly, got slightly red

> > as he

> >>> let out a blood curtling scream. I said, Oh my. For quite a whie I

> > couldn't

> >>> figure out if he was acting out or if it was just his age, sometimes I

> > think it

> >>> is a little one way and a little the other. My son needs an outlet for

> > his

> >>> anger, frustration, etc. I think I need to do some checking with his

> > Child life

> >>> specialist and see if she has some ideas for my son. Maybe some new

> > physical

> >>> exercises such as pounding nails into a board of wood, maybe not age

> >>> appropriate, but I think you might understand what I mean. Something

> that

> > he

> >>> can really get his hands on and not have to " think " about, just do.

> Maybe

> > even

> >>> you all can help me think of some things.

> >>>

> >>>

> >>> I have to say I have had the EXACT same situation with our " numbing

> > cream " . I

> >>> will have to check that out too. My sister is an OB/GYN in Ohio and she

> > said

> >>> there are 2 strengths of numbing cream, might want to ask the Dr. about

> > that

> >>> too. Not sure is if it is too strong for the children. I was told that

> > the

> >>> numbing cream peaks at 1 hour, so I and the nurses work around when I

> put

> > the

> >>> cream on. I am sure you do, but do you also put a plastic type cover

> over

> > the

> >>> numbing cream while it is doing it's magic? Sorry that I am not as

> > technical as

> >>> you guys, I am so, still learning.

> >>>

> >>>

> >>>

> >>> Sorry I wrote so much, didn't realize I had so much to type. I am even

> >>> surprised my fingers are working this late into the evening.

> >>> I am new to this group and I wanted to tell you that all of your words

> > that you

> >>> guys type help me too, in so many ways, thank you so much.

> >>>

> >>>

> >>>

> >>> Terri

> >>> mother of 3 year old with XLA

> >>>

> >>>

> >>>

> >>>

> >>>

> >>>

> >>> From: mother5590@

> >>> Date: Sat, 30 Apr 2011 18:44:48 -0700

> >>> Subject: Re: Re: Toddler/Preschooler SCIG Infusions

> >>>

> >>>

> >>>

> >>>

> >>>

> >>>

> >>> As you know with out kids it is ALL trial and error but our hearts keep

> > guiding

> >>> us as they morph and transform to their greatest potential. You will

> > figure it

> >>> out.

> >>>

> >>> BARBIE

> >>>

> >>> ________________________________

> >>> From: April <n2katz2003@>

> >>>

> >>> Sent: Sat, April 30, 2011 6:18:26 PM

> >>> Subject: Re: Toddler/Preschooler SCIG Infusions

> >>>

> >>> I will give the Immunology NP a call and see if they have some sort of

> > play

> >>> therapy. We go to s Hopkins Children's and I know they are

> associated

> > with

> >>> Kennedy Krieger (my son goes there yearly in the Autism department since

> > he has

> >>> so many autistic tendencies, but tests just off the spectrum). So they

> > probably

> >>> have something I could use also. We are waiting for a call from the

> > Behavior

> >>> Therapy department at the moment so they might be the ones to talk to

> > about the

> >>> play therapy. I had not thought about this option, thank you!

> >>>

> >>> I also had not even thought about trying to cream on myself to see if it

> > would

> >>> work. Will definitely do that as well.

> >>>

> >>>