Questions About IVIG - Henry's 1rst Infusion Is On Friday

[Guest guest]

My 9 yr old son, Henry, is starting IVIG on Friday. He is scared and has a few

questions. He wants to know if it will hurt and how will he feel afterwards.

I am a little nervous too. He is having it done at an adult infusion center

but the pedi clinical immunologist he sees is overseeing it and ordering all the

premeds, etc.

Any advice is greatly appreciated!

Thanks!

Betsy - mom to Henry - 9 yr old - CVID, Fatty Acid Oxidation Defect, Epilepsy

and Asthma

[Guest guest]

Betsy,

Hi. I know how you are feeling!!! I would ask them for some type of numbing

creme(emla, LMX) to put on his skin this really helped my daughter when she was

still doing her infusion by IV. I would take along either a music player or

portable dvd with headphones so that he could listen/watch. If you do not have

portable dvd then I would take some of your movies with you, if this is an adult

center they may not have any movies he likes. Anything to keep him busy is

good.(remember though that he may have IV in his hand so bring along things that

he can do one handed) My daughter always got bored. I know with my daughter

she would feel really tired during her infusion. She would sometimes nap, so you

may want to take his favorite pillow and blanket. She sometimes would get an

upset tummy. I always took 7up and pretzels for her to snack on if she got an

upset tummy. Usually right after it was done she felt great though lots of

energy. I will pray that all goes wells.

((((HUGS)))) to you all. , mom to Hope,6,undiagnosed immune

deficiency,dilated cardiomyopathy,pustular psoriasis,multiple food allergies,

receives SCIG weekly

Betsy Furler <bfurler@...> wrote:

My 9 yr old son, Henry, is starting IVIG on Friday. He is scared and

has a few questions. He wants to know if it will hurt and how will he feel

afterwards.

I am a little nervous too. He is having it done at an adult infusion center but

the pedi clinical immunologist he sees is overseeing it and ordering all the

premeds, etc.

Any advice is greatly appreciated!

Thanks!

Betsy - mom to Henry - 9 yr old - CVID, Fatty Acid Oxidation Defect, Epilepsy

and Asthma

[Guest guest]

We did the same as all of that, but we also hydrated very well for 2 days

before. Anything would drink, we gave him. See if the school will let him

bring a water bottle to school (ours did.) He brought a cooler and sat it by his

desk. The hydration helps to minimize any side effects and helps the veins to

stick out for a good poke. The Emla works wonders! does SubQ now, but we

started with IVIG. The worst is the waiting, keeping them occupied, and the poke

(and if you can get Emla, etc he won't really feel that!) Good luck, and keep us

posted.

@...: triplep_01@...: Tue, 8 Jan 2008

19:13:27 -0800Subject: Re: Questions About IVIG - Henry's 1rst Infusion

Is On Friday

Betsy,Hi. I know how you are feeling!!! I would ask them for some type of

numbing creme(emla, LMX) to put on his skin this really helped my daughter when

she was still doing her infusion by IV. I would take along either a music player

or portable dvd with headphones so that he could listen/watch. If you do not

have portable dvd then I would take some of your movies with you, if this is an

adult center they may not have any movies he likes. Anything to keep him busy is

good.(remember though that he may have IV in his hand so bring along things that

he can do one handed) My daughter always got bored. I know with my daughter she

would feel really tired during her infusion. She would sometimes nap, so you may

want to take his favorite pillow and blanket. She sometimes would get an upset

tummy. I always took 7up and pretzels for her to snack on if she got an upset

tummy. Usually right after it was done she felt great though lots of energy. I

will pray that all goes wells.((((HUGS)))) to you all. , mom to

Hope,6,undiagnosed immune deficiency,dilated cardiomyopathy,pustular

psoriasis,multiple food allergies, receives SCIG weeklyBetsy Furler

<bfurler@...> wrote:My 9 yr old son, Henry, is starting IVIG on

Friday. He is scared and has a few questions. He wants to know if it will hurt

and how will he feel afterwards.I am a little nervous too. He is having it done

at an adult infusion center but the pedi clinical immunologist he sees is

overseeing it and ordering all the premeds, etc. Any advice is greatly

appreciated!Thanks!Betsy - mom to Henry - 9 yr old - CVID, Fatty Acid Oxidation

Defect, Epilepsy and Asthma[Non-text portions of this message have been

removed]---------------------------------Be a better friend, newshound, and

know-it-all with Mobile. Try it now.[Non-text portions of this message

have been removed]

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[Guest guest]

Betsy -

If you want, he can call Charlie and ask him - Charlie is younger, 7, but

he's pretty verbal and has talked to two or three kids about it. I think

you still have my cell number - if you want to call - please do.

Dayna

_____

From: [mailto: ] On Behalf Of

Betsy Furler

Sent: Tuesday, January 08, 2008 7:00 PM

Subject: Questions About IVIG - Henry's 1rst Infusion Is On Friday

My 9 yr old son, Henry, is starting IVIG on Friday. He is scared and has a

few questions. He wants to know if it will hurt and how will he feel

afterwards.

I am a little nervous too. He is having it done at an adult infusion center

but the pedi clinical immunologist he sees is overseeing it and ordering all

the premeds, etc.

Any advice is greatly appreciated!

Thanks!

Betsy - mom to Henry - 9 yr old - CVID, Fatty Acid Oxidation Defect,

Epilepsy and Asthma

[Guest guest]

What everyone else said and...

The only ouch should be the blood draw/placement of the IV. After that, nothing

should hurt on that day.

Delayed adverse reactions (especially headaches) are common. One way to

minimize this is to make sure the rate is slow on infusion day. First infusers

(esp those with metabolic irregularies) do not do well when following industry

standard rate increases. Mine had aseptic meningitis after her 1st infusion.

Nudge the nurses, if you need to. Pay attention to chills/shakes. This is not

acceptable.

Feed the stress: sugar can help reduce emotional stuff. Gatorade, M & Ms, safety

pops, or whatever he loves and his body tolerates.

EMLA is by Rx and, for my kiddo, it works much better than LMX. But, in some

kids, it causes the veins to do weird things. For sq, we leave it on for 45

min. For IV, we leave it on for 20 min or they can't get the vein. Even for

this little amount of time, it takes the edge off. You can call the office and

see if they have this in stock--or ask for your own Rx.

If you use tagederm, crinkle the edges or it can be really difficult to remove

and stress the child out.

Warm packs 10 minutes before the stick. You'll need to ask for these.

DVD player is great! We use adult sized earphones that block out background

noise (got them at Target). Our kids pick up the stress in the room. I've

found that the earphones keep them from paying attention to the nurses and mom's

unintentional fear cues.

Praise, love, and toys. : )

Write down the brand, rate, lot number, exp. date, etc.

Good luck!

mom to Dani, cVID