RE: home nursing care ivig

[Guest guest]

Hi Dawn~~

Lacey has had her last two IVIG infusions at home. She gets Gammagard. She

only weighs about 20kgs and was getting 20gms of IVIG, but this last one they

started cutting her dose a little so she got 15gms. Both times the infusions

went great. They've gotten her IV in on the first stick both times, too, so

we've

had no complaints at all. It's so nice not to have to go to the day hospital

anymore!! I hope things go well for next time~~

Belinda

Lacey's mom, (16, CdLS, CVID, IVIG)

Pittsburg, CA

CdLS OSG: Featured Family of August 2001

[Guest guest]

> HELLO EVERYONE THIS IS DAWN AND I WAS WONDERING IF ANYONE HERE

RECEIVES

> IVIG AT HOME WITH A NURSE? WE HAVE A TENATIVE DATE FOR MITCHELL'S

SECOND

> POSSIBLE IVIG ON THURS. APRIL 8. WE ARE HOPING IT GOES WELL. HE

IS TO

> RECEIVE GAMUNEX. DOES IT TAKE LESS TIME? THE FIRST DOSE LASTED

ABOUT TEN

> MINUTES BECAUSE HE REACTED TO IT. THANKS SO MUCH FOR ALL YOUR

HELP. DAWN

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Hi Dawn!

My son Blake has been getting IVIG now for 5 yrs. Because he has had

some " bad " reactions to IVIG, he is not a candidate for home

infusions. We were told not only by the Drs. tending to Blake & the

Infusion company(they provide Blake's IV Antibiotics as well as his

enteral feeds & Lovenox), that we would never find a Nursing company

that would infuse IVIG to a person that has had any type of " severe

or moderate " reactions to the products. Mostly due to the fact that

the person may have a more sever reaction & freak the nurse out and

cause them to panic. This was reinerated by Blake's HomeHealth Nurse.

She come to our house 2 'xs weekly to chang the dressing on his PICC

Line that we are sooooo proud to say has now been in for 5 months!!!!

(He has already been through 8 ports & 1 Broviac, so we opted for the

PICC Line to keep him from having to be put to sleep if the line

needs to be removed).

Blake reacts immediately to the " PolyGam " brand of IVIG. From the

first cc of infusion, he has gone into anaphalactic reaction on this

one. he also had a reaction to Gammimmune N. He only receives

Gammagard.

Another reason the nurses will not infuse Blake is because of

how " often " his IVIG is infused. He gets it Bi-Weekly with 10gms

Gammagard in 10% solution. His max rate is 60 cc. hrly & it has to

be " worked up " to 60. He is premedicated with 25mg. IV Solucortef(he

can not receive Solumedrol nor Decadron due to his senory motor

problems and his Asperger's Syndrome(high functioning autism), and

25mg.IV Benadryl. He also receives 50mg IV Zantac. This has really

helped with his " tummy " issues. He has had less upset with the

premed IV Zantac(he has been getting this one for about a yr. now).

So, the besst I can tell you is to wait until gets use to

teh IVIG & his reactions settle down & you fell really comfortable

with a Nurse administering IVIG in your home. Especially at this

point where you are having to adjust to your child receiving such a

product to begin with. Then as time goes on & he does not react to

the IVIG & you get to the place where you feel it is time to infuse

home & eveyone on your son's medical team feels that they are ready

to help you make this transition, then GO FOR IT!!!!

S. In SC

Mom To Blake(CVID with complete T-Cell Dysfunction, Severe

Asthma,GERD,CAPD, intersensory mortor skills delays,ADHD,Asperger's

Syndrome,Severe Osteoporosis,Rare Blood Clotting Disorder........has

now entered Puberty!!!!..........My Adventure of a Lifetime........ &

Loving EVERY moment of it!!!!)

http://www.caringbridge.org/ca/blake

stop for a visit.....our door is ALWAYS open!!!

[Guest guest]

HI, is 14 and receives IVIG every three weeks for the last 8 years. Our

doc highly discouraged us from home care due to reactions has had in the

past and the quality of the home care in our area.

With that said I know many people who do home care and it is wonderful! I think

it depends on your area, the quality of nurses working for the home care and how

your child has responded to the IVIG. Ask the home care what they do for

reactions, how many kids do they see.............

It is not an option for us but I know people who have had great success! It

would be nice at home.

You could also try it and if it works great , if not then go back to the

infusion/hospital center.

le

[Guest guest]

le,

Will you e-mail me at home llkraft@.... I have a 14 year old

daughter and would love to talk to you about school issues

Lorri Kraft ( 14yrs CVID)

RE: home nursing care ivig

HI, is 14 and receives IVIG every three weeks for the last 8 years.

Our doc highly discouraged us from home care due to reactions has had

in the past and the quality of the home care in our area.

With that said I know many people who do home care and it is wonderful! I

think it depends on your area, the quality of nurses working for the home

care and how your child has responded to the IVIG. Ask the home care what

they do for reactions, how many kids do they see.............

It is not an option for us but I know people who have had great success! It

would be nice at home.

You could also try it and if it works great , if not then go back to the

infusion/hospital center.

le