RE: Brittany's IVIG in our hospital

[Guest guest]

Here it is day three and she still has the side effects from her IVIG.

Headache, stomache, and extreme fatigue! Missed school today. Is this ever

going

to get better??

Janet, mom to Brittany, CVID, age 13

[Guest guest]

In a message dated 10/4/2004 12:29:00 PM Eastern Daylight Time,

uahollem1@... writes:

Janet - what rate was it run at? How much is she getting and what

pre-medications are they doing?

Premeds-solumedrol, benadryl, phenegan, motrin,zomig.

18 grams of Carimune

30cc hour x 15min

60cc hour x 15min

90cc hour x 15min

was supposed to get to 120cc untill gone but slowed it down due to her being

sick.

Janet, mom to Brittany, CVID, age 13

[Guest guest]

In a message dated 10/4/2004 1:15:02 PM Eastern Daylight Time,

uahollem1@... writes:

Are all the premeds IV? You could try hydration

afterwards by bolusing with 500 ml normal saline. That seems to help some

kids. Is it a 10% concentration? If so you may need to switch to a 5%

brand. just some ideas

all meds are except motrin. I did have them give her extra saline. In

Cleveland it was 10% this time it was 6%.

Do you think they should switch brands by now? This is her 6th time. She is

AGA-0 and Carimune is high in IGA. Although he doesn't believe this would be

the reason, I do! Even if this doesn't have anything to do with it changing

brands might still help her.

Janet, mom to Brittany, CVID, age 13

[Guest guest]

Janet - what rate was it run at? How much is she getting and what

pre-medications are they doing?

Ursula Holleman

mom to (11 yrs old) and Macey (9 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

IDF Patient/Family Handbook

http://www.primaryimmune.org/pubs/book_pats/book_pats.htm

/

[Guest guest]

I would try starting at a slower rate, about 15 then after 30 min bump to 30

ml/hr then wait another 30 min and top out at 60 ml/hr. Macey's max was

pretty much 50 ml/hr. Are all the premeds IV? You could try hydration

afterwards by bolusing with 500 ml normal saline. That seems to help some

kids. Is it a 10% concentration? If so you may need to switch to a 5%

brand. just some ideas

Ursula Holleman

mom to (11 yrs old) and Macey (9 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

IDF Patient/Family Handbook

http://www.primaryimmune.org/pubs/book_pats/book_pats.htm

/

[Guest guest]

Yes! It will get better. How are they treating your dd's side effects??

They give Rebekah a bolus of steroids to stop that infusion headache. Have

your called your doctor about this extended side effect?

Please tell Brittany that, once they get the treatment rates/dose/frequency

figured out, she is going to feel so much better! A year from now, she will

not even recognize herself; she will be so energetic and strong. This is

just a tough season in her life. But seasons change!

Pam

wife to (17 years)

mother to , 10, Hannah, 8, Rebekah, 5, and Leah, 3

Re: Brittany's IVIG in our hospital

Here it is day three and she still has the side effects from her IVIG.

Headache, stomache, and extreme fatigue! Missed school today. Is this ever

going

to get better??

Janet, mom to Brittany, CVID, age 13

[Guest guest]

In a message dated 10/4/2004 8:23:20 PM Eastern Daylight Time,

pmork@... writes:

Please tell Brittany that, once they get the treatment rates/dose/frequency

figured out, she is going to feel so much better! A year from now, she will

not even recognize herself; she will be so energetic and strong. This is

just a tough season in her life. But seasons change!

Pam,

Thank you! You have brought tears to my eyes.

Janet, mom to Brittany, CVID, age 13