RE: Britts 3rd. IVIG HELP!!

[Guest guest]

Hi Janet,

I do not know if this will help or not but, I have a listing of Risks and

discomfort from IVIG treatment. These are risks are they relate to receiving

the

treatment in an adult and while pregnant.

Risk and discomfort from IVIG treatment

a. A chance of fever and chills during infusion

b. the possibility of headaches after infusion

per my handout, it is possible to treat/prevent the headache with tylenol

and/or benadryl. These medicines are also effective for the uncommon

fever/chill

reactions.

I do not know if this will help you at all, but thought I would pass it along.

There is a Pediatrician that chats online and will be online at 10 or 11 PM

central time. His web page is www.drgreene.com I have asked him questions

before on other subjects and found him to be knowledgble.

[Guest guest]

Janet - it does sound like a delayed reaction. Macey's had these several

times. Tylenol might help. We eventually went to Tylenol with codeine and

then on to Darvocet N-50. If she can get some sleep then she should wake up

out of it. Call the doc on call back and ask if she can have an

antihistamine like Benadryl. It will calm down the body and it will help

her sleep some. But call him first to make sure. We use an antihistamine

as a premed and have used it at home later also.

good luck. i hope she feels better soon.

Ursula Holleman

mom to (11 yrs old) and Macey (8 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

[Guest guest]

Janet,

It sounds like an infusion headache, possibly. Our doctor prescribes a

round of steroids to knock it out.

Rebekah gets them sometimes and they usually hit about 48 hours after the

infusion. They are very dramatic and painful. I guess I'd try the tylenol,

but if she isn't better, I'd call that doctor back!

I'm sorry that you are dealing with this!! I remember being terrified when

the first one hit.

Pam

mom to 4

Rebekah, 4, CVID and ??

Britts 3rd. IVIG HELP!!

She got the worse

headache ever and she threw up and she has the chills, and her whole body

aches. I called the Dr. and it was past closing time and I got the other Dr

that

was on call. He said not to worry and to give her tylenol and call her Dr.

in

the morning. Unless she got worse then take her to the ER. He said it is a

delayed reaction.

[Guest guest]

Hi Janet,

Sorry to hear this happened to Brittany.

My daughter has had delayed headaches, fever and body aches several

times now (no throwing up though) We have been using Advil. The

headaches have usually lasted about 3 days. Hope Brittany shakes this

faster!

Sandy

Mom to Riley (13, selective antibody deficiency, asthma, IVIG)

[Guest guest]

In a message dated 7/12/04 8:32:55 PM Pacific Daylight Time,

pmork@... writes:

Our doctor prescribes a

round of steroids to knock it out.

Hi Pam,

may be starting IVIG, so I'm asking questions!! Do they give Rebekah

the steroids during the infusion or send her home with them?? If they gave

before and after, they would also help possible allergic reactions, so that's

why I'm asking. Bri tends to get seriously bad headaches (in his non-IVIG

life), so I'm a bit concerned about that. They are easily controlled with Advil

but quite bad. Thanks for the info.

Sandi, Mom to , age 11. Immune deficiency, Tetrology of Fallot,

Pulmonary valve transplant, Mitral valve stenosis, severe allergies, chronic

ear, nose

and throat infections, asthma and Carnitine deficiency. Suspected Di

Syndrome.

[Guest guest]

How's Brittany this morning? I prayed for her last night.

Rebekah's headaches would often last several days, once they got going, but

they were never as severe as the onset headache was. But she certainly

threw up with them.

Pam

[Guest guest]

We premedicate with steroids and we have a prescription for steroids to use

if she develops a post-infusion migraine. Rebekah's first, oh, 8 infusions

were all awful! Supposedly, the steroids should knock the post-infusion

migraine out immediately. A couple of times it has. I think it is

important to catch the headache early rather than chase the headache several

hours after it starts. We've had the best results when we give the steroid

quickly. I'm sorry to say that advil/motrin hasn't touched the headache.

We were in the hospital during one of the post-infusion migraines and

morphine worked nicely. I wish we could get a prescription for a painkiller

to use along with the steroid. It's hard to see them suffer.

Pam

wife to (17 years)

mother to , 10, Hannah, 8, Rebekah, 4, and Leah, 3

Re: Britts 3rd. IVIG HELP!!

In a message dated 7/12/04 8:32:55 PM Pacific Daylight Time,

pmork@... writes:

Our doctor prescribes a

round of steroids to knock it out.

Hi Pam,

may be starting IVIG, so I'm asking questions!! Do they give

Rebekah

the steroids during the infusion or send her home with them??

[Guest guest]

from Dale, Mom to Katy, CVID, age 20

Janet, research has shown that headahces are very, very related to

speed of infusion. How many ml/hour are they infusing?

But some reactions are caused by the body just reacting to all the new

stuff being put into her body and her body fighting like crazy.

Benadryl really helps with that if she can take Benadryl -- Katy has an

adverse reaction to Benadryl. If these reactions continue and you are

slowing the speed , then your doctor may need to review the

possibilities and choose a different brand for her. They are all the

same -- yet totally different in that they have different pH, different

chemicals that wash the antibodies, different sugar content, and those

differences make it possible to tailor the IVIG brand to the person.

We had to change brands when Katy was just having terribly excruciating

headaches exactly 12 hours after the infusion. They would last for

about 36 hours if I remember right.

Your doctor MUST hear about these reactions and either he or you need to

report them to the IVIG manufacturer. If you need help securing that

phone number, let me know, or the pharmacy should be able to secure that

number for you.

My suspicion is that they are running the meds in too quickly, but I'll

wait to hear what speed they are using. But every person is different

-- what is fast for some people - is slow for others. I just know that

they started Katy off WAY TOO fast!

Hang in there. Eventually you'll find a place that is comfortable for

all - at least for a little while until new adjustments have to be

made!!! I know it's hard at the beginning because you see all the

complications that make you wonder whether you've made the right

decision. But, in a few months you'll get all these things worked out

and Bittany's body will start accepting the IVIG and she'll start

getting on with her life and this will all be behind you. There will

be a new normal!!! Katy feels flu-like for 2 days after every single

IVIG. But, it's better than being sick for the entire 28 days!!! And

she hasn't had a rip-roaring infections in years! Just some minor stuff

that responded to antibiotics. Yeah!!!

Hope she's feeling better today.

In His service,

Dale