Ok, you all win!!

March 18, 2006

Dale & -

They had said that they only give the IVIG

> if there is a problem..........do your kids just get it every time,

> all the time? Curious.

I suspect meant Benadryl in this sentence, not IVIG - ,

correct me if I'm wrong here - but did you intend to say Benadryl? If

you did - the answer to that question is - yes, my kids get benadryl

every single time. While my kids don't have the awful reactions, I've

always been told we premed when doing Ig via an IV - when doing SCIQ -

it's not as necessary.

, as for your other question - when to tell - I think only you

know that, and it depends on personality. I would never tell Charlie a

week before, because, well, he's prone to anxiety, where as I would tell

Kate days in advance, because she needs to be prepared. I do have one

question for you - Are you doing both kids together the first time? If

so, I'd suggest rethinking it, or asking the doc to rethink it. First,

I think it should be quality one on one time, and second, it's

overwhelming enough the first time with one, I would not do two if at

all possible. Personally, I wouldn't do their first infusions even in

the same day. It's an emotionally draining day, and if there was a

reaction, I'd hate to see you split in two at the infusion center, or

even follow up at home - if someone got a delayed headache, it would be

difficult to manage that with two kids for the first time. I see no

reason why it couldn't be done a few days a part, and then get them on

the same schedule if you can.

Best to you, and your kiddos.

Dayna

Re: Ok, you all win!!

osdbmom wrote:

> Thank you. That helps some. They had said that they only give the IVIG

> if there is a problem..........do your kids just get it every time,

> all the time? Curious.

Some kids get an additional dose if there's trouble (infection), but as

far as I know that standard treatment is a regular infusion on a regular

basis. In fact, Katy was only allowed to deviate by 2 days earlier or

later so that her body could keep the most therapeutic level possible.

Several years ago almost every got IVIG every 4 weeks. But since then

the half-life has been documented to be 21 days, so that means that

after 21 days the supply goes down. Different doctors do different

things - some start at 4 weeks and move to 3 only if necessary -- some

start at 3 weeks and at some point try 4. Some kids have enough IgG of

their own to spread it out further -- but that's generally not the case.

In the non-pid community, IgG is given for specific illnesses -- but as

far as I know that's not the recommendation for PID. Our goal is to

prevent infections from getting started and stay on a regular dose long

enough to actually get healthy and strong and be able to have a life. I

don't see any reason to treat then back off until you have to treat

again. That sounds really peculiar to me and sounds like it would

defeat the purpose in the first place. Either a child needs IVIG or

they don't.

, I would question whoever told you that and ask them their

reasons. I would want a really good answer to that before you start.

Call IDF at 1-8000-296-4433 and talk to them or ask your doctor to talk

with the Consulting Immunologist program at 1-877-666-0866. Now, they

may have intended to say that they will administer the IVIG and then

check their blood levels and see when they need the next dose. That

would be reasonable -- but to wait until they are sick -- that sounds a

little fishy. So ask questions!!!!!

In His service,

Dale

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March 19, 2006

I sent a post last night but dont see it, unless I am just flaking out

again, YES YES YES I meant benedryl, I even reread it and to me, that

said benedryl!!how dumb can I get!!!Thank you for thinking for me,

Dayna, and Dale, I am so sorry for the confusion!!I cant imagine what

you must have been thinkning with my nonsense.

not on long today, getting ready for the girls' baptism tonight!! I am

so excited, and no one is terribly sick today, and the sun is shining.

I sure hope I didnt write anything dumb again that I am not seeing!!!LOL

valarie

March 19, 2006

osdbmom wrote:

> I sent a post last night but dont see it, unless I am just flaking out

> again, YES YES YES I meant benedryl,

Hey one time I sent a personal note to my counsin to this group -- we

all got a lot of laughs!

It's okay. I'm actually VERY, VERY glad that your doctor was not

suggesting such a thing.

About Benadryl -- we found out that Katy was allergic to Benadryl and so

we did the infusions without any premedications. Sometimes she would

take a Tylenol if she started feeling bad during the infusion or if she

was already sick before starting. Your kids may or may not need

anything. A lot of parents like Benadryl because it makes their kids

sleepy -- it made Katy extremely agitated and out-of-control angry!

Hang in there -- and I hope it's a really special night for your family.

In His service,

Dale

March 19, 2006

>

> About Benadryl -- we found out that Katy was allergic to Benadryl

and so

> we did the infusions without any premedications. Sometimes she

would

> take a Tylenol if she started feeling bad during the infusion or

if she

> was already sick before starting. Your kids may or may not need

> anything. A lot of parents like Benadryl because it makes their

kids

sleepy -- it made Katy extremely agitated and out-of-control angry!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

~~~~

We use to pre-treat with IVI Solumedrol & IV Benadryl. Because of

the " bio-neurological " issues we slowly started weaning him off of

the pre-meds. First we changed the steroid to

Hydrocortisone....don't let any one tell you that these two steroids

are the same. The were as different as night & day with Blake. The

Hydro. was the milder & easier one for Blake. After his brand of

IVIG was changed from Polygam to Gammagard, we were able to DC the

steroid. Then we worked on the benadryl Since Blake is very allergic

to red dye it took a while to do the wean. We finally were able to

get 's company(the maker of Benadryl) to give us a 1 yr. supply

of Dye Free Benadryl(they " donated " it). We are now doing the

treatments with no premeds. We do not give Tylenol UNLESS his temp.

goes to 100.5. Then the Nurses call the Dr. he orders the Tylenol &

since I keep it on hand, then we give it. But Blake has never

needed Tylenol. We later did find that all of the " meanness &

agitation WAS from the benadryl!!!!)

(mom to Blake)

March 20, 2006

Valarie - also remember it is not uncommon for a patient to have a severe

reaction to the IVIG the first infusion. The body has been invaded by

bacteria for so long and that bacteria has had free reign. To introduce an

actual immune system (even if it is a passive one) to the bacteria causes

havoc. Patients have been known to go into anaphylaxis, th blood pressure

drops, blood pressure skyrockets, fever, tremors, chills, headache to the

point of a migraine, muscle aches, irritability. When this happens the

infusion stops and meds are given. A saline bolus usually is given to

dilute out the blood product in the system and eventually (though sometimes

not) the infusion is resumed.

The clinic should start the infusion at a very slow rate and work their way

up from there. Macey's first infusion the clinic started faster and said

" oh we'll stop and slow it down IF she has a reaction " .

It's not worth taking the risk (which with first ever infusions is almost a

given).

Start slow and work your way up every 15 minutes. Have a contingency plan

for being admitted to the hospital.

Good luck and I hope things stay good until then.

Ursula - mom to Macey (10,CVID) and (13)

http://members.cox.net/maceyh

Immune Deficiency Foundation http://www.primaryimmune.org

Pediatric PID email list

Modell Foundation http://jmfworld.org

March 20, 2006

My kids were always premedicated with Benadryl prior to IVIG-even with it,

ph still had one bad reaction-shaking and a quick spike in temp to above

102. With SCIG we still premedicate with Benadryl-one time I did not give

them their Benadryl prior to starting the SCIG infusion and they both got

horrible red blotches at the infusion site. And it bothered them/was

painful and itchy-I gave them the Benadryl and the redness and pain went

away. They have not had any other reactions to SCIG-

We did the boys first infusions together and have always done them together

ever since. It was just easier to do it all at once with the long drive we

had-not as long as some, but we drove an hour and a half to the hospital

and an hour and a half back.

Peace Be With You,

Pattie

Don't let your past dictate who you are now, but let it be a part of who you

will become.

_____

From: [mailto: ] On Behalf Of

Dayna S Fladhammer

Sent: Saturday, March 18, 2006 10:27 PM

Subject: RE: Ok, you all win!!