Can I please ask some questions about IVIG?

[SSS]

And they seem incredibly cheap. There is one 30 minutes away from me. How nice would that be. I am sure my DAN Dr. would write the prescription for IVIG. I am also thinking of calling a specialist (Dr. K?) for a phone counseltation just to get another opinion.

They quoted me: around $2,000 for the product itself- ballpark, depending on prescription, I mentioned Gamauex (sp.?) high dose. They said 1 day, 5-6 hours.

$90. for first 2 hours, $45. for every hour thereafter. Yes, they take 1st timers, have RN's who do this all day long, and are equipped to handle allergic reactions.

Has anyone ever used them?

And, why is a 2 day dose considered 'better'?

I know I have a lot to learn, perhaps this is where a phone consultation with Dr. K would come in handy, although my DAN Dr. does treat PANDAS patients...

Thank you very much-

Sarah &

Samantha 5

P.S.

I am looking into IVIG because although we have seen relief with antibiotics, I'd say we are at...70%? And, I don't think we can keep up this dose of antibx. much longer. I am 99% sure she doesn't have lyme. Have not checked for myco. P.

[peglem]

The 2 day infusion is so they can do a slower drip, which is supposed to lessen side effects (I think). My daughter gets infusions every 3-4 weeks. When we started, we did 2 day infusions. After the 5th one or so, we decided since she was handling them so well, that we'd try doing it all in one day. She's does fine with doing it all in one day and it sure does make life easier! We do 1.5g/kg and for my daughter that's @ 75g total.

[formedbrds]

The slower the drip and the smaller IVIG volume per day = less side effects. This explains the two day plan. Younger children have fewer side effects than older children and adults. Ask for saline drip with it to minimize side effects even more.

[SSS]

Thank you very much.

The price quote I received was for 30 grams...so, this might cost more than anticipated...but so close to home...

Of course, I want to make this as easy on her as possible. She gets very frightened :-(

Sarah &

Samantha 5

I also am going to line up a 1 hour phone consult with a PANDAS expert, to get another opinion.

[eljomom]

S&S--Just curious who you are doing the 1 hour phone consult with?

[SSS]

I am leaning heavily toward Scott Smith in NJ.

I also want my husband on the line, he needs to hear some things, too.

 

ETA: I am also thinking of Dr. K, haven't been able to get a hold of their office yet. If anyone has any advice for me, I am all ears!

Edited February 1, 2011 by S & S

[eljomom]

Wow---so is Scott Smith a pandas expert? Does he deal with pitand? IVig, etc.?? Didn't know he did phone consults...keep me posted!

[SSS]

Hi- he can't prescribe/give treatments, of course, until seen in person, taking on the patient-

What I want to do is pick his brain, have him give me his opinions...present my case, get his take.

So yep, have heard excellent things about him!

Be happy to let you know how it goes :-)

[SarahJane]

You can email Dr. K thru his web site (he's really good about getting back quickly). Then he'll set up a call. You send med records prior to the call. He'll ask questions & you can ask questions.

[melanie]

Hi Sara im in NJ and have been treating my son with IVIG for 1 yr pmme if you need any help .

 

Melanie

[Dedee]

For those of you doing the IVIG, are you doing it in an Infusion Center, Hospital, or Doctors Office? I have heard varying opinions on where it should be done. I would love to hear from the experts. Thanks.

 

Dedee

[peglem]

For those of you doing the IVIG, are you doing it in an Infusion Center, Hospital, or Doctors Office? I have heard varying opinions on where it should be done. I would love to hear from the experts. Thanks.

 

Dedee

We do ours at an outpatient treatment center at a children's hospital. But that's only because of my child's special needs. We have not tried it at home simply because I think it would be difficult to do if she had the run of the house. I think the most important thing to consider is the expertise of the staff.

[Dedee]

I have no doubt that my daughter would need to have some sort of sedation. She had to be sedated just to have her blood drawn. When it comes to anything medical she becomes absolutely hysterical. She has had a broken arm, broken leg, and hernia surgery in her seven years so she has learned that nothing good comes from hospitals or health care professionals (even though I am a nurse). So she has learned to fight like a tiger if they try to even touch her. It's not pretty.

 

Dedee

[melanie]

We do it at home

[peglem]

I have no doubt that my daughter would need to have some sort of sedation. She had to be sedated just to have her blood drawn. When it comes to anything medical she becomes absolutely hysterical. She has had a broken arm, broken leg, and hernia surgery in her seven years so she has learned that nothing good comes from hospitals or health care professionals (even though I am a nurse). So she has learned to fight like a tiger if they try to even touch her. It's not pretty.

 

Dedee

We have to use valium to even get her into the building. It works though! My daughter now has a port for IVIG which makes it so much easier. Of course you'd not want something like that unless you know its going to be needed frequently.