Re: Kerrie, how is your son? Is anyone else going to see Dr...

[Guest guest]

Our IVIG cost $2700 and that was for 15 grams of Privigen and everything else. They charge for the saline and time there so It would vary a bit depending on your dose and time there.

I don't know how much its going to cost at home yet. I'll let you know when we find out.

We had sent Dr. Gupta our PANDAS profiles and he ordered

1) Serum-IgM, IgA, IgE, IgD, IgG1, IgG2, IgG3, IgG4

2) Antibodies to mumps, measles, rubella, polio, HIB and HHV-6

What does the ativan do?

Kerrie

I was on the CIDPUSA website and they have a whole section on IVIG and it states it could be 4 days, it could be a month before results are seen. I totally understand how you feel and the stress involved.Do you mind me asking how much was the IVIG with Dr Gupta? and how much is the home visit IVIG? My son is acting wierder everyday and my husband and I are about to loose it! He finishes his anti-biotics on Wed so on Friday I am taking him in for retest of PANDAS/OCD panel to see if there are any changes. I know I need that info to put pressure on Kaiser. Could you please post what blood tests you needed done before you went to see Dr Gupta? The only thing that is saving us is a prescription of ativan. That's the only way we can get my son to school. His teacher has about had it with him...sigh...THanks,

Wondering what's for Dinner Tonight? Get new twists on family favorites at AOL Food.

[Guest guest]

Hmm...that's odd. My mailbox hasn't been full. Not sure why else it would come back.

Insurance is paying a big fat zero since he can't be diagnosed with anything that is a covered diagnosis. He was only deficient in one area and you need 2 or more and there is nothing else there that they can write up to make it medically necessary.

I guess our 2nd mortgage is going to get bigger.

We haven't tried any drugs to help my son with school yet and I'm hoping we don't have to go there. If we absolutely have to we will but I'm hoping IVIG helps him go back to where he was a year ago. This time last year he was soaring!!!! Now he's at rock bottom.

Did you get an appointment with Dr. Gupta yet?

Kerrie

I tried to send you a private email Kerrie & it came back??Anyway thanks for the info..Is Insurance paying for some of that??When my son was mis-diagnosed with seizures a year ago one of the Neuros gave us a prescription for ativan. It seemed to be the only think that ever helped him!But it is not a good med to give kids long term, it can be addictive and have other side effects. It is a sedative..it makes Marshall relax. Alot of people with anxiety take it. So we have to give him 1mg in the morning before school and it helps with the anxiety and OCD at school. We definitely want him off of it..but his teacher at school is not being nice anymore. Marshall was a pretty normal,cooperative kid before all this and now he is spacey and does goofy stuff at school and she is loosing her patience! She gives me looks like..fix your kid!! I am trying!!I am praying you see some improvement with your son!!!

Wondering what's for Dinner Tonight? Get new twists on family favorites at AOL Food.

[Guest guest]

I tried to send you a private email Kerrie & it came back??

Anyway thanks for the info..Is Insurance paying for some of that??

When my son was mis-diagnosed with seizures a year ago one of the

Neuros gave us a prescription for ativan. It seemed to be the only

think that ever helped him!

But it is not a good med to give kids long term, it can be addictive

and have other side effects. It is a sedative..it makes Marshall

relax. Alot of people with anxiety take it. So we have to give him

1mg in the morning before school and it helps with the anxiety and

OCD at school. We definitely want him off of it..but his teacher at

school is not being nice anymore. Marshall was a pretty

normal,cooperative kid before all this and now he is spacey and does

goofy stuff at school and she is loosing her patience! She gives me

looks like..fix your kid!! I am trying!!

I am praying you see some improvement with your son!!!

>

>

> Our IVIG cost $2700 and that was for 15 grams of Privigen and

everything

> else. They charge for the saline and time there so It would vary a

bit depending

> on your dose and time there.

>

> I don't know how much its going to cost at home yet. I'll let you

know when

> we find out.

>

> We had sent Dr. Gupta our PANDAS profiles and he ordered

>

>

> 1) Serum-IgM, IgA, IgE, IgD, IgG1, IgG2, IgG3, IgG4

> 2) Antibodies to mumps, measles, rubella, polio, HIB and HHV-6

> What does the ativan do?

> Kerrie

>

> In a message dated 5/4/2008 12:00:53 P.M. Eastern Daylight Time,

> pudgeo9999@... writes:

>

> I was on the CIDPUSA website and they have a whole section on IVIG

> and it states it could be 4 days, it could be a month before

results

> are seen. I totally understand how you feel and the stress

involved.

> Do you mind me asking how much was the IVIG with Dr Gupta? and how

> much is the home visit IVIG?

> My son is acting wierder everyday and my husband and I are about

to

> loose it! He finishes his anti-biotics on Wed so on Friday I am

> taking him in for retest of PANDAS/OCD panel to see if there are

any

> changes. I know I need that info to put pressure on Kaiser.

> Could you please post what blood tests you needed done before you

> went to see Dr Gupta?

> The only thing that is saving us is a prescription of ativan.

That's

> the only way we can get my son to school. His teacher has about

had

> it with him...sigh...

> THanks,

>

>

>

>

>

>

> **************Wondering what's for Dinner Tonight? Get new twists

on family

> favorites at AOL Food.

> (http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)

>

[Guest guest]

I called Dr. Gupta on THurs and left a message. I am going to redo

PANDAS/OCD panel on Fri with neuroscience kit. So when I get those

results back I will know what I need to do! If his results are worse

or the same then I know I have to get IVIG for him. Do you give your

son any thing like coQ10 or grape seed extract? Just wondering..My

DAN! said I needed alot more than grape seed extract right now!

Have you seen the info on IVIG on the CIDPUSA website? It tells what

conditions are covered by insurance..and I don't think PANDAS is one

of them.Good Luck & hang in there!!!

PS. I also joined Yahoo group Pidped primary Immune group for kids

>

>

> Hmm...that's odd. My mailbox hasn't been full. Not sure why else

it would

> come back.

>

> Insurance is paying a big fat zero since he can't be diagnosed

with anything

> that is a covered diagnosis. He was only deficient in one area

and you need

> 2 or more and there is nothing else there that they can write up

to make it

> medically necessary.

>

> I guess our 2nd mortgage is going to get bigger.

>

> We haven't tried any drugs to help my son with school yet and I'm

hoping we

> don't have to go there. If we absolutely have to we will but I'm

hoping IVIG

> helps him go back to where he was a year ago. This time last year

he was

> soaring!!!! Now he's at rock bottom.

>

> Did you get an appointment with Dr. Gupta yet?

>

> Kerrie

>

>

> In a message dated 5/4/2008 11:09:11 P.M. Eastern Daylight Time,

> pudgeo9999@... writes:

>

> I tried to send you a private email Kerrie & it came back??

>

> Anyway thanks for the info..Is Insurance paying for some of that??

> When my son was mis-diagnosed with seizures a year ago one of the

> Neuros gave us a prescription for ativan. It seemed to be the only

> think that ever helped him!

> But it is not a good med to give kids long term, it can be

addictive

> and have other side effects. It is a sedative..it makes Marshall

> relax. Alot of people with anxiety take it. So we have to give him

> 1mg in the morning before school and it helps with the anxiety and

> OCD at school. We definitely want him off of it..but his teacher

at

> school is not being nice anymore. Marshall was a pretty

> normal,cooperative kid before all this and now he is spacey and

does

> goofy stuff at school and she is loosing her patience! She gives

me

> looks like..fix your kid!! I am trying!!

> I am praying you see some improvement with your son!!!

>

>

>

>

>

>

>

> **************Wondering what's for Dinner Tonight? Get new twists

on family

> favorites at AOL Food.

> (http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)

>

[Guest guest]

Sorry its PedPID..someone on this board recommended it..

> >

> >

> > Hmm...that's odd. My mailbox hasn't been full. Not sure why else

> it would

> > come back.

> >

> > Insurance is paying a big fat zero since he can't be diagnosed

> with anything

> > that is a covered diagnosis. He was only deficient in one area

> and you need

> > 2 or more and there is nothing else there that they can write up

> to make it

> > medically necessary.

> >

> > I guess our 2nd mortgage is going to get bigger.

> >

> > We haven't tried any drugs to help my son with school yet and I'm

> hoping we

> > don't have to go there. If we absolutely have to we will but I'm

> hoping IVIG

> > helps him go back to where he was a year ago. This time last year

> he was

> > soaring!!!! Now he's at rock bottom.

> >

> > Did you get an appointment with Dr. Gupta yet?

> >

> > Kerrie

> >

> >

> > In a message dated 5/4/2008 11:09:11 P.M. Eastern Daylight Time,

> > pudgeo9999@ writes:

> >

> > I tried to send you a private email Kerrie & it came back??

> >

> > Anyway thanks for the info..Is Insurance paying for some of

that??

> > When my son was mis-diagnosed with seizures a year ago one of

the

> > Neuros gave us a prescription for ativan. It seemed to be the

only

> > think that ever helped him!

> > But it is not a good med to give kids long term, it can be

> addictive

> > and have other side effects. It is a sedative..it makes Marshall

> > relax. Alot of people with anxiety take it. So we have to give

him

> > 1mg in the morning before school and it helps with the anxiety

and

> > OCD at school. We definitely want him off of it..but his teacher

> at

> > school is not being nice anymore. Marshall was a pretty

> > normal,cooperative kid before all this and now he is spacey and

> does

> > goofy stuff at school and she is loosing her patience! She gives

> me

> > looks like..fix your kid!! I am trying!!

> > I am praying you see some improvement with your son!!!

> >

> >

> >

> >

> >

> >

> >

> > **************Wondering what's for Dinner Tonight? Get new twists

> on family

> > favorites at AOL Food.

> > (http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)

> >

>

[Guest guest]

> > >

> > >

> > > Hmm...that's odd. My mailbox hasn't been full. Not sure why

else

> > it would

> > > come back.

> > >

> > > Insurance is paying a big fat zero since he can't be diagnosed

> > with anything

> > > that is a covered diagnosis. He was only deficient in one

area

> > and you need

> > > 2 or more and there is nothing else there that they can write

up

> > to make it

> > > medically necessary.

> > >

> > > I guess our 2nd mortgage is going to get bigger.

> > >

> > > We haven't tried any drugs to help my son with school yet and

I'm

> > hoping we

> > > don't have to go there. If we absolutely have to we will but

I'm

> > hoping IVIG

> > > helps him go back to where he was a year ago. This time last

year

> > he was

> > > soaring!!!! Now he's at rock bottom.

> > >

> > > Did you get an appointment with Dr. Gupta yet?

> > >

> > > Kerrie

> > >

> > >

> > > In a message dated 5/4/2008 11:09:11 P.M. Eastern Daylight

Time,

> > > pudgeo9999@ writes:

> > >

> > > I tried to send you a private email Kerrie & it came back??

> > >

> > > Anyway thanks for the info..Is Insurance paying for some of

> that??

> > > When my son was mis-diagnosed with seizures a year ago one of

> the

> > > Neuros gave us a prescription for ativan. It seemed to be the

> only

> > > think that ever helped him!

> > > But it is not a good med to give kids long term, it can be

> > addictive

> > > and have other side effects. It is a sedative..it makes

Marshall

> > > relax. Alot of people with anxiety take it. So we have to give

> him

> > > 1mg in the morning before school and it helps with the anxiety

> and

> > > OCD at school. We definitely want him off of it..but his

teacher

> > at

> > > school is not being nice anymore. Marshall was a pretty

> > > normal,cooperative kid before all this and now he is spacey

and

> > does

> > > goofy stuff at school and she is loosing her patience! She

gives

> > me

> > > looks like..fix your kid!! I am trying!!

> > > I am praying you see some improvement with your son!!!

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > **************Wondering what's for Dinner Tonight? Get new

twists

> > on family

> > > favorites at AOL Food.

> > > (http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)

> > >

> >

>

[Guest guest]

WOW!!! How much does your son weight??? Did they tell you how much the meds were and how much was office charges?

They quoted me $3000 for the Privigen and $800 for the infusion center. The girl on the phone said based on my son's weight Dr. Gupta would probably prescribe 20g and she based it on that. He only prescribed 15 grams and that made a big difference. Our Privigen ended up being $2250 and then the infusion center part only ended up being $481 because of time and supplies used. Our total was $2731, much better than $3800 but it still hurts

Kerrie

I called Dr Guptas office and made appt...was quoted $5500. for my sons IVIG...I'm getting ready in case Kaiser doesn't come through!!

Wondering what's for Dinner Tonight? Get new twists on family favorites at AOL Food.

[Guest guest]

I called Dr Guptas office and made appt...was quoted $5500. for my

sons IVIG...I'm getting ready in case Kaiser doesn't come through!!

> > > >

> > > >

> > > > Hmm...that's odd. My mailbox hasn't been full. Not sure why

> else

> > > it would

> > > > come back.

> > > >

> > > > Insurance is paying a big fat zero since he can't be

diagnosed

> > > with anything

> > > > that is a covered diagnosis. He was only deficient in one

> area

> > > and you need

> > > > 2 or more and there is nothing else there that they can write

> up

> > > to make it

> > > > medically necessary.

> > > >

> > > > I guess our 2nd mortgage is going to get bigger.

> > > >

> > > > We haven't tried any drugs to help my son with school yet and

> I'm

> > > hoping we

> > > > don't have to go there. If we absolutely have to we will but

> I'm

> > > hoping IVIG

> > > > helps him go back to where he was a year ago. This time last

> year

> > > he was

> > > > soaring!!!! Now he's at rock bottom.

> > > >

> > > > Did you get an appointment with Dr. Gupta yet?

> > > >

> > > > Kerrie

> > > >

> > > >

> > > > In a message dated 5/4/2008 11:09:11 P.M. Eastern Daylight

> Time,

> > > > pudgeo9999@ writes:

> > > >

> > > > I tried to send you a private email Kerrie & it came back??

> > > >

> > > > Anyway thanks for the info..Is Insurance paying for some of

> > that??

> > > > When my son was mis-diagnosed with seizures a year ago one

of

> > the

> > > > Neuros gave us a prescription for ativan. It seemed to be

the

> > only

> > > > think that ever helped him!

> > > > But it is not a good med to give kids long term, it can be

> > > addictive

> > > > and have other side effects. It is a sedative..it makes

> Marshall

> > > > relax. Alot of people with anxiety take it. So we have to

give

> > him

> > > > 1mg in the morning before school and it helps with the

anxiety

> > and

> > > > OCD at school. We definitely want him off of it..but his

> teacher

> > > at

> > > > school is not being nice anymore. Marshall was a pretty

> > > > normal,cooperative kid before all this and now he is spacey

> and

> > > does

> > > > goofy stuff at school and she is loosing her patience! She

> gives

> > > me

> > > > looks like..fix your kid!! I am trying!!

> > > > I am praying you see some improvement with your son!!!

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > **************Wondering what's for Dinner Tonight? Get new

> twists

> > > on family

> > > > favorites at AOL Food.

> > > > (http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)

> > > >

> > >

> >

>

[Guest guest]

I was quoted 40 grams of whatever they put in the IVIG...OUCH!!

>

>

> WOW!!! How much does your son weight??? Did they tell you how much

the meds

> were and how much was office charges?

>

> They quoted me $3000 for the Privigen and $800 for the infusion

center. The

> girl on the phone said based on my son's weight Dr. Gupta would

probably

> prescribe 20g and she based it on that. He only prescribed 15 grams

and that made

> a big difference. Our Privigen ended up being $2250 and then the

infusion

> center part only ended up being $481 because of time and supplies

used. Our

> total was $2731, much better than $3800 but it still hurts

>

> Kerrie

>

> In a message dated 5/6/2008 10:53:01 P.M. Eastern Daylight Time,

> pudgeo9999@... writes:

>

> I called Dr Guptas office and made appt...was quoted $5500. for my

> sons IVIG...I'm getting ready in case Kaiser doesn't come

through!!

>

>

>

>

>

>

>

> **************Wondering what's for Dinner Tonight? Get new twists

on family

> favorites at AOL Food.

> (http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)

>