Re: We had our first IVIG today!!

[Guest guest]

We had done 2 PANDAS profiles from NeuroScience labs three months apart. My son's second was worse than his first. We faxed our PANDAS profiles to his office then had a phone consult with Dr. Gupta. His office emailed me a list of tests to get done and our ped wrote the script for them. He told us while we waited for the results to schedule our appt and IV but not to book plane tickets or make any reservations until the test results were reviewed by him to make sure there were no contraindications.

His immune results came back fine unfortunately because there is no way to get insurance to pay for it. From this point on, Dr. Gupta is going to have us set up with an agency in NY that will come to our home and infuse my son. We will probably have to come back to California in 6 months.

We've never had an MRI but based on his PANDAS profile our DAN basically said our son's brain is on fire and probably very inflammed. I guess he didn't order an MRI since we were heading out to CA for IVIG.

When we went to see Dr. Gupta at his office on campus, the guy there said my insurance should pay since we can go out of network, which is nice. One less expense. We spent more money than we should have at Disneyland.

Kerrie

Hi Kerrie,We are seeing Dr. Gupta in two weeks, for the first time. I was just wondering, if you guys saw him yesterday and received the IVIG today, do you do any testing prior to determine whether your son had PANDAS? I guess I'm thinking that Dr. Gupta should run a panel of tests first, determine if the child would benefit from IVIG before starting. But if you guys are from NY, how will you continue this therapy? I thought IVIG would need to be infused once a month for at least 6-8 months?I hope your son does well! Please keep us posted!By the way, is your insurance covering this therapy? Our insurance will pay for our office visit to see Dr. Gupta, but I doubt they'll pay for "experimental" IVIG infusions.We are very looking forward to our appt. with Dr. Gupta. My son has an abnormal MRI, with possible brain inflammation, so Dr. Gupta may be our key!

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

[Guest guest]

Hi Kerrie,

We are seeing Dr. Gupta in two weeks, for the first time. I was just

wondering, if you guys saw him yesterday and received the IVIG today,

do you do any testing prior to determine whether your son had

PANDAS?

I guess I'm thinking that Dr. Gupta should run a panel of tests

first, determine if the child would benefit from IVIG before

starting. But if you guys are from NY, how will you continue this

therapy? I thought IVIG would need to be infused once a month for at

least 6-8 months?

I hope your son does well! Please keep us posted!

By the way, is your insurance covering this therapy? Our insurance

will pay for our office visit to see Dr. Gupta, but I doubt they'll

pay for " experimental " IVIG infusions.

We are very looking forward to our appt. with Dr. Gupta. My son has

an abnormal MRI, with possible brain inflammation, so Dr. Gupta may

be our key!

>

> I appreciate all the advice I've gotten from the lists in reference

to

> PANDAS and IVIG. We made our trek from NY to CA this week to see

Dr. Gupta. We

> made a vacation out of it. We went to Knott's Berry Farm and

Disneyland.

> Yesterday we had our appointment with Dr. Gupta. He was

wonderful. Today my son

> had his infusion. It was a bit rough on him. The sitting around

and the arm

> board for 4 1/2 hours was not fun but we got through it.

>

> Hopefully we'll see some positives in the near future. We need

them

>

> Thanks again for all the support. I just wanted to let everyone

who's

> contacted me know that we made it here and we've started the

therapy.

>

> Kerrie

>

>

>

> **************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]

Hi Kerrie,

Thank you for your response. And please keep us update on how your

son responds to IVIG.

Best of luck,

>

>

> We had done 2 PANDAS profiles from NeuroScience labs three months

apart. My

> son's second was worse than his first. We faxed our PANDAS profiles

to his

> office then had a phone consult with Dr. Gupta. His office emailed

me a list of

> tests to get done and our ped wrote the script for them. He told

us while

> we waited for the results to schedule our appt and IV but not to

book plane

> tickets or make any reservations until the test results were

reviewed by him to

> make sure there were no contraindications.

>

> His immune results came back fine unfortunately because there is no

way to

> get insurance to pay for it. From this point on, Dr. Gupta is

going to have

> us set up with an agency in NY that will come to our home and

infuse my son.

> We will probably have to come back to California in 6 months.

>

> We've never had an MRI but based on his PANDAS profile our DAN

basically

> said our son's brain is on fire and probably very inflammed. I

guess he didn't

> order an MRI since we were heading out to CA for IVIG.

>

> When we went to see Dr. Gupta at his office on campus, the guy

there said my

> insurance should pay since we can go out of network, which is nice.

One less

> expense. We spent more money than we should have at Disneyland.

>

> Kerrie

>

> In a message dated 5/1/2008 6:52:31 P.M. Pacific Daylight Time,

> lvtoeat2@... writes:

>

> Hi Kerrie,

>

> We are seeing Dr. Gupta in two weeks, for the first time. I was

just

> wondering, if you guys saw him yesterday and received the IVIG

today,

> do you do any testing prior to determine whether your son had

> PANDAS?

>

> I guess I'm thinking that Dr. Gupta should run a panel of tests

> first, determine if the child would benefit from IVIG before

> starting. But if you guys are from NY, how will you continue this

> therapy? I thought IVIG would need to be infused once a month for

at

> least 6-8 months?

>

> I hope your son does well! Please keep us posted!

>

> By the way, is your insurance covering this therapy? Our

insurance

> will pay for our office visit to see Dr. Gupta, but I doubt

they'll

> pay for " experimental " IVIG infusions.

>

> We are very looking forward to our appt. with Dr. Gupta. My son

has

> an abnormal MRI, with possible brain inflammation, so Dr. Gupta

may

> be our key!

>

>

>

>

>

>

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

on family

> favorites at AOL Food.

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

>