Re: IVIG-PANDAS post

[Guest guest]

Oh, Judy, I am so sorry!!! I don't have any experience with PANDAS treatment to

offer. Has there been any improvement in his Lyme symptoms? I wish I had some

helpful advice to offer you. Hugs!! Stormy

________________________________

To:

Sent: Sun, November 14, 2010 10:55:07 AM

Subject: IVIG-PANDAS post

Hi ,

I just wanted to post that my PANDAS child had high dose IVIG last Friday, so

it's been about a week and a half, and his ocd and tics are actually worse.He

had a very difficult time geting the therapy as well,with a severe headache,

rash and constant profuse vomitting which required them stopping the IV and

giving him Zofran via IV.He had to stay in the hospital for 4 days.

My son has also been on two different antibiotics daily for over 13 months now.

I am extremely discouraged!!!I thought after all the abx and the IVIG I would

see some improvement , not a worsening of symptoms. He is also on tenex.

Have any other parents experienced this?

Thanks for any input

Hugs

judy

[Guest guest]

Is it possible to get the infusion sub cutaneously? Is there a specific product

that must be used for PANDAS?? Vivaglobin is a higher concentration and is

given through the skin and not into the blood stream and this cuts way down on

side effects. It can be given at home on a weekely basis or more often for other

medical conditions....it is worth asking about. Soon there will be an even more

concentrated solution called Hizentra.

[Guest guest]

Hi Judy,

I'm so sorry to hear what you and your child are going through. My PANDAS dd has

not had IVIG. However, I know several of the children of participants on the

Latitudes PANDAS/PITAND support board have. Many have described worsening of

symptoms before they improve - kind of turning back the pages as the body is

getting rid of " stuff. "

I encourage you to post your question there as well. Here is the link.

http://www.latitudes.org/forums/index.php?s=512dc869a7ff415521eb94d101136a95 & sho\

wforum=17

One recent poster said one of the IVIG nurses mentioned that sugar levels are

high in IVIG treatment (or something to that effect), so that sugar intake

should be limited after. From what I understand, dehydration can also be an

issue.

Kara

>

> Hi ,

>

> I just wanted to post that my PANDAS child had high dose IVIG last Friday, so

> it's been about a week and a half, and his ocd and tics are actually worse.He

> had a very difficult time geting the therapy as well,with a severe headache,

> rash and constant profuse vomitting which required them stopping the IV and

> giving him Zofran via IV.He had to stay in the hospital for 4 days.

> My son has also been on two different antibiotics daily for over 13 months

now.

> I am extremely discouraged!!!I thought after all the abx and the IVIG I would

> see some improvement , not a worsening of symptoms. He is also on tenex.

>

> Have any other parents experienced this?

>

> Thanks for any input

>

> Hugs

> judy

>

>

[Guest guest]

Hi Judy,

I found this recent post on Latitudes from someone going through a similar

experience and replies from others...I hope this helps you some...

http://www.latitudes.org/forums/index.php?showtopic=10258 & st=0 & p=86295 & hl=+turni\

ng%20+pages & fromsearch=1 & #entry86295

Kara

>

> Hi ,

>

> I just wanted to post that my PANDAS child had high dose IVIG last Friday, so

> it's been about a week and a half, and his ocd and tics are actually worse.He

> had a very difficult time geting the therapy as well,with a severe headache,

> rash and constant profuse vomitting which required them stopping the IV and

> giving him Zofran via IV.He had to stay in the hospital for 4 days.

> My son has also been on two different antibiotics daily for over 13 months

now.

> I am extremely discouraged!!!I thought after all the abx and the IVIG I would

> see some improvement , not a worsening of symptoms. He is also on tenex.

>

> Have any other parents experienced this?

>

> Thanks for any input

>

> Hugs

> judy

>

>

[Guest guest]

Hydration is important. Sometimes Benadryl or even steroids can help with the

side effects. Has the doctor ordered any of that? If you don't see an

improvement soon, perhaps a neurology consult is advisable.

Best wishes for a speedy recovery and a positive response.

Bonnie

>

> Oh, Judy, I am so sorry!!! I don't have any experience with PANDAS treatment

to

> offer. Has there been any improvement in his Lyme symptoms? I wish I had some

> helpful advice to offer you. Hugs!! Stormy

>

>

>

>

>

> ________________________________

>

> To:

> Sent: Sun, November 14, 2010 10:55:07 AM

> Subject: IVIG-PANDAS post

>

>

> Hi ,

>

> I just wanted to post that my PANDAS child had high dose IVIG last Friday, so

> it's been about a week and a half, and his ocd and tics are actually worse.He

> had a very difficult time geting the therapy as well,with a severe headache,

> rash and constant profuse vomitting which required them stopping the IV and

> giving him Zofran via IV.He had to stay in the hospital for 4 days.

> My son has also been on two different antibiotics daily for over 13 months

now.

> I am extremely discouraged!!!I thought after all the abx and the IVIG I would

> see some improvement , not a worsening of symptoms. He is also on tenex.

>

> Have any other parents experienced this?

>

> Thanks for any input

>

> Hugs

> judy

>

>

[Guest guest]

Judy,

So sorry to hear that he is so sick.  Hope things get better soon!

(mom w/OCD, 10.5  yo dd w/OCD)

IVIG-PANDAS post

Hi ,

I just wanted to post that my PANDAS child had high dose IVIG last Friday, so

it's been about a week and a half, and his ocd and tics are actually worse.He

had a very difficult time geting the therapy as well,with a severe headache,

rash and constant profuse vomitting which required them stopping the IV and

giving him Zofran via IV.He had to stay in the hospital for 4 days.

My son has also been on two different antibiotics daily for over 13 months now.

I am extremely discouraged!!!I thought after all the abx and the IVIG I would

see some improvement , not a worsening of symptoms. He is also on tenex.

Have any other parents experienced this?

Thanks for any input

Hugs

judy

[Guest guest]

Hi Stormy,

His physical lyme symptoms are just about gone, but the psychiatric ones are

still there

Thanks!

Hugs

judy

________________________________

To:

Sent: Sun, November 14, 2010 12:36:57 PM

Subject: Re: IVIG-PANDAS post

 

Oh, Judy, I am so sorry!!! I don't have any experience with PANDAS treatment to

offer. Has there been any improvement in his Lyme symptoms? I wish I had some

helpful advice to offer you. Hugs!! Stormy

________________________________

To:

Sent: Sun, November 14, 2010 10:55:07 AM

Subject: IVIG-PANDAS post

Hi ,

I just wanted to post that my PANDAS child had high dose IVIG last Friday, so

it's been about a week and a half, and his ocd and tics are actually worse.He

had a very difficult time geting the therapy as well,with a severe headache,

rash and constant profuse vomitting which required them stopping the IV and

giving him Zofran via IV.He had to stay in the hospital for 4 days.

My son has also been on two different antibiotics daily for over 13 months now.

I am extremely discouraged!!!I thought after all the abx and the IVIG I would

see some improvement , not a worsening of symptoms. He is also on tenex.

Have any other parents experienced this?

Thanks for any input

Hugs

judy

[Guest guest]

Thanks ,

I wasn't aware of this. I will look into it.

Hugs

judy

________________________________

To:

Sent: Sun, November 14, 2010 12:59:25 PM

Subject: Re: IVIG-PANDAS post

 

Is it possible to get the infusion sub cutaneously? Is there a specific product

that must be used for PANDAS?? Vivaglobin is a higher concentration and is given

through the skin and not into the blood stream and this cuts way down on side

effects. It can be given at home on a weekely basis or more often for other

medical conditions....it is worth asking about. Soon there will be an even more

concentrated solution called Hizentra.

[Guest guest]

,

thanks for your support!

Hugs

judy

________________________________

To:

Sent: Sun, November 14, 2010 6:32:47 PM

Subject: Re: IVIG-PANDAS post

 

Judy,

So sorry to hear that he is so sick.  Hope things get better soon!

(mom w/OCD, 10.5  yo dd w/OCD)

IVIG-PANDAS post

Hi ,

I just wanted to post that my PANDAS child had high dose IVIG last Friday, so

it's been about a week and a half, and his ocd and tics are actually worse.He

had a very difficult time geting the therapy as well,with a severe headache,

rash and constant profuse vomitting which required them stopping the IV and

giving him Zofran via IV.He had to stay in the hospital for 4 days.

My son has also been on two different antibiotics daily for over 13 months now.

I am extremely discouraged!!!I thought after all the abx and the IVIG I would

see some improvement , not a worsening of symptoms. He is also on tenex.

Have any other parents experienced this?

Thanks for any input

Hugs

judy

[Guest guest]

Judy,

My son has had 2 sessions of IVIG. I can totally sympathize with you, after the

first he had severe migraines that necessitated us to see a neurologist who put

him on propranolol, a beta blocker usually used for high blood pressure that has

helped tremendously. It was very stressful and upsetting. However, we did see an

improvement in his cough/sneeze tic that then started to relapse before the next

IVIG.

After this 2nd IVIG, he also experienced an increase in body and facial tics,

even though his cough/sneeze tic disappeared. The tics were so bad, he looked

like he had chorea and was falling out of his chair at school and had to be sent

home. I called his PANDAS doc, Dr. Bouboulis ,who put him on prednisone--6 days

of 40mg and then 2 days 30 mg, 2 days 20 mg, 2 days 10 mg. We are 3 almost 4

weeks out from the last IVIG, and even though the prednisone is helping, I do

still see a lot of tics that are 'old' tics--ones I haven't seen in approx. a

year. I guess they call this 'turning back the pages'. It is common.

Please don't be discouraged as Dr. B said that this is actually a good

thing--that it means your son is having an immunological response. He said he'd

be more concerned if there was no change at all. He said he sees 3 different

types of response to IVIG--1) child gets better and stays better. 2) child gets

better and then relapses before the next IVIG,3) child gets worse and then

slowly gets better.

It is important to hydrate well before and after IVIG. Dr. B has a protocol

where the child gets 40 mg of prednisone 2 days before, during and 2 days after

the IVIG. Motrin and Benadryl were given during the 2 days of infusion. Was your

son able to get this as well?

I also looked into the subcutaneous, but was told it has the same incidence of

side effects and I would prefer personally my child to be in a clinical setting

where he can be attended to medically.

Judy, I would strongly recommend you keep a daily log of your son's tics and

symptoms now post-IVIG. It helps to track different tics and improvements and

relapses because it is such an emotional time, it is hard to remember

accurately.

Dr. B does recommend every 8 weeks of IVIG as it has a half life of 21 days and

in 8 weeks the effect has diminished greatly.

Judy, I would like to take this opportunity to tell you that I did not mean to

offend you or anyone regarding the psychic post. I was not arguing, nor did I

say what someone said had no value--I said it was not relevant. I don't

appreciate having words put in my mouth. What I will apologize for is using the

word 'crap'. It probably was not a good choice. I did contact the moderators,

and in the future, I will contact them only if I have a problem.

As we are going through the same thing--please feel free to email me privately

at any time for support and possible answers as I know some other parents who

have gone through this and they can offer some support and comfort.

Terry

[Guest guest]

Wow Judy, $15K? that included the extra time in the hospital, right, not just

the IVIG?

Gee, if things were better already, you'd (and us) would be saying it was worth

every cent. So sorry he seems to be backsliding. I do remember that tongue

thrusting he used to do.

I really hope this is just an initial reaction to all that stuff in the IVIG,

like his body is fighting infection or something and that it calms down by end

of next week. And that you can say, " wow! his OCD disappeared! "

The stuff in the IVIG is antibodies (?) that targets strep right? (or I guess

any other illness that goes with that " G " part).

>

> HI Terry,

>

> Thank you for your support.

>

> I'm sorry your son went through a similar thing as mine.

>

> I don't know if I could bring myself to have my son go through that again when

I

> saw nothing but a worsening of symptoms.He was actually doing his " tongue

thrust

> tic " this morning , which I haven't seen in quite some time.

>

[Guest guest]

Oh Judy ((((BIG HUGS)))) <heavy sigh>

Praying for you, Hon.

BJ

>

> HI Terry,

>

> Thank you for your support.

>

> I'm sorry your son went through a similar thing as mine.

>

> I don't know if I could bring myself to have my son go through that again when

I

> saw nothing but a worsening of symptoms.He was actually doing his " tongue

thrust

> tic " this morning , which I haven't seen in quite some time.

>

> I would literally have to drag him there after what he went through and

> continues to go through.

> I spent weeks telling him this would help, and now he's worse than ever.

> My son cannot take prednisone because he has lyme as well, and it would worsen

> his lyme symptoms.My son did get the benadryl, but they only gave him motrin

> once, because he began vomitting after they gave it to him.

>

> I am trying to remain positive, but it's very difficult!

>

> Are you saying Dr. B recommends your child have IVIG every 8 weeks? I hope

not!!

> It wears off? I cannot afford another IVIG. Our insurance doesn't pay for

> it,(only a small portion of the hosp bill) and my son had to spend 4 days in

the

> hospital on top of the treatment.This one IVIG cost us approx 15,000.

>

> I hope your son gets better soon.Please keep me posted!

> Judy

>

>

[Guest guest]

My dd worsened for two or three weeks before she improved hugely after her

first ivig. Llike another poster, she is having multiple IVIG's and has had

3 already. She knows how much it has helped her so she is game for more,

though in the weeks following the first one she felt the same. If I could

give you one piece of advice, since only 1 IVIG is all you can get, it would

be to keep up the antibiotics for a good long time to prevent another

infection which could cause a setback. Give it time. If you had a high

dose (1.5g/kg or higher) then I expect you will see some significant gains

in the weeks and months to come.

[Guest guest]

Judy-

I can totally understand why you wouldn't want to do any more IVIG--the

astronomical cost and now the upsetting worsening of his symptoms--even ones you

haven't seen in forever. I know. It's only today, after a week of prednisone

that I see a major improvement in my sons horrible chorea-like tics that had him

falling over, banging into walls and being sent home from school because it was

not safe for him.

My son also has Lyme. I have read--and also was told by Dr. B, who has consulted

w/ Dr. , a top LLMD in our area, that to do a short burst of prednisone has

no effect on the Lyme, especially if one has been treating all along with abx.

In the old days, a patient would be treated with long term steroids for what was

initially diagnosed as rheumatoid arthritis or lupus or whatever ( actually

Lyme, the 'great imitator') and the immune suppression kept the body from

fighting the Lyme and they would get worse.

I have to say, the pre-treatment with the prednisone during the second IVIG and

2 days after made a big difference for us this time around. He sailed through

this IVIG and also after, had only one migraine that was easily treated with

Motrin. We did not do the prednisone pre-treatment with our first IVIG and my

son suffered horribly with classic migraines with aura that were very scary.

Then, 2 weeks out, after this last IVIG, we start with these horrific tics, also

ones we haven't seen in over a year, but more fierce, more clustered and

debilitating. I did not believe that the prednisone would help him, but it did.

Dr. B said to wait one week and he was right.

Judy, perhaps you and your doctor would consider a short burst of prednisone to

help get you over this hump? You mentioned that your son already has been

treated with long-term abx and it might be worth it. The relief my son has

gotten is worth it. Otherwise, make sure he is drinking plenty of fluids and

perhaps some Motrin will help some of the symptoms. Eventually, he will improve

and you will notice the difference. It took the brain a long time to become

inflamed and start showing symptoms--and it will take a long time to heal.

Dr. B does advise every 8 weeks to get the most out of the treatment and be

aggressive in our young children. I'll try to explain why, at least the way I

understand it:

Since the IVIG is non-specific gamma globulin--or IgG antibodies-- the body sees

these in the blood and says 'I don't have to make any right now'. Since it is

postulated the symptoms of PANDAS come from the body making antibodies that

attack the basal ganglia cells in the brain ( since those cells kinda look like

strep to the antibodies)--now the body isn't making those specific antibodies

and the brain cells have a chance to heal from the inflammation they have been

experiencing from the antibodies attacking them.

So-- the half life of any antibody in the blood is 21 days. And, the half-life

of the antibodies that are provided to the body during IVIG also have a

half-life of 21 days. This means that in 9 weeks, only an eighth of the

non-specific antibodies are left circulating in the body. Dr. B feels it is

important to continue IVIG every 8 weeks until the child goes into remission.

Some other specialists feel it takes 12 weeks for you to fully see the positive

effects of IVIG. This is where some of the specialists have their own opinion. I

think that is to be expected among doctors in general, and especially with

learning to treat a new disease.

I can't believe you have to pay so much. You actually might consider having it

done at home by an IVIG nurse--I understand it is much cheaper this way. I'm

sorry you are going through this emotional turmoil--it is hard. This last week

especially was very difficult up until today when we finally started seeing a

major cessation of symptoms with the prednisone. he has never responded to

prednisone in the past.

Let me know if I can help,

Terry

[Guest guest]

Thanks ,

He had 1.5.

Ok, I'm still confused. Why did your dd have 3? Why wasn't the one good enough?

sorry if I sound foolish, but does it " wear off " ? That's the sense I'm getting

Thanks

Judy

________________________________

To:

Sent: Mon, November 15, 2010 7:28:39 PM

Subject: RE: IVIG-PANDAS post

 

My dd worsened for two or three weeks before she improved hugely after her

first ivig. Llike another poster, she is having multiple IVIG's and has had

3 already. She knows how much it has helped her so she is game for more,

though in the weeks following the first one she felt the same. If I could

give you one piece of advice, since only 1 IVIG is all you can get, it would

be to keep up the antibiotics for a good long time to prevent another

infection which could cause a setback. Give it time. If you had a high

dose (1.5g/kg or higher) then I expect you will see some significant gains

in the weeks and months to come.

[Guest guest]

>

> My question is , do any kids need just one treatment, or do all of them need

> more?

I think there is a subset of kids, when caught early--who go into remission with

just one IVIG. A lot of kids need more than one. Every child is different.

> I'm also wondering about the prednisone.My son has been complaining of

headaches

> still, and nausea. I'm wondering if they are migraines because they are

> hereditary and my mom and myself have them with the aura's, or if they are

from

> the IVIG, or the lyme??

My son had minor cluster migraines before the IVIG. After the first IVIG he had

recurring, awful, intractable migraines with nausea and vomiting that were

requiring around the clock Motrin, Fioricet and Tylenol. Dr. B suggested we see

a neurologist, who then put him on propranolol, a blood pressure med with low

side effects that is used for migraine prevention and within a week we saw

results. I think the IVIG might bring out the propensity for migraines. Yes, the

prednisone was prescribed to prevent the migraines. Unfortunately, I'm sorry but

it does sound like your doc might be inexperienced--I'm sure Dr. B made mistakes

when he first started out and that's how you learn. The protocol he follows is

40 mg pred 2 days before IVIG, as well as the 2 days during IVIG and the 2 days

after IVIG. Hydration is the key--not only for the pt. to drink, but the

infusion must be done slowly with plenty of IV hydration and I believe with only

saline. If a dextrose type drip is used with the IVIG--it can make the child

sick. The Lyme question you will have to ask Dr. .

> I think I might consider the home nurse, but he was so sick with the IVIG they

> kept him for 4 days. Are you saying if he has the prednisone first, he

shouldn't

> get the headaches?

I think the home IVIG nurses are probably more experienced than your doc!

Because so many immunodeficiency disorders are treated with monthly IVIG--home

IVIG has evolved to become more affordable and easier on the patient. Some of my

own patients are IVIG nurses and we talk about this all the time. Perhaps you

can contact your insurance company about this or your doc. Since you see Dr.

--are you in the CT area? Just curious why you haven't seen Dr. B. His

office knows the right lab tests to perform to satisfy the insurance co, for

coverage. Also--IVIG done in his clinic was approx $3500. We were fortunate to

have to pay $700 out of pocket for the first time around and $250 this last

time--I guess the deductible was satisfied. He has 2 very experienced IVIG

nurses who manage a lot of PANDAS kids and they try to pre-empt any

complications.

I do think if he has the pred first he won't get the headaches--my son is living

proof.

I also think you should ask for a sliding scale pred burst now to help manage

all his symptoms now--the tics, the OCD, the separation anxiety and the

headaches and nausea.

> Sorry that I'm so confused, but my doctor that administered the IVIG did it

for

> the first time with my son. They never even told me to make him drink the 2

> liters. I had no idea.

> I went online and on the PANDAS forums trying to learn as much as I could,

but

> apparantly I didn't learn enough

It is very confusing and upsetting. It is very hard to watch your child suffer.

This is why I like this forum better. The community feels smaller . I was very

lucky to have another PANDAS mom that I met originally on this forum help

support me emotionally and with suggesions during this time. I also rely heavily

on Dr. B and his staff. Sometimes it is hard to get a return response right

away, but they always do respond and Dr. B is always about teaching and

explaining. It also helped me to google 'side -effects of IVIG " and prevention

of side effects of same. I think the Lyme issue complicates and confuses the

issue even more.

I'm glad to be of help, Judy.

Best-

Terry Rumas

[Guest guest]

Terry explained it very well. If you have other questions, please feel free to

ask.

<<Ok, I'm still confused. Why did your dd have 3? Why wasn't the one good

enough?

sorry if I sound foolish, but does it " wear off " ? That's the sense I'm getting

Thanks

Judy>>

[Guest guest]

Oh, Judy. I can't imagine anything more heartbreaking than if you went through

that for nothing. (

Hugs,

BJ

>

> Hi Terry,

> Yes, my doctor is inexperienced. We saw Dr. Bouboulis and he refused to see us

> more than once because they don't take our insurance. We offered to pay out of

> pocket and he still said , " no " .He said he needed IVIG and than refused to do

it.

> He sent my doctor the prescription for the IVIG solution mix,suggested the

> tylenol and benadryl, but never mentioned about the drinking and the

prednisone.

>

> My doctor did the infusion over over three days, but I don't know if the IV

had

> the saline or the dextrose. He barely drank through the infusion because he

kept

> vomitting.

>

> I guess my main question is, if he doesn't get the prednisone, will it be as

> though he never got the IVIG, seeing that part was missing,or will it still

> work?

>

> thanks for all of your help:)

> Hugs

> Judy 

>

>

>

[Guest guest]

The prednisone is used to treat or prevent side effects from IVIG, so it's not a

matter of whether the infusion will help. Most side effects are self-limited,

but monitoring is necessary as there are rare more serious side effects. I hope

things get better soon.

Bonnie

>

> Hi Terry,

> Yes, my doctor is inexperienced. We saw Dr. Bouboulis and he refused to see us

> more than once because they don't take our insurance. We offered to pay out of

> pocket and he still said , " no " .He said he needed IVIG and than refused to do

it.

> He sent my doctor the prescription for the IVIG solution mix,suggested the

> tylenol and benadryl, but never mentioned about the drinking and the

prednisone.

>

> My doctor did the infusion over over three days, but I don't know if the IV

had

> the saline or the dextrose. He barely drank through the infusion because he

kept

> vomitting.

>

> I guess my main question is, if he doesn't get the prednisone, will it be as

> though he never got the IVIG, seeing that part was missing,or will it still

> work?

>

> thanks for all of your help:)

> Hugs

> Judy 

>

>

>

> ________________________________

>

> To:

> Sent: Mon, November 15, 2010 9:50:05 PM

> Subject: Re: IVIG-PANDAS post

>

>  

>

>

> >

> > My question is , do any kids need just one treatment, or do all of them

need

> > more?

>

> I think there is a subset of kids, when caught early--who go into remission

with

> just one IVIG. A lot of kids need more than one. Every child is different.

>

> > I'm also wondering about the prednisone.My son has been complaining of

> >headaches

> >

> > still, and nausea. I'm wondering if they are migraines because they are

> > hereditary and my mom and myself have them with the aura's, or if they are

from

> >

> > the IVIG, or the lyme??

>

> My son had minor cluster migraines before the IVIG. After the first IVIG he

had

> recurring, awful, intractable migraines with nausea and vomiting that were

> requiring around the clock Motrin, Fioricet and Tylenol. Dr. B suggested we

see

> a neurologist, who then put him on propranolol, a blood pressure med with low

> side effects that is used for migraine prevention and within a week we saw

> results. I think the IVIG might bring out the propensity for migraines. Yes,

the

> prednisone was prescribed to prevent the migraines. Unfortunately, I'm sorry

but

> it does sound like your doc might be inexperienced--I'm sure Dr. B made

mistakes

> when he first started out and that's how you learn. The protocol he follows is

> 40 mg pred 2 days before IVIG, as well as the 2 days during IVIG and the 2

days

> after IVIG. Hydration is the key--not only for the pt. to drink, but the

> infusion must be done slowly with plenty of IV hydration and I believe with

only

> saline. If a dextrose type drip is used with the IVIG--it can make the child

> sick. The Lyme question you will have to ask Dr. .

>

> > I think I might consider the home nurse, but he was so sick with the IVIG

they

>

> > kept him for 4 days. Are you saying if he has the prednisone first, he

> >shouldn't

> >

> > get the headaches?

>

> I think the home IVIG nurses are probably more experienced than your doc!

> Because so many immunodeficiency disorders are treated with monthly IVIG--home

> IVIG has evolved to become more affordable and easier on the patient. Some of

my

> own patients are IVIG nurses and we talk about this all the time. Perhaps you

> can contact your insurance company about this or your doc. Since you see Dr.

> --are you in the CT area? Just curious why you haven't seen Dr. B. His

> office knows the right lab tests to perform to satisfy the insurance co, for

> coverage. Also--IVIG done in his clinic was approx $3500. We were fortunate to

> have to pay $700 out of pocket for the first time around and $250 this last

> time--I guess the deductible was satisfied. He has 2 very experienced IVIG

> nurses who manage a lot of PANDAS kids and they try to pre-empt any

> complications.

>

> I do think if he has the pred first he won't get the headaches--my son is

living

> proof.

>

> I also think you should ask for a sliding scale pred burst now to help manage

> all his symptoms now--the tics, the OCD, the separation anxiety and the

> headaches and nausea.

>

>

> > Sorry that I'm so confused, but my doctor that administered the IVIG did it

for

> >

> > the first time with my son. They never even told me to make him drink the 2

> > liters. I had no idea.

> > I went online and on the PANDAS forums trying to learn as much as I

could, but

> >

> > apparantly I didn't learn enough

>

> It is very confusing and upsetting. It is very hard to watch your child

suffer.

> This is why I like this forum better. The community feels smaller . I was very

> lucky to have another PANDAS mom that I met originally on this forum help

> support me emotionally and with suggesions during this time. I also rely

heavily

> on Dr. B and his staff. Sometimes it is hard to get a return response right

> away, but they always do respond and Dr. B is always about teaching and

> explaining. It also helped me to google 'side -effects of IVIG " and prevention

> of side effects of same. I think the Lyme issue complicates and confuses the

> issue even more.

>

> I'm glad to be of help, Judy.

>

> Best-

> Terry Rumas

>

>

>

>

>