is IVIG a cure?

[Basilbeth]

my son is 5 1/2 years old and has PANDAS with physical and verbal tics and behavioral issues coming and going every few months. It is a very unpredictable situation. Should we consider IVIG to just get beyond this? I wouldn't call his case severe, more in the mild/moderate range. But waiting for puberty or to "grow out of this" seems like such a long, stressful wait with lots of consequences. Should we just start throwing money at the problem to rid him of this?

Thoughts?

I live in Madison, WI and there are no real specialists here in PANDAS so we may have to travel to Chicago or do lots of cajoling here locally with the medical community.

Thanks....I know many of you have already been down this road....

[mdmom]

I do not understand where the theory came from that kids will outgrow PANDAS/PANS. There are many children mentioned here that are well into their teens, some in their 20s who have not outgrown the disorder.

 

Get help now - your son has a good chance of recovery because of his age.

[Basilbeth]

I do not understand where the theory came from that kids will outgrow PANDAS/PANS. There are many children mentioned here that are well into their teens, some in their 20s who have not outgrown the disorder.

 

Get help now - your son has a good chance of recovery because of his age.

 

 

by "help" do you mean IVIG? we've seen plenty of doctors, some believers in PANDAS, some not. but the only tool we have that works some of the time is ibuprofen.

[PowPow]

go to one of the few pandas docs in the country. Dr k is relatively close to you. do you have family or friends on the east coast, by chance? there are a few docs here who have more to offer than just ivig!

[bulldog24]

How long has he been sick? I ask because of the NIH study. Its still recruiting

[AmySLP]

Just had a similiar post you may want to look at responses for...search IVIG for kids who respond to abx.

[EAMom]

my son is 5 1/2 years old and has PANDAS with physical and verbal tics and behavioral issues coming and going every few months. It is a very unpredictable situation. Should we consider IVIG to just get beyond this? I wouldn't call his case severe, more in the mild/moderate range. But waiting for puberty or to "grow out of this" seems like such a long, stressful wait with lots of consequences. Should we just start throwing money at the problem to rid him of this?

Thoughts?

I live in Madison, WI and there are no real specialists here in PANDAS so we may have to travel to Chicago or do lots of cajoling here locally with the medical community.

Thanks....I know many of you have already been down this road....

 

there are some studies you might consider, not sure if your kid would qualify (depending on symptoms, severity, length of PANDAS)but you could get a workup and treatment through the studies:

IVIG study: http://clinicaltrials.gov/ct2/show/NCT01281969

Azith. study: http://clinicaltrials.gov/ct2/show/NCT01617083?term=pandas&rank=4

 

does your son still have his tonsils? PANDAS docs seem divided on the usefulness of this (in general, Dr. Latimer would prob. rec. b-4 IVIG, Dr. K would not).

 

I would also throat culture family members to make sure you don't have carriers.

 

Also, what antibiotics is your son on? To me that would be a first line treatment...a good 4-5 mo. of full-strength antibiotics (preferebly augmentin or Azith), perhaps with T/A. Do NOT do T/A without good antibiotic coverage...and then re-evaluate.

 

In retrospect, I personally wish (for my dd) that we had done IVIG sooner...but realize it isn't a cure all (for most kids)...many kids end up needing a repeat (or several)IVIG's and also follow up antibiotics. My dd developed full-blown severe PANDAS at age 7.5 (she probably had it earlier, but symptoms were more low grade, and nobody ever bothered to throat culture her when she was sick, so we never even knew she had strep). She has had 3 HD IVIG's and has been on full-strength Azith since 2008. Dh and I plan to keep her on Azith until she is at least 18.

 

My dd still has her tonsils (they look small, but I have heard of many with "normal looking" tonsils that end up being quite diseased/infected, a nidus of infection) and I wonder if we should still pursue that (she is 12 now).

 

I think another thing to consider is if your son is just reacting to strep, or to many other illnesses (eg. viral fever). My personal feeling is if you child is strep only, you have a better chance of getting things under control with long term abs/TA. If your child reacts to many other things (like my dd does) abs alone is less likely to fix things.

 

The good thing is that you are at least aware of PANDAS. Things can go from so-so to bad to very bad if you don't even know about PANDAS (wondering why your child is going insane).

 

Anyway, the bottom line is that IVIG isn't the 1 time cure for most kids, and most kids also need to followup with long term abs (I'm talking years) to maintain the gains of IVIG. If you get a strep infection after IVIG, you can be back to square 1. If money is a concern, I would try to pursue things more likely to be covered first (abs, T/A, make sure there is no strep in household). In the meantime, (when enrollment comes along) get a healthplan that is more PANDAS friendly (likely to cover IVIG)...

 

I would also rec. a good workup with an immunologist, since if an immune def. is found, IVIG can be covered that way.

 

Also, be aware that even though DR. K is close, he has a reputation of not getting IVIG covered by insurance. It seems like some of the other PANDAS docs (even though further away) do a better job of getting insurance to cover IVIG...so it may be worthwhile to travel.

 

I would also warn you that the more excerbations your child has, the more likely PANDAS will become chronic. In one article Swedo said 3 exacerbations can lead to chronic PANDAS (which I suppose means less likely to respond to treatment, baseline change).

Edited August 26, 2012 by EAMom

[EAMom]

my son is 5 1/2 years old and has PANDAS with physical and verbal tics and behavioral issues coming and going every few months. It is a very unpredictable situation. Should we consider IVIG to just get beyond this? I wouldn't call his case severe, more in the mild/moderate range. But waiting for puberty or to "grow out of this" seems like such a long, stressful wait with lots of consequences. Should we just start throwing money at the problem to rid him of this?

Thoughts?

I live in Madison, WI and there are no real specialists here in PANDAS so we may have to travel to Chicago or do lots of cajoling here locally with the medical community.

Thanks....I know many of you have already been down this road....

 

by the way, I certainly wouldn't count on you kid "outgrowing" PANDAS...besides childhood runined (and family life ruined) you are risking a lifetime of mental illness.

 

Here is a study of some adult men with PANDAS (untreated since childhood). They weren't doing very well.

http://www.turkpsikiyatri.com/en/default.aspx?modul=article&id=592

Edited August 26, 2012 by EAMom

[Basilbeth]

How long has he been sick? I ask because of the NIH study. Its still recruiting

thanks for the response, he has been sick for over 1 1/2 years, since he was 4 years old.

[Basilbeth]

I have called Yale and they say he does not have severe enough symptoms to be accepted into the ivig study.

[LaurenK]

In my experience, IVIG induces remission. It does not cure.

[Agnes26]

FWIW, we did IVIG with Dr. K, and it was covered by insurance. No clue how or why, but it was.

[nicklemama]

I do not believe there is a cure. There are treatments that help induce remission. We did IVIG in May 2011. Our son was sick for 1.5yrs before diagnosis and we waited 7 months after diagnosis to do IVIG, some of which was waiting to switch insurance and some was waiting to see how much improvement we could get w/ long term abx. By the time of IVIG, our son was moderate in severity. We thought he was actually mild. We had no idea the amount of improvement we would see after IVIG. It was the way to go for us. DS is actually in a flare right now and on treatment dose abx but his symptoms in the flare are no where near what they were preIVIG. Go see Dr K.

[airial95]

A couple of points:

 

IVIG has helped some kids get better, but like Lauren and nicklemama says - it's a remission - not a cure. If you child catches strep again 6 months - or 6 years down the road, there's no guarantee that it won't come back. This is one of the factors that has kept us personally from actively pursuing IVIG in the past for our son. (He was dx at 2 years old, so his young age at the time was another). We were testing positive for strep on average every 6 weeks or so - over 20 times in less than 2 years. We didn't see the purpose in spending the time and $$ on IVIG until we got the chronic infection undercontrol. And we're getting there...and are reconsidering our position on IVIG or PEX.

 

As for the "out growing it at puberty" - I don't know the science behind that, but I think I remember several posters on here in the past noting that their kids symptoms got worse/changed during puberty itself. Can't say much more than that - considering my little guy was 2 at the time of dx, I always skimmed over that stuff thinking "we'll be better by the time he gets to puberty!" (knocking on copious amounts of wood!)

 

As for out growing it in general, I think that was/is an early theroy, I beleive even Swedo mentioned it in her early literature (don't quote me on that), but I think it also stems to PANDAS being considered the "rheumatic fever of the brain" - and rheumatic fever tends to decline in early adulthood. However, the challenge with our kids, in my personal-non-medical opinion is that if left untreated, the neurological effects become "normal" to them. Especially those affected young - their brains develop thinking that OCD is the "normal" way to think, almost like the OCD, ODD, and to some extent even the tics become "habits" that must be broken. In my case - I've now been told by two of our specialists/doctors that with my history of strep as a child (6-8 times per year) and clinical dx of OCD in adulthood, I likley had PANDAS as a child and the OCD is a result of the PANDAS being untreated. My theroy on it becoming "habit" (for lack of a better word) was confirmed by one of our therapists at Rothman who related that in young children, like my little guy, they develop so many new neural pathways each day, that they can become "wired" that way without early treatment and intervention - beyond the medical side of treating the PANDAS itself.

 

And finally, many folks (including myself) have seen symptoms get worse with each episode, as is the case with my daughter (dx last year). She flew under the radar because we everytime my son was positive, the whole family was tested - she often tested positive with no symptoms, but was treated for the positive throat culture. I would still consider her PANDAS mild - especially compared to my son - and if it wasn't for my son having a severe case, she'd likely still be undiagnosed. But her symptoms have gotten more severe with each episode. I think she is mild because she had very few -if any - untreated strep infections, unlike my son who went untreated for 6 months. She also tends to clear to 100% with a 15-30 course of abx and nothing more (some ibuprofen here and there as needed).

 

Just a few points to ponder...it's not an easy decision. But you know your child best.

[Basilbeth]

my son is not on antibiotics and only rarely tests positive for strep in the throat. he has not really ever taken long term antibiotics. the doctors (only mildly pandas friendly) state that since there isn't throat strep then why give him antibiotics?

but strep could be anywhere in the body, right? his ASO titers are ok....300's (initially), 200's, 100's.

but he gets into contact with some many bacterias/viruses/etc with friends and at school and at activities that I have no control over...and typically these illnesses or even just his immune system fighting off a virus without ever getting sick is all INVISIBLE activity! so frustrating. but this past month he had half of his body covered in poison ivy rash and became a neuropsychiatric mess. well duh on that one!

if most of what he likely comes into contact is any kind of bacteria/virus/toxin then how to know which antibiotic to be on long term??

are your kids getting strep cultures from anywhere else than their throats?

he still has his tonsils...they look ok. we have seen a fam pract, pediatrician, 2 ped neuros, one psychiatrist and now I plan to see a pediatric immunologist in about a month.

but I still feel like I am losing time by educating and trying to persuade all of these doctors that my son has a classic pandas case. they all think that ivig is not the way to go. they think i'm crazy when i suggest this. but it's just because no one is yet doing it here in madison. these are not pandas specialists. they are barely on board with pandas. they appease me, but don't give much knowledge or advice that seems worthwhile. I tend to know more about pandas than any of them! and they tell me so!

I may have to check on our insurance and have a phone consult or visit with dr. K in chicago.