IVIG - Does it work? We're headed that way after con with Dr K

[HT's Mom]

As many of you predicted, our conference with Dr. K has basically led us to commit to our first IVIG, hopefully next month. My DH is on the bandwagon 100% after hearing Dr. K call it a potential "cure", and I admit I am hopeful, but I would appreciate some input from members here. I'm a little afraid to ask and get discouraged, and recognize that those who are "cured" may not be on the forum as much, so those of you reading this may mostly be still struggling with symptoms, so perhaps answers will be biased in that direction. But, still, what are your stories? A search of the forum on IVIG is just too broad, as you can imagine.

 

Dr. K seems convinced that none of these kids get back to 100% with antibiotics alone. He says he has had an 85% success rate with IVIG, in terms of total disappearance of symptoms. He also says that he prescribes one year of abx afterward - I'm not clear on the science of how long kids are susceptible to reinfection causing PANDAS symptoms again - forever, or is it just a precaution?

 

My son is 16 - has anyone here had success at this age and older?

 

If IVIG is as effective as Dr. K claims, why are more parents not going that route (aside from the huge cost issue.)?

 

Sometimes I wonder if DS is maybe doing ok, and whether we need to go this far. But when I told him about it and we talked about scheduling, he wanted the earliest possible date, even though it interferes with some significant things like soccer games, tryouts, etc that he would ordinarily never agree to miss. This tells me how much he wants help, so I hope we are on the right track.

 

Any input and/or links to threads about the procedure is welcome!!

 

Thank you.

[ratlenhum]

My son did months of oral antibiotics, months of IM penicillin and 16 IVIG treatments. Behaviors were still there and his ASO and AntiDNase B titers were as high as ever. We finally decided to try homeopathy and within 9 months the majority of my sons PANDAS related issues were resolved and for the first time in 3 1/2 years his strep titers were in normal range.

 

So in our case, no, IVIG did nothing for my son but put his parents very deep in debt. I must say we saw some improvement around IV 5 and 6 but then it leveled off and never got any better, then while doing IVIG the things that improved got worse again.

[T_Mom]

HT'sMom-- There are many parents that would attest that IVIG worked wonders for PANDAS. As I am sure you know, if you search on IVIG and plasmapheresis "in general" you will find many internet references relating to the use of these treatments for autoimmune issues of all types.

 

Personally, we have not yet used IVIG, but I believe it may be around the corner. When you are "ready" there is no doubt--as in our case, we have to DO something.

 

Dr K asked us, 2 years ago now, if our child was "this way" at 20 would she be alright? I can whole heartedly say that if our child was "this way" still at 20 ... this younger d would be entirely non-functional, either in jail, or institutionalized. At this point, we know we have to try to help her back.

[butterflymom]

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Edited October 9, 2015 by tampicc

[TexasDad]

I'm happy to share with you our experience and take this opportunity to throw in an update our our DS16.

 

The first onset of our son's symptoms were the day before Thanksgiving last year. His neurologist wanted to nip it in the bud, so to speak, and went right to IVIg a week later. Today, just over four months, he is at 90-95% to his original baseline and continues to slowly improve every day. I just did an "assessment" with him before writing this.

 

From the outside, he looks and appears to be 100% normal, as what he is left with right now is very manageable for him. Currently, his PANDAS is not interfering with his normal activity at all. This is HUGE and an absolute miracle to us given how debilitating his symptoms were at onset.

 

Within, however, and everything that PANDAS does to their minds and emotions, he still deals with intrusive thoughts and periodic bouts of ADD. I mention this because I've learned how important it is to ask THEM how they feel and what they want to do for their own healing. They know where they are, how taxing it is, and what they're willing to do to get that healing. It's not always obvious to even us parents.

 

So, obviously a "thumbs up" from us. His next appointment with the neuro is in June and if there are any remaining symptoms/struggles, we will consider a second IVIg to see if that gets us to 100%.

[SSS]

I think a lot of parents do end up going the IVIG route.

I think I've read pert near every thread on this board about IVIG's (I'm a reader, and learned a lot going through older threads on here, too.)

My dd is only 6, but has been chronic with this a long time-

Antibiotics were beautiful Wows for us for 4 weeks- then backslide, tried different antibx., I only did a 4 day steroid because I wasn't comfortable doing it longer.

Because of testing, our issues, we went for HD-IVIG. We had re-exposure to strep week 5 post, set us 'off.'

I think the confusion (to me) is not whether IVIG is effective, per say, but more of how many? what exact dose?

My own DAN/PANDAS Dr. believes more frequent, lower doses- but my dd6 is not immune defiecent-nonetheless, he treats his other pandas patients more often with IVIG, every 2 months, once a month.

I have another pandas expert Dr. I consult with by phone frequently, he says I should do the next HD-IVIG right now. Dr. B is now saying every 8 weeks. Dr. K believes in 1 for the most part. But they all seem to believe in the IVIG.

I think it was SF mom who once said: It's such a personal decision. Depending on financial ability, insurance, how functional the child is to you, your comfort level. I am finding that statement very true.

We are doing 1 more HD-IVIG next week, and I am pretty darn sure that will be it. Then we wait, keep her protected, and hope for the healing. And I try to be patient.

Dr. K has been doing this a long, long time, with a very good reputation.

Best wishes---

[SarahJane]

We were happy with our IVIg but did lose most of the effects after what seems to be another infection. We are treating positive IgG mycoplasma pneumonia with Biaxin now...just finished 2 weeks/250mg 2ce daily & are seeing good results. Dr. K ordered another 2 weeks of Biaxin for us (and my husband also turned up positive IgG for myco p & is on 10days Biaxin). We may end up doing another IVIg eventually. But the results we saw from our first one were good. Our son was 6 in Nov '10 during his treatment & had been undx'd PANDAS for 9+ months (but he likely had early onset). Be aware that it did take 2 weeks for our good results from IVIg to emerge & we had 4 really good weeks. Then he had a pretty good flip backwards at 6.5 weeks & got mostly recovered from that & then at 16 weeks post-IVIg is when the myco p started it's issues.

 

One thing I would advise because I was advised to do this & didn't & wish I had. Run any additional tests prior to IVIg because you won't be able to run any until the 12 week mark or so. What I mean is that it'd be a good idea to at a minimum get pre-IVIg strep titers & mycoplasma pneumonia IgM/IgG. My son doesn't run high titers, so those weren't as important to me (we have the temporal relationship with strep & the behaviors vs. high titers). But the myco p is a biggie since I know his IgG level is high now, but I don't know what it was then. Dr. K usually will only run an immune panel to help with IVIg brand determination. You may be able to get your local ped to run anything else and pull it from the same blood draw. And if you are considering Lyme tests, do them now too. (We haven't done Lyme testing, but may do it in the future...my hubby & I might test ourselves first.) I will say that I wasn't as worried about the myco p too because I figured the zithromax would get it if it was there...but then it didn't & we've switched to Biaxin. And even the myco p test we ran recently was at my request thru my ped because he had to write the lab order locally & K had ordered strep titers & circulating immune complexes only. If I hadn't added the myco p test, I still wouldn't know & would likely have our 2nd IVIg already scheduled vs. getting the chance to try to clear this infection.

 

We were in a significant 2nd exacerbation when we chose IVIg. Didn't seem like we had a choice since we were already seeing antibiotics not work when we treated his regular strep with Keflex & then he had an ear infection behind that with behaviors still going strong. We did zith then & he calmed down considerably but flared as soon as 5 days were done. Got more zith & it didn't have the same calming effect. We didn't do long-term abx prior to IVIg tho'. He'd gone into 1st PANDAS exacerbation in Jan '10 (lasted at least 5 months) & we didn't get dx'd until Oct with Dr. K after another case of strep dx'd in Sept caused 2nd exacerbation. Our local ped did not believe it was PANDAS even tho' I'd found it back last May & therefore wouldn't help...so abx weren't even an option for us. That ex-ped was very happy to refer me to a psychiatrist for SSRIs for my son tho. Grrrrrrr. And we were lucky that insurance did pay, but we were happily surprised when that happened & prepared to pay ourselves.

 

Good Luck & Happy Healing

[HT's Mom]

My son did months of oral antibiotics, months of IM penicillin and 16 IVIG treatments. Behaviors were still there and his ASO and AntiDNase B titers were as high as ever. We finally decided to try homeopathy and within 9 months the majority of my sons PANDAS related issues were resolved and for the first time in 3 1/2 years his strep titers were in normal range.

 

So in our case, no, IVIG did nothing for my son but put his parents very deep in debt. I must say we saw some improvement around IV 5 and 6 but then it leveled off and never got any better, then while doing IVIG the things that improved got worse again.

 

 

I can't imagine what you must have been going through to keep going through 16 IVIG's!! What in the world? Did your child have lyme or other infections besides strep? And what are the homeopathic treatments he is doing??

[HT's Mom]

Thank you to everyone so far.

 

Sarah Jane - How long ago did you see Dr. K and did your child not have prophylactic abx after IVIG? In other words, is this why the myco p so soon after? How long after the treatment before the new exacerbation? It is good advice to get additional testing done prior to our trip to Chicago to have those baselines.

 

S&S - thanks for positive feedback on Dr. K. What does HD IVIG mean as opposed to just IVIG?

 

Texas Dad - I totally hear you on the intrusive thoughts and ADD - this combined with more frequent ticking is mostly what we are seeing, or that he is telling us. To anyone else, all appears normal. He seems to be able to keep it together more this time than when he was younger, but it makes you wonder what's going on in their heads and how exhausting it must be to control and deal with it, mostly in silence. Grades have slipped across the board in the last two months, which for a sophomore in high school can end up being such an issue down the road. The only place he seems to be ok is on the soccer field - his long term love and playing well on varsity. It was always the one place where no tics occur, like singing does for some. But other than that, he is just not himself at all.

 

tampicc - congrats! And hopefully catching and treating so young will mean good things for your child. I so wish we'd known back then about PANDAS, instead of thinking he was just quirky and expressing separation anxiety or other stupid explanations for all that repetitive behavior. Did Dr K put he on abx after?

 

T Mom - yes I agree. They can't grow up like this and continue to live with it - they will be miserable or in trouble. That is not who my child is without this syndrome. His twin brother says, "I want my brother back." It is painful to watch one identical twin see his best friend and brother and mirror go through such crap. So we will do the treatment. One worry is the older they are the less success, so I would say that if you are coming to that place anyway, sooner is better. I have no scientific basis for this, other than wishing we had done it five years ago.

 

Thank you to all... Good luck.

[butterflymom]

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Edited October 9, 2015 by tampicc

[SarahJane]

We talked to K via phone mid-Oct & had IVIg in mid-Nov. DS was on 250mg zithromax daily post-IVIg. My husband got sick during the 3rd week post-IVIg & did several rounds of abx trying to clear whatever it but stayed sick. We had really good results with the IVIg & I think we were lucky to have gotten all the way out to 4 months post-IVIg without hubby's illness affecting son. And I don't know if my hubby was reinfected with myco p or had it all along & didn't clear it (or maybe he's chronic...and to be fair, I've not tested my levels but have had zero symptoms for myco p). So, our switch to Biaxin has seemed to be doing some good. We still may need to do another IVIg but we may be able to delay it now. And this exacerbation was not as bad as back in the fall, but it was still bad. I'd maybe even call it a flare since it seems things are getting better. If it were an exacerbation, I'd feel like we were starting from scratch & we don't seem to be.

 

IVIg doesn't necessarily keep your kid from getting sick. The idea is that you stop the crazy immune function & give the system time to rest & reboot. But they CAN get sick post-IVIg. And if you think you're sensitive to every sneeze or sniffle now...wait until post-IVIg.

[JAG10]

We talked to K via phone mid-Oct & had IVIg in mid-Nov. DS was on 250mg zithromax daily post-IVIg. My husband got sick during the 3rd week post-IVIg & did several rounds of abx trying to clear whatever it but stayed sick. We had really good results with the IVIg & I think we were lucky to have gotten all the way out to 4 months post-IVIg without hubby's illness affecting son. And I don't know if my hubby was reinfected with myco p or had it all along & didn't clear it (or maybe he's chronic...and to be fair, I've not tested my levels but have had zero symptoms for myco p). So, our switch to Biaxin has seemed to be doing some good. We still may need to do another IVIg but we may be able to delay it now. And this exacerbation was not as bad as back in the fall, but it was still bad. I'd maybe even call it a flare since it seems things are getting better. If it were an exacerbation, I'd feel like we were starting from scratch & we don't seem to be.

 

IVIg doesn't necessarily keep your kid from getting sick. The idea is that you stop the crazy immune function & give the system time to rest & reboot. But they CAN get sick post-IVIg. And if you think you're sensitive to every sneeze or sniffle now...wait until post-IVIg.

 

 

Who switched to Biaxin...your husband or son?

 

Congrats on the posistive results thus far.

[SSS]

As I sat in the IVIG chair with my dd6 yesterday, I reflected on the last 6 weeks from our 1st IVIG,

and there have been significant changes.

My dd is much younger (obviously) but what I have seen:

A much greater level of maturity. This is big. We had a lot of baby-ish regressions before. When I told her about the 2nd IVIG 3 days before, yes, she was sad and mad, but then we discussed it, and she was okay!

I was able to do this one on my own, just she and I.

Longer periods of 'gold' where she is content, lucid, calm, reasonable, independant.

I would say overall anxiety has been reduced.

 

We still have very severe OCD in some areas. We got re-exposed to strep a week and 1/2 ago, set her off (she did not actually get the infection) and we have the periods again (came back to daily) where a switch goes off, she loses control of her body, and compulsively hits and name calling (the light swearing.)

But even these are better than the full on exorcist rages we used to have (even 2 weeks post first IVIG) where I would think: My God, should I call an ambulance? Or if my DH was not home, I would have to call my 77 yr. old FIL to come over.

So these spells of the compulsions are the part we are praying for to leave with our 2nd and last IVIG, which we are now in the middle of-

Edited April 13, 2011 by S & S

[HT's Mom]

all these stories about positive experiences with IVIG are very heartening. Thank you all. I am humbled by all of you who have been through all of this. If I had known about PANDAS and all of this when we first saw the behaviors at age five, who knows where we'd be now. I feel guilty that I didn't pursue all of the possible treatments when he was younger, even though I know rationally that I couldn't have known then that we would be facing it again.

[airial95]

If IVIG is as effective as Dr. K claims, why are more parents not going that route (aside from the huge cost issue.)?

 

 

I think all of the stories of successful IVIG listed here are great! It's encouraging to hear that for the families (like us) who have not gone that route - yet.

 

But I thought I'd answer this question - for us, our decision not to pursue IVIG is not as much of a cost issue at this point, as much as it is I don't think my son is ready for that yet. Antibiotics alone has gotten us 85% back to baseline, and we're doing therpay to help with the residual OCD that is hampering our complete recovery. Our biggest problem has been exposure and re-infection. My son reacts very severely to exposure so that has slowed our progress.

 

The reason I say we're 85% is because even after the exacerbation subsides on the abx (usually a couple of months) we're left with OCD behaviors still - our therapist, pediatrician and other dr's all agree that some of this is due to my son's age - he's only 3, and was dx at 26 months (after 6+ months of thinking we had some REALLY terrible twos!!). In kids this young, the OCD becomes "learned" behavior, rituals and preferences that were compulsions before, are now just the "normal" way of doing things - that's how it's always been. So we've started to see a differenct between the actual exacerbation and the residual OCD. I think if our son was older, we might not see as much residual OCD, and it is getting better as he gets older. Also, alot of the OCD we see in our son is somewhat age appropriate for him (things developmentally normal 3 year olds might do) - just to an extreme.

 

I'm not sure I want to put my son through IVIG just yet - he's so little and young, and from what I understand, the side effects are not fun, and there's usually a "turning of the pages" where things get worse before they get better. If what we think about the residual OCD is correct, the abx may be getting him closer to 95-100% than we realize, and we want to give the therapy time to work (which it is).

 

IVIG isn't off the table for us, it's just not something we are pushing for at the moment. Our son's most recent strep infection was in mid-February (he's still working through his 90 day supply of abx), and this one was milder than the last, and the intensity of it passed much quicker than the previous 4 infections he's had.

 

I just thought I'd give you some insight as to why at least one family isn't going there - even with the success it seems to show.