IVIG for cases that respond to abx?

[AmySLP]

After 3 years of antibiotics (4 years since onset) for long stretches, with any attempts to come off, my daughters PANDAS symptoms return, usually with the oldest first and then a new issue or two following. We are in full exacerbation again, after I was told to trial her off the abx .for the summer. We had 5 weeks of maintaining symtom free status. I did find a patch of impetigo on her thigh and thinking this was the cause, although I started with a sore throat myself yesterday. My pediatrician, a huge PANDAS believer and will support anything I ask for, feels very strongly that we should pursue IVIG to see if we could clear this. Asking me to go back to Dr. B or another PANDAS doc. And ask for IVIG. I call my daughter's case mild, because I have read of much worse from your stories. He disagrees, feeling that it's well controlled because it has been caught and treated aggressively with abx. We have not seen a pandas doc since last fall, as when on the abx. She's been fine. Am I right to tell him that staying the course on the long term abx. Is the only real option? Or should I be seeking to trial IVIG....he seems to think we could cure this because she has been so responsive to abx...kind of a one and done principle. I think I know better from being on the forum and reading everyone's stories. To clarify...my ped. Is not afraid of long term abx...will prescribe all we need and feels that they are needed for PANDAS. he just feels that we should try this treatment. I have asked his question of dr. B and more recently Dr. Elia at ChOP only to be told that if she responds to abx., IVIG is not warranted. My ped thinks I should try Dr. T. Or should we go back to dr. L who diagnosed her in the beginning? Feeling though like I'm shopping around to get a treatment that may not be warranted. Please tell me honestly what I should do or what you would do. I have to go back to the ped. For a physical with her in a month and i know he will expect that I have an appt with someone.

 

Also the question of the tonsils keeps coming up...take them out or not? No traditional strep throat with her and in the past ENT said they looked normal. However, dr. Elia (saw her in December) thought we should consider it and the ped. Keeps bringing that up. I had my tonsils out at 13, but still have gotten strep and had some higher titers when tested before.

 

As always I am greatful for your advice,

Thanks in advance,

Amy

Edited August 16, 2012 by AmySLP

[nicklemama]

I wouldn't say my DS8 was a milder case. PANDAS hit him very hard. He was doing what we thought was pretty good on abx. He responded to abx right away and the improvements he made were tremendous. However, he hit a plateau of improvement after 7 months on abx. We really struggled with accepting how well he was doing verses pursuing ivig. We decided to go ahead w/ ivig while he was young (7, at the time). We had no idea the further gains he would make after ivig. He improved in ways we couldn't have imagined. He saw Dr K this past Monday. Dr K was amazed himself. Told us our DS was a new boy, had aged 5yrs in the 14 months since he'd last seen him.

 

That said, DS has some flares whenever exposed to strep and he's still on prophy abx and will be for at least another yr. We visited Dr K because DS has started having adventitious movements w/out the other behaviors returning. IVIG may not be a cure all. DS is currently on treatment dose again for 14 days and will be evaluated after that time for our next move.

 

If I'd known the improvements we'd gain from ivig, I'd have done it sooner. This is not the story for everyone and I certainly don't know if its right for you or not. Just wanted to share our experience.

[kos_mom]

My DS also responds to abx, albeit over many months. When he saw Dr. L in June she said his classic case combined with good response to abx made it a "no brainer" for him to have a T and A. We got that done in June and she is now advising IVIG, which we hope can be accomplished next week. She said he will continue on abx after IVIG--not sure how long. We'll probably check back in December. For reference, DS is 22.

[tpotter]

Since your doc is so supportive, would he consider ordering the IVIG himself, so you don't have to wait a long time for an appointment, and who knows what the response will be, anyway (if with Dr. B., you might get answer such as immune deficiency, that would help you get insurance approval.) Your doc can order it through a homecare agency that specializes in IV therapies (there are plenty of good ones around.)

 

If he still insists you see a doc about this, I would highly suggest Dr. B., because he will look for immunological reasons your child is having problems, and he also looks at the possibility of other infections that may be causing your child not to get 100%. The other docs you mentioned are neurologists/psychiatriasts, and they don't have the immunological piece (although most of the ones you have mentioned are excellent.)

 

As you probably are aware, both my DS's have had PEX and IVIG, and I am very grateful I did it (but we were also dealing with severe PANDAS.) Personally, if my DS was not severe, I would look closely at that the possiblity of other infections first, such as viruses, mycoP, lyme, bartonella, babesia, etc. The blood tests are quite inaccurate for the lyme and co-infections, but if your child is still off abx, there is actually a new one from Advanced Labs that takes a picture of the spirochets, and is about 80% accurate. Personally, we did not expect to find Lyme and co-infections, and the tests we did were all "negative" (per the CDC), but turns out everyone in my family has it (DH was the only one CDC positive.) This certainly has made a difference since we started treating.

 

These are just my personal opinions on the whole thing. For the record, I am glad we did the PEX and IVIG, because my boys were very severe, and needed it, but they won't get completely better unless we also continue to address the additional infections.

[MomWithOCDSon]

Amy -

 

I can really feel for where you're coming from. My DS also responded well to abx, and we elected to keep him on them for a full two years before finally weaning him . . . albeit very slowly . . . off. Knock on wood, he's been off since December 2011 and seems to be holding his own.

 

Like you, because DS responded so well to abx, we did not feel that IVIG was a necessary or even "right" answer for him, though we saw Dr. K. and, as that is his standard protocol, that was the recommendation at the time. To be honest, it was Sammy Maloney's story that finally got us some traction in identifying and treating PANDAS in our conservative medical community, and the fact that my DS and Sammy had so much else in common (age at major exacerbation, mathematical abilities, etc.) sort of provided us with this "model" if you will that said well, abx worked for Sammy, so given adequate time, they can work for us, too. And, seemingly, they did.

 

But having heard Swedo speak several times now on the topic, and hearing her evolving ideas, research and reflections on treatment options, I'm not sure that we wouldn't opt for IVIG ourselves were we to hit another exacerbation, or that, in hindsight, we might not've done well to have gone that route two years ago, and followed it with abx. While it seems to me, anecdotally at least, that "one and done" isn't a standard, honest response . . . most kids seem to need at least a couple of IVIG's or at least one PEX procedure, plus steroids and/or abx on the heels of that to re-achieve their best health . . . it does seem to be an important tool in this fight. For me, some particulars still require some clarification, such as is IVIG perhaps more appropriate for the immune-deficient as compared to the hyper-immune? And is there substantive difference in the response to high-dose versus low-dose IVIG? Lots of questions that I fear it may take until the next generation to get full clarity on.

 

I have to say, from attending the panels at the most recent IOCDF conference, Dr. L. seems like a really good option to me, and since you've seen her in the past, perhaps another visit is in order. She presents as very experienced, knowledgable, measured, unafraid and uncowed in the face of opposition to PANDAS as a diagnosis, let alone providing treatment for it, and circumspect when it comes to the use of the available, known treatments. She doesn't appear to be a "one-trick pony," which leads me to believe she really considers the patient's individual needs and presentations in formulating her response.

 

All the best!

[AmySLP]

I guess to clarify...we have been at this for four years....seemed to have exhausted all others possibilities of infection and treated those suspected with dr. B over a 2 year period. Have been on a combo on abx, high doses of zith, augmentin and clindamycin. Certainly tried lots of things and did much testing. Currently using Bactrim which is what we used as prophylaxis, albeit not typical, it's worked. I'm going to call for a zith prescription to use the 2 in combination for a few weeks. Think I can get a T & A, but do not think my ped would know the first thing about what to order For IVIG.

 

My daughter has always had tics and chorea movements primary, but OCD and irrational fears that seem to pile up with each exacerbation.

 

Please keep your opinions coming. It helps out so much to hear what's worked for others. Can't believe that I'm still here asking for help four years later, but glad there is a place to come.

Edited August 16, 2012 by AmySLP

[sf_mom]

We have done both 3 hdIVIGs for older DS when we felt PANDAS was primary issue and we've not pursued hdIVIG for our younger twins. Our younger twins definitely have documented immune deficiencies: strep pneumo serotypes and Igg 1 & 3s which is one's ability to fight infection. We did find the hdIVIGs to be helpful for older DS but six months post his last treatment we had other issues like 'unknown parasite', food allergies 'severe', KPU and also discovered other chronic infections of Lyme et al. Although, we do not rule out the idea of hdIVIG for our twins we hope to bring them to full recovery without going that route.

 

We know that hdIVIG was not a cure for older DS. AND, we have not removed tonsils that were considered to be kissing at one point in two children. Things that have helped tremendously throughout our journey has been treating viruses 'ongoing with herbals', KPU, oxidative stress, implementing a daily detox regimen, heavy metals, parasites and restrictive diet. Our twins are a work in progress but one is currently nearing symptomless status. She has been treated two years ongoing by 2 integrative LLMD and recently an integrative pediatrician that are helping us to address all these issues. We have not tested her by taking her off antibiotics yet so it is unclear if we will be faced with relapse. BUT, she maintains the high level of recovery even when faced with bacterial infections.

 

From your post, it is unclear if you have explored things like methylation, food allergies, vitamin/mineral deficiencies, etc. Perhaps these are some simple things to explore in advance hdIVIG that might help tremendously.

[beeskneesmommy]

Similar, I think. My son, almost 6 is a "milder" case. He was dx at age 2.5 and had a major, acute episode Sept. 2010. It took a long time to get him here, but he has responded well w/abx. However, when exposed to Strep and some other "bugs", it always comes back for another flare. In order to get him across the finish line, we are choosing to have IVig. We have several "big gun" specialists on our "team" and all 4 agree that IVig may very well end this roller coaster ride...and I do not use the word "end" loosely. We have been told that in our son's more "mild" case, given the fact that we have treated strongly w/abx throughout, 1-2 rounds of IVig may send it all packing. We are scheduling it for mid Sept. Good luck and best to you! -Kath

[minimaxwell]

I would go for the lVlG. Both Swedo and dr K have told me they think abx is just a band aid. Yes, I do recognize that abx alone have help some (Sammy Malone) but if you could get the lVlg covered I would do it in a heartbeat. It has helped my DD tremendously. BTW, Dr T is now set up to do this in his new office.

[AmySLP]

Heading to cape cod tomorrow and hoping the beach air will fix things! Just kidding, but don't I wish it could be simple. Called ped. To get another abx on board, so we can try to improve things before school starts. Thanks for all your opinions and info. They are all so valuable!

[PowPow]

I would go for the lVlG. Both Swedo and dr K have told me they think abx is just a band aid. Yes, I do recognize that abx alone have help some (Sammy Malone) but if you could get the lVlg covered I would do it in a heartbeat. It has helped my DD tremendously. BTW, Dr T is now set up to do this in his new office.

 

Is Dr T working with any kind of insurance for IVIG?

[AmySLP]

I will call his office and ask on Monday about insurance approval and payment. I am curious too. We have paid so much out of pocket and then waited months for reimbursement that I just can't do that with something this costly.

[HT's Mom]

I would absolutely unequivocally go for IVIG. You are lucky to have a believing supportive PED. If there is anything I regret in our long journey is not knowing to do IVIG way way back. Years later, after two IVIG's and tonsils out for safe measure, my kid is back. I agree that abx are a bandaid and that whatever mechanism IVIG resets it is necessary at some point.

 

It can't hurt! (assuming lyme is not an issue - I know others have had problems after IVIG when lyme is present.) But if you can swing it, do it.