Thinking out loud

[norcalmom]

HI all,

 

I've been around the board here for a couple years. I've gone through what I consider to be the "Five Stages of ACN" - 1) Lurker 2) Sharer 3)Addict 4)Complete Withdrawal (I was spending too much time here, and I didn't see my son get 100% better-so I felt like I had no business advising others) and finally, 5) Healthy Relationship. I mostly read and only reply if what I have to say is different from other posts, and I only check in once a week or so.

 

I'm preparing for two things - one is attending the symposium in TX , the other is taking the next step in our search for full recovery. They are basically the same thing. Right now I've got some words written in no particular order on a sheet of paper. I plan to review all the literature in my very thick file of research -so I have a shot at understanding some of the presentations!

 

I'm hoping that some of you out there have similar questions and can help me formulate these questions, and perhaps prioritize (if I even get to ask any). I'm sure I'll be posting any new information I glean from those two days.

 

My son has PITAND, sudden onset after a strep episode (although we don't have documented rise in titers - tested too late) . We've had two HD IVIGs of 1.5mg, 9 months apart, and are currently 6 mos. past the last one (April 2011). They have had a tremendously. The first was more dramatic improvement, but he was sicker. Unfortunately for us IVIG was not the lasting cure we had hoped for. He seems to improve steadily for several months, then decline somewhat slowly – especially if he catches a cold. We are going through that right now. I don’t know if it will be a few days or several weeks, but the symptoms have come back (not as bad as before IVIG-but there).

 

Most of my questions are centered around this. I’m not planning on asking most of these OUT LOUD, I’m hoping most of the answers are in the presentations, or clues to my answers are there. I’m just hoping for something to direct to our next best step with DS.

 

Chronic Pandas- Can going without treatment for too long damage the immune system so it never figures out how to fight off viruses without creating anti-neuronal antibodies- even after IVIG?

 

PANDAS v PITAND -Have you found any differences between Pandas and Pitand kids in terms of infection, immune issues, or success with different treatments? Chronic Infection – are some of these kids infected with chronic strep, or other infections – causing immune “confusion”, which leads to “chronic pandas”?

 

Lyme- in the current study the kids had to have a very close relationship to strep, and I understand they were also screened carefully for lyme. What percent actually had Lyme (I heard those kids were not allowed into the study). Were they screened for other infections (like mycoplasma pneumonia) or immune deficiencies?

 

IVIG -What makes some kids better after one round of IVIG, and other not? Is there any evidence that several IVIG’s done closely will have better result? Any evidence that 2 is better than 1.5 (and what about low dose – why doesn’t that work?)

 

Antibiotics – this is more of a personal question, not one I think I’ll find an answer for at the symposium. I’m planning on switching antibiotics again. Doxy or Augmentin XR. The XR – I’ve seen a number of posts on successes with that. Doxy, because my son MAY have mycoplasma or Lyme, and Doxy better for both of those than the Azith DS has been on for almost 2 years…but can’t take Doxy in summer because of sun sensitivity – so I’ve been waiting.

 

ANY thoughts or input on above appreciated. What else should I be considering as I sit and listen?

 

PS – I tried giving DS some Delsym yesterday and this morning and it seemed to help a bit. He has mild sniffles, and we saw an uptic in symptoms past few days…not sure it’s better than Advil yet, but appears at least equal (could be placebo effect I admit – but he said it helped). Thanks to whoever posted that one!

[smartyjones]

I've been around the board here for a couple years. I've gone through what I consider to be the "Five Stages of ACN" - 1) Lurker 2) Sharer 3)Addict 4)Complete Withdrawal (I was spending too much time here, and I didn't see my son get 100% better-so I felt like I had no business advising others) and finally, 5) Healthy Relationship.

 

 

norcalmom -- such astute comment on the stages! love it. i seem to find myself stuck in more or lesser terms of 'addict'. maybe i need to go through 4 to get to 5 -- ?

 

 

i am very interested in the role of viruses in the initial cause and/or exacerbation of symptoms. most of the 'infections' we discuss are bacterial and the focus is on eradicating them or at least bringing them in line to a symbiotic relationship within the body. i'd love to know the info discussed on viruses alone or in addition to the bacteria.

[dcmom]

Norcal- good questions! Please follow up with what you get from the TX symposium for those of us who won't be there.

 

A few thoughts-

 

Swedo has stated that PANDAS kids tend to react to subsequent non- strep illnesses. I dont know the difference of pandas and pitand, but my kids were triggered by a known strep infection, yet can be triggered by other illnesses, I consider them pandas.

 

In my personal opinion, confirmed by Swedo (as her opinion) a year ago, right now pandas is thought of as an autoimmune illness to which there is no cure, only remission. Why some have very long term remission, and others seem to fall into a more chronic state, it probably a great mystery of medicine- just like why some with lupus or ms have long term symptomless remission, and others very difficult course of illness....

 

Lastly- if IVIG is so helpful to your son, is there a reason that you are not pursuing a more regular interval of infusions (I believe some on here have had luck with regular infusions, Dr B style).

 

Glad to hear YOU are in a healthy place! I have had pneumonia for the last two weeks, that is why I have been online too much. I need to move to that place this year

[cynditk]

I have many of your same questions, though I haven't been at this as long, but before I was here I did DAN and Yasko protocol for years for neurodevelopmental issues.

 

I am wondering how methylation defects fit into all of this from my DAN/yasko background, and since a new doctor just brought that up. My son crashed when we tried transitioning off the Yasko/DAN treatments and has never really recovered (several years ago) I am wondering at this point what happens if we try re-integrating what we are doing now (antibiotics, IVIG) with the old DAN/Yasko stuff.

 

My son is more PITAND and suffers from chronic infections, immune deficiency, and neurodevelopmental issues. we are considering hd IVIG and are having some success with homeopathy as well. I think the energetic aspect of illness is important and that homeopathy really does have a place in our kids recovery.

 

Re: chronic PANDAS, I just had a LLMD tell me exactly that my son's immune system has been seriously damaged from chronic infections and that hd IVIG is his only hope. So I would be curious what researchers think about this question vs. clinicians.

 

I'm also wondering why you don't pursue more hd IVIG- financial reasons? Or fear of being dependent on it for improvement?

 

As far as antibiotics, if suspecting Lyme/Myco why not try both Augmentin and Doxy?

[T_Mom]

...Re: chronic PANDAS, I just had a LLMD tell me ...that my son's immune system has been seriously damaged from chronic infections and that hd IVIG is his only hope. ...

 

Norcal--THANK YOU for taking these questions forward--you have articulated some that many are wondering about.

 

Piggy-backing on what cynilinntk said above, I wonder if those presenting at the TX conference have an opinion as to the preference of using IVIG or Pheresis -- WHICH one do they consider more beneficial for long term healing and is one preferable to another or is it just that the "availability" of the treatments is resulting in these being done??? --and is one better for PANDAS vs. PITAND?

 

If you get a chance, can you please ask Dr Swedo directly as it has always seemed she thought pheresis was more long-lasting, while Dr K seems to think the opposite...maybe: Which one is preferable and WHY?--

Thank you--

Edited October 5, 2011 by T.Mom

[JAG10]

Norcalmom,

 

My question/speculation is regarding "chronic pandas" and the idea of outgrowing it..... Do they think this occurs when a person "physically stops growing" whenever that occurs from early teens to early twenties and do they think that is due to the BBB tightening at that point or that the body ceases to produce the anti-neuronal antibodies or at a reduced rate?

 

I loved your ACN addiction phases too, teehee.

[norcalmom]

Im back...twice in one day might seem to indicate I'm slipping back to stage 3!!...but I just re-read "a Way Forward" and yes - Swedo (actually there was a study by Kurlan 2008 - that found found 87% exacerbations could not be found to be triggered by GAS, only 7-25% were caused by GAS, were caused by other things..Im assuming these were not initial episodes. So I guess I'm not alone. I just wonder if those who only have a recent strep infection - no other know infection - are the ones going into remission.

 

The PEX vs IVIG question is a good one - esspecially since if you read the original study, it seems that PEX is better. I do know that the theory is that the donor antibodies will regulate an induviduals production of antibodies longer term (there is a feedback loop where once an antigen is found, the cells ask again and again for that which they can latch onto - teaching the immune system to send out anitbodies immediately when it finds any trace of the antigen. In our kids cases they send out anitbodies very similar to strep antibodies, but that attack themselves). Ill see what she says.

 

I'm hoping to get trapped on an elevator with a few of them...one can dream!

 

I'm planning on switching up the antibiotics. As for IVIG again, not unless we have to, or I hear some overwhelming data that doing it more often leads to better results. DS improved after IVIG for up to 4-5 months, then started to slide back (most notable when sick). DS has EXTREME reaction both times. 10+ days of migraines and vomitting if I missed an adult does of advil every 4 hours (I'm talking vomiting in the middle of the night 10 days after IVIG becasue I thought it was time I slept more than 4 hours!) . Holding his head and screaming. I got and gave steroids the first night when it was extreme - which he threw up. I was petrified. If we do it again I will try doing the steroids before and after for several days.I think Dr B does this. He also has bad needle phobia now, and avoids telling me stuff because he's afraid I'll take him in for blood tests and IVIG.

 

I'm waiting for the sun to go away before changing the antibitoics. DS plays baseball, and got major sun sensistivity on Doxy last time, so he couldn't stay on it.

 

There is some interesting Dopamine, glutamine receptor info on page 323 of "a way forward". Don't know how that might relate to the methylation cyndilynntk, but I think I've read somewhere it is connected.

[norcalmom]

JAG10 -- it seems the researchers have enough contact with patients over the past 20 years that have passed puberty that they should have some information on weather it will remit , and what chances of that happening are!

 

There was a 10 year follow up study with pandas patients that was sppossed to published last year - and never got completed (or published). Some of that data must be somewhere.

[MomWithOCDSon]

If you get a chance, can you please ask Dr Swedo directly as it has always seemed she thought pheresis was more long-lasting, while Dr K seems to think the opposite...maybe: Which one is preferable and WHY?--

Thank you--

 

Not to hijack . . . and certainly Dr. Swedo's current, maybe fresh, perspective on this topic would be great to hear . . . but I made notes from her presentation at last year's AO conference. She said then that she felt that pheresis was the preferable response to PANDAS in terms of its efficacy, but that due to resistance to the process itself on the part of doctors, patients and insurance companies, she felt IVIG was the next best solution.

 

Wonder if her feelings have changed more recently on that topic, given the IVIG trial that's now underway?

[Alex]

JAG10 -- it seems the researchers have enough contact with patients over the past 20 years that have passed puberty that they should have some information on weather it will remit , and what chances of that happening are!

 

There was a 10 year follow up study with pandas patients that was sppossed to published last year - and never got completed (or published). Some of that data must be somewhere.

 

That to me would be the best question, how are the kids from the original studies doing today, and what, if anything, correlates to the best long term outcome?

 

Another PANDAS parent told me that her son's psychiatrist, who corresponds frequently with Dr. Leckman out of Yale, said the Leckman says that the best long term outcomes were in those who had tonsil/adenoidectomies. Complete hearsay at this point, but I'd love to ask him if that was true.

 

I'd also like to ask Swedo if for those kids with elevated ASO/ ANti-Dnase B, if the lessening or disappearance of symptoms correlated with the lowering of the strep titers.

 

I'd like to ask Dr. Cunningham if there is a timeline for a commercially available version of the labs she was doing for her PANDAS study. I'd also like to ask her how significant a role she believes that lyme disease and co-infections plays in PANDAS. There is so much focus on this forum on lyme, just wondering if the experts are on board with that.

 

Wish I could be there.

[trggirl]

Cyndilynntk, would you mind sharing what you were doing with the Yasko treatments. I have always been interested in this and I'm wondering what you did exactly and how it helped?

 

Norcalmom, you have some of the same questions I have. I hope they offer some new information at the symposium. Our doctor is supposed to attend and I am anxious to hear if he learns anything new.

Edited October 6, 2011 by Trg girl

[saidie10]

Hi! My story is so very similar to yours in terms of my life on this wonderful Forum. When we were knee deep in the throws of trying to figure out what was wrong with our son we were an addict, once we finally did get a dx we were an addict, and then when we were trying to figure out what to do about it I was still utterly and completely addicted to this site! Then honestly, I needed a break. Between the doctor visits, my online research, and my endless need to read every new post on this forum and offer advice where I could, I honestly had become a complete and absolute basket case! Ultimately we did find a doctor to treat our son and that was what all the hard work had been for.

 

Well here I am though, back again, lurking the pages for information and feeling the need to begin researching again. Researching to make sure we are doing the right things for our oldest son and again visiting the possibility that our youngest son also has PANDAS.

 

I too am fortunate enough to be attending the symposium. My DH is going too which I am really about as this is still very difficult for him to understand and put his mind around. I had the great honor earlier this year to talk briefly on the phone and in person with Dr. Cunningham when she came to San Antonio to speak at the UT Health Science Center to a group of doctors and students including my son's Immunologist. I am looking forward to hearing her speak again, hearing Dr. Swedo, and Dr. Murphy out of Florida. I plan to take a bunch of notes and if possible shoot out a question (your questions are awesome by the way!). I would love to meet up. I will PM you my phone number and if you get a chance and want to take the opportunity to meet up, please feel free to call me!

 

Thanks,

Cindy

[MomWithOCDSon]

I'd also like to know the current thinking on antibiotic therapy, maybe in conjunction with IVIG and/or as a singular therapy all it's own. If I remember correctly, Swedo didn't think much of long-term antibiotics alone in the past; I think she had some of the same concerns about building abx-resistent bacteria that some other practitioners have expressed. And yet our pediatrician says she has no concerns about that whatsoever. So what's the current thinking there?

 

Also, on another thread, someone here mentioned that the kids in the IVIG trial were being given "follow-up" abx, but that the type of abx was being varied, I suppose on purpose and not just in response to allergies, etc. I'd be interested in what's behind that protocol and if they're finding anything yet in terms of which abx might be "preferable" and under what conditions?

[eljomom]

I would be curious to know how well-served a Pitand child (and aren't MANY pandas kids also PITAND after the first strep episode??...another question) is really by giving prophylactic abx for 2 reasons: 1) won't keep viruses or other inflammation away, and 2) doesn't always even keep strep away, as many can attest to.

 

Also, why aren't all docs recommending T&A rather than proph. abx for Pandas-only kids, especially?

 

Do you think there will be opportunities for parents to speak directly with any of these doctors??