pandas and zebras should work together

[JAG10]

This is in response to the PANDAS Network update and some posts read over time.

 

Perhaps some of the veterans or Diana herself could help explain this to me...

 

Why is it necessary to continue to quarantine or cyber-exclude the children with "long-term" PANDAS?

 

My understanding is that most docs are familiar and open to the textbook PANDAS; 24 hours normal to completely nuts following strep. It is the children with asymptomatic strep, the ones whose "sudden onset" coincided with the terrible twos or threes or younger, the ones who parents sought mainstream psychiatric treatment young and were put on psych meds that confused the whole picture, the ones whose titers don't spike, the ones whose systems are further complicated by other infections, ect., ect-I'm sure there are more.

 

Are these children the rare ones, the zebras.... or are THEY the rule??? If the leading PANDAS experts in the country are treating these children and documenting on their websites that positive outcomes to treatment are independent of how LONG since the child's initial onset of symptoms, shouldn't we go with that? Shouldn't that be good enough to tone down the obligatory cautionary proclamations, especially from within the community itself?

 

IMHO, the direction of the conversation needs a make-over; It is the obligation of the medical community to thoroughly rule out infectious and autoimmune etiology prior to mental health diagnosis or treatment in children. When that is the protocol, then this community can claim quite an achievement! Those parents with children with "long-term" PANDAS, who by whatever miracle came across the correct diagnosis and treatment after witnessing their children suffer for far too long, have an obligation to share the joy of their child's recovery and further educate all of their child's previous doctors and help pave the way so that all PANDAS children receive the appropriate medical care.

[MomWithOCDSon]

Brava, brava!!!!

 

So wonderfully said! My thanks and kinship go out to you!

[Fixit]

Ditto!!!

 

Brava, brava!!!!

 

So wonderfully said! My thanks and kinship go out to you!

[kimballot]

IMHO, the direction of the conversation needs a make-over; It is the obligation of the medical community to thoroughly rule out infectious and autoimmune etiology prior to mental health diagnosis or treatment in children. When that is the protocol, then this community can claim quite an achievement! Those parents with children with "long-term" PANDAS, who by whatever miracle came across the correct diagnosis and treatment after witnessing their children suffer for far too long, have an obligation to share the joy of their child's recovery and further educate all of their child's previous doctors and help pave the way so that all PANDAS children receive the appropriate medical care.

 

I have a zebra. As soon as my zebra is recovered, I will gladly share my joy and help others receive appropriate care. Until then - thank you to everyone who is paving the way for our family!

[LNN]

In my experience, general practice pediatricians have heard of PANDAS, but many still consider it a theory. Most are reluctant to treat with more than 10 days of antibiotics, regardless of whether a child presents with "classic" symptoms. As a result, illness can quickly stretch from what "should be" a quick resolution following aggressive treatment into a protracted illness with months and years of ups and downs and re-exposures.

 

My son should have been a text book case. Unfortunately, we're now approaching our second anniversary with this disease, even with Pandas doctors and plasmapheresis on our side. Diana's son, even with treatment from Dr K, needed two IVIG treatments and a year of recovery before she could tentatively claim success. So I think it's wise to add caveats about treatments and recovery.

 

There's still so much unknown, so much yet to be "proven" and agreed upon, that it would be unkind to tell parents "hey- do this and your child will be cured." Expectations need to be tempered by a very real risk of setbacks. I know of kids who've recovered, outgrown, moved on. But I also know families who still struggle in spite of prophylactic abx and aggressive treatments. So I don't think the community can write letters to former pediatricians and claim victory. It's what we should - an end to the controversy and a re-framing of the problem so we can focus on cure. But the science is complicated and the public health policy still very controversial.

 

I have shared my story and will continue to do so. But it's filled with caveats and pitfalls. I don't know that there are unequivocal success stories yet. We are a work in progress - all the more reason to share, exchange ideas and research. But we are all still a bunch of zebras until money is directed at the problem.

Edited April 6, 2010 by LLM

[thereishope]

I agree we need to all work together. I think for some things the kids may be put into different catgories (dx at sudden onset vs long term). I can see doing this when trying to find subjects for research (that way the researchers are more confident about the dx) or for trying to convice skeptics. The sudden onset (and realizing it at the time of sudden onset) may be "easier" for some to understand and prove to them?

 

I will always include sudden onset PANDAS, long term PANDAS, PITAND when explaining the disorder. We are all in this together!

[tpotter]

My childrens' current pediatrician (we had to change multiple times, because we were getting NO help, even with a formal dx and tx from a ped. neurologist) told me that the reason so many doctors are hesitant to agree that it's PANDAS (especially general pediatricians) is because if they dx it, they have to be able to tx it (or face possible malpractice!) If they don't know anyone who can help the child, and they don't feel they know enough about it, they say nothing.

[Alex]

Unfortunately any discussion of PANDAS is clouded by the medical skeptics like Roger Kurlan, or as I like to refer to him, that ###### ###### Roger Kurlan. By basically denying that PANDAS even exists, guys like him further confuse the issue on what's already a complicated illness, allowing still a pretty significant percentage of docs to just say that they don't believe in PANDAS.

 

I have to disagree with LLM though when she says there are no unequivocal succes stories yet. I've even seem them on this forum, but the nature of the forum is that they get posted and then dissappear off the first page after 24 hours or so and are forgotten. How often can we expect someone with a success to get on here and tell us? PANDAS-Chicago is a good example. Who remebers her story of her son's recovery? I think she said it took a couple of years after IVIG until she felt he was completely recovered. I'm glad she shows up on here every once in a while but I bet most have never read her success story.

 

I think one of the points of Diana's e-mail was to be encouraging. She said she has loosely followed 60 families and the majority are greatly or completely better. There you have it. There are your success stories. The now 17 year old girl had ups and downs for a couple of years after IVIG but now is 100% PANDAS free. But as we can all relate, her mom has a hard time talking about it still to this day, 10 years later. Maybe she's afraid she is tempting fate by saying it out loud, another reason I think you don't see parents on here going on and on about how well their children are doing.

 

It certainly seems like for the vast majority the recovery is protracted. So if the parents post, they have to add caveats to the good stuff. As things get better slowly, they are on here less and less, post less. By the time they get to full recovery, hopefully they are stand up individuals and get on here and tell us their story, but if they do, it's off page 1 the next day.

 

I am confident that my son is not going to live with PANDAS. It will be in his past at some point. I think the evidence is supportive of me believeing that. He is seven weeks post higher dose IVIG and is doing well. I could add some caveats but feel strongly that someday I won't have to.

 

Alex

Edited April 6, 2010 by Alex

[JAG10]

Certainly, recovery and relapse cycles appear more common than not and those expectations have been made clear to all who seek information. But, positive response to autoimmune therapy, even if not permanent, should give any reasonable physician worth his or her MD something to seriously consider. Children cannot have positive responses to treatments that are not offered to them because they do not fit the research study criteria. Practice and research serve different purposes and, gratefully, we have some top docs who are pioneers in both; because of them, countless children will have some of their childhood salvaged.

 

We all want that, don't we? I could be mistaken, but there seems to be an undercurrent of fear that if PANDAS application becomes too broad, it will be to its detriment. With each child and case history that is examined, more is learned. With each success and failure, more is learned. Risks have to be taken to learn and make progress.

 

My intent is by no means to undermine heroic warriors like Diana; the parents who selflessly donate their time and resources, share their stories and move mountains one bucket of soil at a time. Their compassion is limitless and that is why I know there is the capacity to support and include any family who asks "Is this PANDAS?"

[Buster]

I wasn't sure whether to respond to this post or not... as this is a pretty tricky topic.

 

Even when I saw amazing results and got my child back ( sigh - hard to even think of 2 years ago) -- there remained this weird doubt of whether this was just a placebo effect, was this just the waxing and waning of OCD, ....

 

I know my wife will post and say "are you crazy, the hallucinations, contamination fears, weight loss are not a waxing/waning of OCD." I know, I know, but it bugs me like crazy that we still don't really know exactly what happened at a fundamental level. It must drive folks with Tourettes Syndrome a bit nuts that despite many decades of research there's no better understanding of what causes Tourettes Syndrome.

 

For PANDAS, we've got good experiments and great anecdotal evidence of the effectiveness of antibiotics and IVIG, but it is still relatively weak evidence -- way more studies are needed.

 

What it all comes down to is risk/benefit analysis. As parents we're trying to make the best informed decisions regarding our kids.

 

We elected that long-term azithromycin was the right thing for our child based on studying relative risks and the perceived benefit. We also elected to do IVIG based on the severity of our daughter's symptoms and on reading nearly 200 research papers and finding the benefits (for our daughter's condition) outweighed the perceived risk.

 

I think in our case if we hadn't had the sudden onset, we probably never would have found PANDAS, never had disputed the doctors who told us she'd need long term psychiatric care, and given in to some very nasty (frankly poorly studied) anti-psychotic drugs.

 

What leads to the focus on sudden onset is a really small research study that Swedo did in 2000 where she tested the effectiveness of Plasma Exchange for non-sudden onset childhood OCD

http://www.ncbi.nlm.nih.gov/pubmed/11026187.

 

This is an extremely limited trial (5 kids) but it led rightly or wrongly to Swedo's hypothesis that some forms of OCD have auto-immune pathogenesis and others do not.

 

A parallel study was supposed to have been done by Hoekstra in 2004 on IVIG for tic disorders; however, he focused on adolescents/adults (mean age 28) http://www.ncbi.nlm.nih.gov/pubmed/15119917 -- so who knows if this applies to childhood onset.

 

As far as I know there hasn't been a study on effectiveness of IVIG on non-sudden onset OCD in children. This means there isn't a lot of research to help here to give us even a modest compass direction. Personally, knowing what I know now, and listening to Dr. K's talk about being able to treat some misdiagnosed Autism, I would totally try several rounds of antibiotics. I might even try IVIG if my child were in a severe enough case because in our case the potential benefit would outweigh the perceived risk. I just don't know how to evaluate the risk of anti-psychotic drugs and their influence on a child's development versus the risks of IVIG.

 

This is a really personal decision and so I can't really offer any advice here except to say I understand why sudden onset is highlighted because the available research increases the likelihood that a child with this symptom is more likely treatable with anti-biotics/anti-inflammatories/immuno-modulation. Non sudden onset may be auto-immune too -- we just don't have good research to know.

 

Buster

[T_Mom]

Well stated Buster--

 

I have nothing to add but to say that two (of the 16 +) doctors that we saw within a 6 month period of time last year, when our d was out-of- her-head with severe OCD, used that stupid zebra/horse analogy...

 

Not having a verified strep, but having crazy sudden-onset OCD "storm"...and at other times, creeping-back OCD with illness...we TRIED long term antibiotics and steroids and they worked. She is symptom free (and we are thankful) --

(We didn't have to go to the psych ward afterall...)

 

Buster you make a convincing point re: Swedo and the 'possible' leap she made in the sudden-onset issue of OCD.

--how fearful is that -- and what do the drug companies have to lose (big time) if it came down to antibiotics and immunomodulating treatments.

[peglem]

Then there's my kid...non-sudden onset OCD, but w/ strep related flairs. She'd go from bad to very very very horrible- and abx would bring her back to merely bad. Agressive abx have made her not too bad and we see signs of "normal development"- she's about 12 years behind though!

[kimballot]

This is a really personal decision and so I can't really offer any advice here except to say I understand why sudden onset is highlighted because the available research increases the likelihood that a child with this symptom is more likely treatable with anti-biotics/anti-inflammatories/immuno-modulation. Non sudden onset may be auto-immune too -- we just don't have good research to know.

 

Buster

 

Buster - always a pleasure to read your posts and thank you for the heart felt words. I struggle with the idea of "sudden onset", because my son did have what I consider to be a "sudden onset", at about 1 year of age. I can remember suddenly realizing that he could not control his behavior - the biting was endless... the inability to fall sleep, inability to stay asleep, outright defiance... all wrapped in a little toddlers body. All went away when he went on antibiotics for yet another sinus infection. All came back when the antibiotics ended - time after time after time... all twisting and turning into seven years of "high dose", "low dose", "no dose" antibiotics of various types coupled with behavior management and sleepless nights and lots of doubts and fears, until he finally had his tonsils removed and everything calmed down. But what was left was so ravaged... it was difficult to recognize the pieces, and now, 6 years later, we are still trying to determine how the pieces fit together. How many children have a sudden onset at a young age, or at the age of two when all children look like they could have ADHD and OCD- so we don't even recognize the onset?

 

I so appreciate reading of the experiences of all the families that are struggling with this condition. Evidence - based practice says to consider all of the evidence available, but many people forget that expert opinion is one form of evidence - and when there is a new diagnosis it is often the only form of evidence. The studies - limited as they are- are so helpful, and they help to keep me objective... but the experiences of the families on this site -the PANDAS and the zebras - are helping me to recognize the pieces so we can put them together... I am seeing new pieces that I did not know existed .... mycoplasma, CamKinase levels, IGg levels, strep carriers, allergies, ibuprofen.... all new pieces that are fitting together.

 

And Alex - thank you for reminding me that I AM going to see my son on the other side of this. I am going to put all the pieces together somehow and we are going to look back on this one day. And I hope that my experiences will add to the knowledge that helps others to recognize the pieces sooner.

[JAG10]

Hi Buster,

 

You are such a wealth of information and so right about cost/benefit analysis.

 

Let me bounce some thoughts. You reference the small Swedo study about plasma exchange and say that is related to non-sudden onset OCD. What I thought the abstract stated was not non-sudden onset OCD, but OCD not associated with strep, which means no history of recent positive cultures and/or no elevated strep titers (and implies the 5 were tested for such)?

 

All OCD has to have a sudden onset at some point, right?. Boy, can that be hard to identify in a very young child. Normal child development is hallmarked by unusual behaviors and skills repeated at nauseum usually until mastery. So, strep is believed to be the culprit that sets PANDAS in motion. Is it only a certain strain of strep that can do this? Cases of sudden onset are documented at ages that are so old that we surely could assume that a child had been exposed to strep before 5, 7, 10 years old. So, is it probable that the 10 y.o. who has sudden onset OCD has most likely been exposed to strep multiple times before in their lifetime, but never before by the strain that triggers PANDAS? Am I understanding this correctly?

 

If it is a certain strain of strep, what happens when a toddler or preschooler gets this strain of strep that puts PANDAS into motion perhaps with no symptoms of being sick? Could they begin to display repetitve OCD behaviors that parents notice, but monitor to see if it is just another developmental phase? The rough period subsides after weeks or months, there is some equilibrium and then the odd behavior starts up again. Maybe parents talk themselves into believing, they've outgrown this before, it's a phase, they'll outgrow it again. He/She is only 2, 3, 4.... now we don't have sudden onset. Now we have a child who has always periodically had an obsession with rocks, with arranging 100 legos in a perfect square, with picking the wallpaper off the walls, with playing "mommy" cleaning everything, ect. on top of other typical, but difficult preschool behaviors like hyperactivity, separation anxiety and on and on. Sometimes they are really good and not having any of these problems (parents know that normal kid is in there), but there have been these concerns all along.

 

Perhaps these parents cannot identify a sudden, debilitating onset, but then their child has a really bad period that separates their child's behavior so far from their peers, the child is debilitated. The pediatrician has noted concerns for years, no sudden onset, no history of strep. The parents are sent to take the child for a psych. consult where one med trial is suggested after another, different doses, different combinations. The meds don't work, the child just gets worse and worse over time.

 

How do we prevent scenarios like this with the current, narrow criteria? What safeguards can be put in place if we don't convince pediatricians to rule out infectious/autoimmune etiology at least prior to the psych referral or as standard protocol to the developmental evaluation? I just don't think the above scenario is that uncommon or that difficult to imagine happening.

 

Please share your thoughts. These parents want their kids back from PANDAS just as much as those whose kids weren't infected until the child was so old that the sudden onset was obvious.

[matis_mom]

I just have to chime in... That sudden-onset thing is so tricky. Looking back at the medical records, I realize DS12 started with this PANDAS thing FOUR years ago, but the symptoms did not become marked enough until last year. Reading other parent's posts, other children's symptoms I'm like, "yeah, I remember that," but I never would have thought anything of it when it happened, other than thinking he was just tired or "artificial". Some of the symptoms I did wonder about and brought it to the pediatrician's attention, and of course they gave me the, "kids just get that" response. How many years of medical school and you give me "kids just get that?" Makes me mad every time I think about it.

 

And then there's the whole thing of not wanting to prescribe antibiotics for a long time, but they are ready to refer you to a psychiatrist for anti-depressants or who knows what other psychotropic drugs, as if there was no risk to that!

 

Even the doctor who diagnosed our son with PANDAS, who would not consider steroids, referred us to a psychiatrist for some anti-anxiety meds. That's when we decided before going to a psychiatrist we would consult a neurologist, and thanks to Diana we ended up at Dr. Latimer's office And even though he is not "cured" we definitely have this under control and are confident he will at some point be "free"

 

It just breaks my heart to think of all the families that will waste precious time because their pediatricians either 1) never heard of PANDAS; 2) have heard of it but don't believe in it; 3) know what it is but have no clue how to treat it.

Edited April 7, 2010 by mati's mom