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Albymom

Difference between "normal" OCD/Tourettes/ADHD/Anxiety & PANS/PANDAS?

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Hi

 

We have our first appointment with PANS experts on Thursday. In the meantime, we are taking life moment by moment and doing a lot of deep breathing.

 

I am wondering exactly how doctors and researchers can tell the difference between "normal onset" OCD/Tourette's/ADHD/Anxiety kids and PANS/PANDAS kids.

 

The only difference I have found seems to be related to the speed and severity of symptom onset, but according to the pansppn.org site, even the symptom severity seems to be subjective, ranging from acute to mild/functional (see Treatment Options>General Overview).

 

If PANS can be "mild", and if it can be a clinical diagnosis, and if it does not necessarily require infection-positive test results, wouldn't it follow that PANS treatments could work for most/all kids with this cluster of issues?

 

I guess what I'm asking is this: if non-PANS kids can (and do) present with the same symptoms, wouldn't it also be true that their bodies are "malfunctioning" in the same ways as PANS kids? If so, what are the clear biological markers differentiating these two sets of children? I remember reading somewhere that an MRI can illuminate the difference but as you can imagine, the last three months have been a total blur. I feel like a boxer who keeps trying to get up but who keeps getting punched with another diagnosis.

 

Another way of asking the question is this: how are non-PANS kids usually diagnosed with this cluster of diagnoses? Does it normally take years between each diagnosis?

 

Thanks in advance for your thoughts. I have already learned so much by combing through this forum!

 

 

 

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I think that the distinct marker of PANS vs "garden variety" disorders (OCD, ADHD, etc) is the sudden onset of symptoms that cannot be explained by other diagnosis. Take my dd9 for example- September 2013- perfectly fine. Happy, social, normal child. Yes, she had "OCD tendencies" like her father, and was a bit nervous/anxious, but overall she was just fine. Mid October- upper respiratory infection followed by sudden refusal and rejection of many foods previously enjoyed..... By November, down to 2-3 foods only, raging episodes, school refusal, extreme anxiety, depression, aggression, sensory issues, skin-picking, etc., etc. it wasn't until January that I figured out what was happening to her.... She began treatment... In March I got her into Yale Child Studies. They tried to tell me that she "just had OCD".... Seriously???!!!??? A 7 year old (just before she turned 8) who loved school so much shed wished there was no such thing as summer vacation, suddenly refusing to go to school? Going into a 2 hour rage because she didn't like my haircut? Suddenly Completely restricting food to the point where she literally didn't put a single bite of food in her mouth for TWO WEEKS? (And continued not eating for 8 months) picking the skin on her fingers until they were raw, screaming that she hated me because I asked her to turn the tv down? All of this when not a single thing had changed in her life, other than her? No way.... I knew something had happened to her.

Most Pandas/Pans kids have been brought to numerous doctors and specialists because something "happened" to them- in other words, it's not a build up to something, it's a marked change in the child that you didn't see coming.... Like I said, my dd had exhibited anxiety and nervous behaviors prior to her PANS exacerbation, but when the exacerbation started, it was different.... She was different. Specialists may not be able to diagnose that difference, but parents usually can ;) it's not part of who they are, it's something that's happened to them, if that makes sense. -- just my thoughts on your question. :)

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Ps. Regarding the part of your question re: non-Pans kids being treated for their "malfunctions" or symptoms- I think that you would probably find that most Pans specialists (like my dd's) come from the camp that most neuropsychological issues/disorders are likely physiologically based.

 

I am obviously far from being a doctor or researcher, but from all of the reading and research I have done since my daughter's onset in 2013, I'm beginning to question if there are such things as "garden variety" OCD or anxiety disorders? I just don't know.... But either way, there is a distinct difference between Pans and that anyway...

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Thanks, Beerae22.

 

Your story mirrors mine almost exactly -- OCD, anxiety, the skin picking(!), the irrational irritability, the severe anxiety -- today she hid herself in a towel when walking into swimming lessons, then refused to go into the pool because "other people might be looking". She has always LOVED swimming! She has always loved the pool. Then tonight she cried because dropped her ice cream sandwich on the table then cried because "now it has germs". This is the first I've heard of the germ phobia and my stomach dropped, because I know it's another symptom. Later she told me she hated me. Then she told me she wanted to die.

 

This is a kid who was generally NORMAL all her life until around February when BAM - four diagnoses within three months! ADHD, Anxiety, "piano playing" hands, OCD, rage, Tourette's. Yes, she was on the shy side but the word "anxiety" had NEVER entered my mind before. She never refused to do things. Last night she told me "Mommy, I don't feel well. I feel emotionally and physically not good. I feel wonky." I had to catch my breath and remain calm in front of her but I felt so helpless.

 

Every time I sat with a separate specialist giving me yet another diagnosis I felt like they were not HEARING me in terms of how devastating and confusing this is. I felt like they thought I was a crazy, over involved mother. I even questioned my own sanity at one point. The night I read about PANS I got chills. I feel like I just "know" it is PANS/PANDAS. But then of course I wonder whether all other parents of "garden variety" kids with these diagnoses feel the same way.

 

Tonight it feels like you and maybe the other parents on this forum are the only people on this planet tonight who truly understand what is happening to my child and me. I feel like I am going insane! I had to start seeing a therapist 4 weeks ago because I simply could not process all of these diagnoses, each one so completely out of the blue. I can't believe I am sometimes afraid of my own child. She is and has always been the sweetest, sweetest child. I feel like tears are always just beneath the surface of my veneer every day, and I am otherwise a pretty happy and normal person! It HAS to be PANS. None of it makes sense otherwise.

 

I'm so sorry to vent. I am holding on by a thread at this point. I'm trying so hard to stay calm and loving when my daughter has her "episodes", I'm working hard to shield my husband and family from the details of what I am witnessing but lately I feel like I'm "leaking" all over the place. I've been tracking her behaviors for the last month to identify patterns or triggers and it's clearly getting worse. The germ thing tonight felt like the last straw. I am literally counting the hours until Thursday's appointment, even though I know it will still take a long time for more tests, etc. I don't know how much longer I can hold on knowing that my child is clearly suffering. I need some help, but I don't want to leave anyone else with my daughter because I am probably the only one who understands her at this point.

 

Thank you for listening. It helps so much to post. It really does.

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I think it is the severity and onset on the symptoms with no other cause. My daughter was a happy child who had mild anxiety issues but never impacted her life. She got sick before Christmas and overnight changed into a anxiety, moody, aggressive child with severe OCD. Once on antibiotics, her symptoms went away. All of this together lead to a PANDAS diagnosis.

 

As a teacher, I teach kids with anxiety, OCD and ADHD and I think the difference is their symptoms are not associated with illness and they do not come on rapidly. Most of the children have suffered from these issues for years and over time they get diagnosed.

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Based on our experience, I frankly have to question the reality of "normal" or "regular" OCD/ADHD/Tics, etc.

 

My DS was diagnosed with "regular" OCD at age 6, basically because 1) we couldn't tie it to strep because he is asymptomatic in a classic sense, and 2) no one in our area was on board with PANDAS/PANs at that point in time (2003), even if we HAD had that link. So he was treated with therapy and then eventually SSRIs for 6 years until he had a decline so dramatic, and so rapid, that neither therapy nor drugs could address, and that sent me running for answers "outside the box." By that time, PANDAS was a little more well-known in my area (though not generally accepted), and Beth Maloney's book, "Saving Sammy," finally gave me another living, breathing example of a kid who was classically asymptomatic for strep and yet was suffering from PANDAS by virtue of strep's impact on his immune system. Sammy and my DS appeared to be carbon copies of one another.

 

So, we did finally find someone who would help us, we found not only high strep titers but rising titers, and a 30-day abx trial had a remarkable, positive impact on him. As did several additional months of abx therapy, along with ERP. If not for the PANDAS treatment (i.e., abx), I know we would not be where we are now . . . which is a good, happy, fully-functional place.

 

Meanwhile, for all the 6 years during which we met with doctors and therapists, attended conferences regarding, and read research regarding OCD, we were told repeatedly that no one really knows for certain the "origins" of that disorder. They've found a gene expression in dogs, they're conducting genetic research in humans, they're increasingly focused on brain glutamate, but still, no definitive information. And yet, early in our PANDAS journey, the one thing many, many of these folks were readily willing to state is that infection/autoimmune function was NOT behind OCD. How they could so readily dismiss that as a possibility when they had nothing to put in its place, I will never understand.

 

I do believe that there is a genetic component, or a pre-disposition. But I also think, given all the evidence in the last several years brought to the table by folks on this forum, the NIMH, the IOCDF, we're only a decade or so away from the western medical community at large finally recognizing that infection and immune response is THE primary force behind the ultimate expression of any number of mental disorders, including OCD, TS, bipolar disorder, etc.

 

So, my DS's "onset" was sudden at 6, but it wasn't especially dramatic. His decline at 12 was both sudden and dramatic, but by that time, he'd had his "regular OCD" diagnosis for several years and even many of the PANDAS "experts" were wary of diagnosing him with such because of that extended history. I do recall having notes from a panel discussion with Sue Swedo, however, at which she opined that a dramatic increase of a Yale-BOCs score, even if it was above the non-clinical range to begin with, could be indicative of a PANDAS episode.

 

In the end, I embrace most of the experts' statement that this has to be a "clinical" diagnosis. What is the patient's history? Can you tie any particular changes in temperament or behavior to an illness, exposure to an illness, etc. Does abx have a positive impact? To me, that's key.

 

Keep an eye out, journal EVERYTHING if you can, trust your gut.

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I would also extend the suspicion of PANDAS beyond those sudden changes. True my daughter had a sudden change which brought on significant issues; she was diagnosed with PANDAS. My son also has PANDAS, however he exhibited waxing and waning symptoms which grew in severity over several years. And in hindsight we saw the same thing with my daughter for years before diagnosis. Many of these changes are complicated by early age of onset. We saw PANDAS in those early years as ADHD, ODD and inappropriate behavior.

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It seems more than coincidental that so many PANS/PANDAS kids have positive Bartonella tests . My kid's came back positive the first try. Not happy to have such an infection, but it helps to know what infection to fight.

Can you tell me more about your children. My son was tested this summer with a +Bartonella test with Dr. B's office(working with his partner Dr. K). We started on Arithro and Bactrim and I saw an overall increase in his tics( with ups and downs) over the 1.5 months he was on these meds. In the meantime with did Igenex testing. We just got the results last week and they came back negative for Bart, inconclusive for Lyme, and + Erlichiosis. I am totally confused! The doctor could not explain the inconsistency. Prior to the recent results she did suggest switching to Doxy in case we were dealing with a different infection. Tics have slightly decreased overall, but continue to be up and down over the past 3 weeks on Doxy. Maybe these have nothing to do with the TBDs we may be dealing with. I just wish we could be sure we are on the right track. We have been dealing with motor and throat tics for over 3 years now:( I know we are all on a challenging journey...do you have any insights???

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It seems more than coincidental that so many PANS/PANDAS kids have positive Bartonella tests . My kid's came back positive the first try. Not happy to have such an infection, but it helps to know what infection to fight.

Can you tell me more about your children. My son was tested this summer with a +Bartonella test with Dr. B's office(working with his partner Dr. K). We started on Arithro and Bactrim and I saw an overall increase in his tics( with ups and downs) over the 1.5 months he was on these meds. In the meantime with did Igenex testing. We just got the results last week and they came back negative for Bart, inconclusive for Lyme, and + Erlichiosis. I am totally confused! The doctor could not explain the inconsistency. Prior to the recent results she did suggest switching to Doxy in case we were dealing with a different infection. Tics have slightly decreased overall, but continue to be up and down over the past 3 weeks on Doxy. Maybe these have nothing to do with the TBDs we may be dealing with. I just wish we could be sure we are on the right track. We have been dealing with motor and throat tics for over 3 years now:( I know we are all on a challenging journey...do you have any insights???

 

All I know is that we luckily got two positive tests, FISH and IGG IGM back on the first try for Bartonella from Igenex. I do not know what the a+ test is. I have heard over and over that it is very hard to get a result, and that is why Galaxy does the MWF blood draw. Is it possible the increase in symptoms are a herx? I would talk to Rowing Mom here on the forum her DD had Bart with tics and she ended up treating for Babesia as well, and then there was real progress with symptoms.

 

Right now we are using Ceftin, and have a script for Mino and Ripfampin, and we have not started it yet. We are a little nervous about the Minocyclin and Rifampin side effects, have an appointment Monday and want to switch to Azith and Rifampin or Azith and Bactrim to start.

 

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Can you tell me more about your children. My son was tested this summer with a +Bartonella test with Dr. B's office(working with his partner Dr. K). We started on Arithro and Bactrim and I saw an overall increase in his tics( with ups and downs) over the 1.5 months he was on these meds. In the meantime with did Igenex testing. We just got the results last week and they came back negative for Bart, inconclusive for Lyme, and + Erlichiosis. I am totally confused! The doctor could not explain the inconsistency. Prior to the recent results she did suggest switching to Doxy in case we were dealing with a different infection. Tics have slightly decreased overall, but continue to be up and down over the past 3 weeks on Doxy. Maybe these have nothing to do with the TBDs we may be dealing with. I just wish we could be sure we are on the right track. We have been dealing with motor and throat tics for over 3 years now:( I know we are all on a challenging journey...do you have any insights???

 

For DD13 (now in remission for 2 years), ticcing started overnight, about 1 month after her 7 year MMR booster (with tDap at the same time) and 2 weeks or so after an insect bite with atypical non-EM rash. Some of her other PANS symptoms had been going for a while.

 

As we have gone through the process of treatment for lyme/bartonella/babesia I have kept a daily chart/bar graph of protocol change vs symptom level.

 

By looking back at these charts throughout treatment it was obvious to me that DD's ticcing was associated with bartonella die-off toxins - ie part of a herxheimer reaction. It has never been associated with babesia die-off, but declined with babesia treatment as her body became healthier and more capable of detoxing.

 

I would research detoxification and especially the possibility of MTHFR deletions. Search the forum for LLM's archives on this topic.

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One quick update, I've learned from Dr Swedo's 2014 West Coast PANDAS Symposium talk that Cunningham Panel results seem to indicate that PANDAS kids tend to have higher Cam Kinase II scores than non-PANDAS OCD kids. This coincides with our CKII scores.

 

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One quick update, I've learned from Dr Swedo's 2014 West Coast PANDAS Symposium talk that Cunningham Panel results seem to indicate that PANDAS kids tend to have higher Cam Kinase II scores than non-PANDAS OCD kids. This coincides with our CKII scores.

 

 

Yes, Albymom, presuming you accept the premise that there is any division to begin with. But it's also possible that CamKII scores vary among the population for reasons other than these kids being "PANDAs" versus "non-PANDAS" OCD sufferers. The research remains in its infancy, and while it's helpful to those who, like you, can demonstrate high CamKII scores and therefore avail yourselves of some PANDAs interventions, it may be a disservice to other families for which that relationship is not demonstrated but may still be suffering from PANDAs/PANs. We've seen this -- and documented it -- with respect to titer levels and rising patterns and PANDAs; some kids don't mount an antibody response that is measurable and thus recognized as a sign of PANDAs/PANs, but that doesn't exclude it as a possibility.

 

As you read and review the research that's been mounting over the last several years with respect to the origins/drivers behind both OCD and PANDAs, you might be struck by some of the "coincidences" and cross-overs that even the researchers, focused as they are on their specific corners of that universe, don't immediately recognize. For instance, Swedo has included in some of her presentations in the past (haven't watched the 2014 one as of yet) a scan image of a boy with PANDAs whose caudate nucleus and putamen (brain sections) were enlarged, "swollen," prior to plasmapheresis, and then were reduced to "normal" size following the plasma procedure; his OCD behaviors were also significantly reduced following the procedure. Halfway across the country, meanwhile, Dr. David Rosenberg at Wayne State University Medical School was conducting research on pediatric OCD and, through PET scans, came to discern that the caudates of children with OCD contain higher concentrates of the neurotransmitter glutamate than do the caudates of non-OCD kids. So, is it a coincidence that the caudate is impacted in both PANDAs and "regular OCD," or did Rosenberg's sample of kids inadvertently include PANDAs kids that he didn't recognize as such?

 

Has anyone else read Howie Mandel's autobiography, "Here's the Deal: Don't Touch Me!"? In it, Howie tells a story about this strange malady that struck him as a young boy where, on a vacation (to the beach, as I recall), he came down with this "infestation" of small, parasitic mites of some sort that burrowed under his skin, the treatment for which was painful and prolonged. It was shortly thereafter that his OCD began to rage, and he remains impacted by it today, 40 years later. Again, coincidence?

 

Given as many of the "mental illnesses" that have been identified by medical science over the last several decades as yet have largely unknown origins, and based on our personal experiences, I continue to encourage anyone who's child suddenly manifests with a "mental condition" to explore and exhaust physical medical causes or contributors.

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If OCD is a symptom of PANDAS, wouldn't it be possible for caudate nucleus and putamen to become enlarged in response to strep and then recede when the infection was cleared and the antibody levels returned to normal levels? The theory is that the OCD in PANDAS has a different cause than garden variety OCD (which may actually have many causes). I remember Sue Swedo talking about an early IVIG study which failed to show any curative effects. In hindsight, the researchers have come to realize that the results weren't valid because the subjects in the study weren't well screened. More recent studies clearly indicate that IVIG and plasmapheresis are only effective at treating infection driven OCD. Children who don't have infectious triggers don't show any improvement after receiving these therapies. The same is true of antibiotic therapy, despite the fact that some antibiotics have anti inflammatory properties. Garden variety OCD can't be cured completely with antibiotics and isn't impacted by anti inflammatory medicines. Also, while regular OCD may wax and wane, PANDAS OCD remits entirely only to return again if the child is reinfected.

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