PANS after autism?

[SAND9417]

I am desperately searching for help for my 6 year old daughter, and I am hopeful that this community can help me.

 

As early as 6 months of age, I began to notice passing phases when my daughter was harder to reach (reduced smiling, eye contact, response to name). The phases would come sporadically (no more than once a month) and were brief (lasting a few days to a week). My husband, her pediatrician, and the developmental team that monitored my daughter due to her prematurity never noticed anything and were not concerned.

 

At age two and a half, the developmental team identified some soft markers for autism (reduced eye contact, some echolalia, some hand flapping). We had my daughter formally evaluated, but she did not meet the diagnostic criteria for autism due to a lack of repetitive/stereotyped behavior. However, because of her social deficits and quirky speech patterns, we began a program with therapists who felt confident she would be indistinguishable from her peers by kindergarten.

 

At age 4, my daughter came down with a coxsackie infection and also tested positive for mono/EBV. Within days of the illness, her existing autistic tendencies worsened, and she developed a host of new problems, practically overnight. She became anxious, depressed, emotionally volatile, and lethargic. She developed significant sensory sensitivities she had never had before. Her eye contact worsened and she lost many of the social gains she had made during therapy. Her passing phases of being hard to reach became constant, and she grew steadily dazey/spacey as if in her own world. In short, she was transformed from a child with manageable deficits that made her appear merely quirky to the casual observer, into a child whose challenges interfered with her daily life and made her easily recognizable as someone with a developmental disability.

In the two years since then, there have been stretches of time when she has made progress and we have been able to roll back some of the problems that came with the coxsackie infection (but never get rid of them completely or bring her back to the girl she was). But, these are always followed by a regression that brings setbacks and/or new problems. Sometimes, these regressions emerge over the the course of hours or even minutes, and my husband and I watch her fade away before our eyes. With several of these regressions, she has developed obsessive interests and a verbal tic in which she repeatedly whispers the last word or words she said after making a statement.

 

My question for you all is: could this be PANS? There is no doubt in my mind that the coxsackie infection irrevocably changed my daughter. However, she did not immediately develop the OCD behaviors that are the hallmark of PANS, and even now her obsessive interests and verbal tics are relatively minor. She also had some autistic tendencies even before the infection, and I have not read many cases of children with a preexisting developmental delay being diagnosed with PANS. Yet, so many aspects of her history (overnight change, ongoing episodic exacerbations, anxiety including separation anxiety, emotional volatility, depression, lethargy, poor focus/attention, urinary incontinence) point me to PANS.

 

It may also be noteworthy that at age two and a half (but after the first soft markers for autism were identified), my daughter developed a bulls eye rash and received two courses of antibiotics for probable Lyme Disease.

 

I'm in desparate need of a direction as I seek to help my daughter. Any and all opinions would be very much appreciated! Thank you!

 

[jan251]

The sudden onset and the urinary issues would be relatively specific to PANS, if I recall correctly. However, personally, I don't like the boxes we have in medicine. Looking at the big picture, it is obvious that the infection had something to do with the symptoms you saw. The connection is probably the immune system, i.e. inflammation, probably of a specific type. Immune and nervous systems are connected.

 

Especially considering the history of lyme, I'd wonder about the status of the immune system in general (blood tests) and whether the viral and lyme infections (and lyme co-infections) are still lingering (more blood tests). Whether to take a more immune system approach or an approach that focuses on the infections is impossible to say - there seems to be some disagreement on that among PANS/PANDAS docs - maybe both is the answer. The onion has several layers and there is no one route to wellness. I'd probably start with a PANS/PANDAS doc though many are not as experienced with lyme - it just depends. Maybe set up appointments with both a PANS/PANDAS doc and a lyme doc.

[MomWithOCDSon]

I second Jan's response, and I'll note for you that many PANDAs/PANs families have kids who, prior to and/or during PANDAs/PANs, had ASD diagnoses or "markers," or, at a minimum, some behaviors that pointed that direction. Now whether that's because ASD, at its root, is immune dysfunction related or if it's because kids with a genetic predisposition to ASD may also be genetically predisposed to immune dysfunction and disorders such as PANDAs/PANs . . . it may be decades before those connections (or lack thereof) are actually made.

 

My DS was "quirky" before the OCD or PANDAs showed up, including sensory issues, some Asperger's traits, etc. But in the PANDAs exacerbation that sent him over the edge, all of these tendencies because full-blown dysfunctions, and two of our doctors actually labeled him, for the first time "ASD" to go along with the "OCD" label, and even a PDD-NOS label (pervasive developmental disorder - not otherwise specified) appeared in some of the paperwork.

 

Finally, 6 years after the "regular OCD" diagnosis, a PANDAs diagnosis and treatment, and the ASD/Asperger's/PDD-NOS traits dissolved over time and the docs removed these terms from his charts. He still has a tendency toward anxiety and some OCD, but no one would think of him as ASD or PDD anymore.

 

So yes, personally, I think there can be (though not necessarily IS) a relationship, and I would explore PANDAs/PANs as thoroughly as possible while your DD is still quite young and therefore has an excellent chance of regaining any ground she may have lost to immune dysfunction.

 

All the best!

[SAND9417]

Thank you both for your replies and input. I truly appreciate it! MomWithOCDSon, I recognize a lot of my daughter in your description of your son, and his progress brings me some comfort. Thanks again.

[ejh]

I agree with what has been said. I also think at least some kids that are being diagnosed with autism actually have PANS/PANDAS. My son was diagnosed last year at age 12. He had not been severely affected until last fall but in retrospect clearly had his first episode at a really young age and had chronic symptoms (anxiety, serious problems with math, OCD, and around age 11 beginning anorexia-like symptoms) almost his whole life. He

[Sirena]

Dear sand9417,

 

Here's my 2 cents...the bulls eye rash history begs maybe the clue. Coinfections are VERY common and one of them, Babesia, is a malaria like protozoa that is reported to reduce the normal immune response. It is treated with antimalarials and abx. They can also form cysts and go dormant and then take advantage of times when the body is stressed to cause further havoc. So ds could have been fighting infection, holding it at bay and then system gets overloaded and wham - it's flare time. My advice, ask ped to run igenix full panels for Lyme and confections. If the turn up anything, then you have something actionable ( find llmd) and if not, you can move on with pans doctor.

our ds5 is on the spectrum. All this mess is exhausting.

 

Also, you may not be seeing overt compulsions so much-our sons are minimal--but the obsessive thoughts and other ocd anxieties were a lot worse than even I realized at the time of the onset bc I didn't know what to ask but his pandas knowledgeable psychiatrist did. Heartbreaking... Han in there

[sf_mom]

Our Boy/Girl twins had many Aspergers and ASD symptoms. DS was higher functioning with some OCD. DD was very similar to your DD with language regression at 2 1/2 years. At 3 1/2 years old they were both diagnosed with gestational Lyme Disease et al. They are now 9 years old and have been treated for chronic infection for last six years.

 

Our DS currently has no symptoms of Aspergers or PANS. He is still on a pulsed antibiotic therapy. He has low immune function that is improving. No one would ever know he had some many prior issues.

 

DD no longer has ASD symptoms. She is well recovered but still suffers from issues associated with her Bartonella 'Tick Borne Infection'. She has CVID and receives IVIg every 3 weeks as a result. We are hopeful she will have a full recovery from her remaining symptoms similar to her twin brother.

 

With known rash and prior diagnoses I would contact an integrative LLMD that understands PANS for further testing.