[Dr. L or Dr. T?]

Thanks for all of the input. Dr. L seems to come highly recommended. I am, however, concerned about Dasu's comment that she diagnoses traditional PANDAS and does not treat infections other than strep. My daughter's biggest flare came with a coxsackie and EBV infection, so we would want someone who readily diagnoses PANS but also knows how to treat viral infections (if needed).

[Dr. L or Dr. T?]

We will be planning a trip to a specialist to have our daughter evaluated for autism and possible PANS. If she does have PANS it would not be a "textbook" case, but we really need someone who is willing to think outside the box about what might be the underlying cause of her challenges and how we might treat them. We are leaning toward Dr. T because he seems willing to leave no stone unturned and consider all possibilities. However, Dr. L's location is much more convenient for us. Visiting either one will be a sacrifice for us, so I want to make it count. In order to make the best possible decision for our daughter, I would truly appreciate any input about what we might get out of an evaluation with these two doctors in terms of the tests each typically runs, the types of treatment each is most likely to prescribe, how conservative each is in making diagnoses, or general recommendations. Please feel free to PM me if you prefer. Thank you in advance for your help.

[PANS after autism?]

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.

[Connections to sibling- off topic, but you all seem to know about everything]

Have you looked into Ehlers Danlos Syndrome? It is more common among females, but your comment about him being double jointed surely made it spring to mind. Many with EDS have autistic traits as well.

[PANS after autism?]

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!