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New here and a few questions

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Hi All,

First of all I just wanted to say I don't wish these circumstances on anyone but it is a relief to know I am not alone with what my daughter, aged 4 is going through. A little back ground: Last Spring when she was 3.5 years old, out of the blue, my daughter started repeating the same question over and over (related to a sudden fear something was wrong with her foot). If it were possible to count how many times she'd said it, It wouldn't surprise me if it was in the thousands per day. Every moment of everyday she spent checking her feet, unable to wear shoes. Before we knew it we were home bound. The episode lasted from April to Late Summer. She was diagnosed with OCD from a child psychiatrist. I didn't know about PANDAS at the time until I spoke with the school psychologist the following fall. He thought it sounded like it, but she never had strep that I was aware of.

From the beginning of the last school year until this April (again) she was back to her old self. Then out of the blue on April 1st, the OCD came back. The same exact fear as last time. The repeating, the questions and the fears all came flooding back. She developed rituals with everything. We were home bound and she could not function at school at all, so I pulled her out. She would not touch water for fear it would take her skin off, could not wear shoes because she took them off every minute to "check".

Knowing about PANDAS now I contacted her pediatrician who did a throat culture for strep but it came back negative. She referred us to a neurologist. The next step we were going to consider Zoloft because of how much her life deteriorated. She was nut functioning like a normal 4 year old should.. not being able to leave the house or think about anything other than her obsessions.

Well, the neurologist did a lot of lab work and all the strep titers came back negative. However, it showed an active or recent mycoplasma pneumonia infection as the levels were very elevated according to the nurse. I do not have a copy of the labwork yet.

My daughter hasn't been physically sick for a very long time.. Not even a sniffle for at least a year or more. However, the Dr. wanted her to get a Chest X ray despite not having symptoms.

Is it possible to have an active infection with no symptoms?


Also, the start of the episode was April 1st and by the beginning of June she has been back to her old self again. Like magic. It's like it slowly, gradually got better and now she is smiling and can't wait to start school in August. She is a completely back to normal. I am baffled. Back in April it felt like my world was ending, our lives were so completely turned upside down that It felt like it would never get better and that she'd never function normally again or be able to go to school.


So now, I am wondering if the mycoplasma infection could have caused the most recent outburst? Or, is it a coincidence and she has regular "OCD"...

We have a follow up appointment in August so I guess we'll see what the Neurologist has to say.


It is hard to live with this fear.. wondering when it's coming back.

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Two things jump out to me with your post based on our experiences with PANDAS, then lyme, bartonella all in 3 months time:


1. Did they test for Bartonella when they tested for other coinfections. Did they do a CD 57 through Labcorp? Alot of feet "things" in my son.......plus an extremely low CD47 were clinically suggestive of Bartonella. Although I would have no idea why the bartonella would only come out in April. Probably not likely.

2. The lyme practitioner we are seeing said that sometimes it is only after treatment that you start testing positive for coinfections.

3. Finally, several other moms have shared and I have read that bartonella can look like PANS. I suppose this is probably true of other coinfections like Myco....hence, PANS.

4. I wonder if you can have dormant mycoplasma that is activated by a stressor in April....maybe allergies stress immune system in spring and myco. comes out.....other moms familiar with Myco will answer.


Not much help but some things to think about.

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Welcome, sorry you had to find us, but you'll find a lot of great support here! There are several folks on here whose kids are PANS that is caused by myco p instead of strep.


My kids are classic PANDAS - reacting primarily to strep. With both of my kids - they do not show ANY outwardly noticeable physical symptoms of the infection. No fever, no sore throat, no upset tummies - nothing. You wouldn't know they were sick. They get purely PANDAS symptoms. The doctor can sometimes see some signs of potential infection (elevated heart rate, circumoral palor, high white cell count in the urine) - but nothing that the average person can see - or that the kids would complain about.


So I would answer your question that yes - it is possible, and often common - for kids with PANDAS/PANS to show no outward signs of infection (other than the PANDAS symptoms) even if they are sick. I should also point out that neither of my kids have ever had an elevated strep titre - even when the rapid and cultures came back positive.


You might want to try giving your daughter some ibuprofen next time she has a flare. For PANDAS/PANS kids it often helps lessen the severity of symptoms. It reduces the inflammation in the blood brain barrier which helps prevent/reduce the antibodies from crossing to the brain.


You could try that as a very un-official, un-medical test as well. If the ibuprofen doesn't work it doesn't necessarily mean it's NOT PANS, but if it does show improvement - you got a pretty good indicator that the problem may be infection/inflammation based.


For my kids - it's night and day when we slip them a motrin.


Hope some of this helps! Good luck!

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My only piece of advise would be that if the neurologist does not think it's PANDAS/PANS or know anything about how to treat pandas/pans then immediately find a pandas Dr. All the main pandas websites have lists of providers in your state. The choppy nature of the presentation in your kid, together with her young age and high myco p indicates pans for sure, you need someone who knows what to do (and they are hard to come by). But don't give up on this diagnosis, good luck.

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Absolutely on the mycoplasma causing a reaction for PANDAS. From my understanding, any infection (with or without symptoms) can cause it. Sinus infections from bad allergies are often a culprit in our house. My dd gets really sick every spring. Seek out a great PANDAS doctor. I think you are on the right track.

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