Pandas without tics??

[SullysMom]

My happy go lucky 7 year old son started having irrational fears of choking.  The 1st episode started on Sept 1, then went away for a week, the 2nd was a week later and the 3rd on Sept 15.  Since then he has not eaten any solid food.  He is surviving on pudding, yogurt, ice cream, tomato soup, vanilla shakes and pediasure. About 3 weeks after this started, the pediatrician took a strep test (not because he was complaining of a sore throat, but because she said his tonsils looked enlarged) the rapid test was negative but the one from the lab came back positive.  Besides the choking fear,  his whole personality seemd to change overnight, he suddenly was freightened by everything, suddenly began having panic attacks and moderate to severe seperation anxiety.  It was not until I googled anxiety and strep did I learn about the whole world of Pandas. He was put on 10 days of Amoxicillin.  The anxiety seemed to get a lot better but the choking fear did not.   I went back to his pedicatrician and asked her about Pandas.  She actually chuckled and said it was not a real disease and that she would never feel comfortable giving abx long term. She diagnosed him with anxiety and wanted to give him an SSRI - claiming he just needed 'to get out of his head'  I refused the medicine and said I wanted to look into physical reasons first.  I then took him to an ENT to make sure it wasn't something physical.  She said it could be GERD but that since he just finished getting over strep, she could not scope him for a few more weeks.  I then took him to a feeding therapist.  She brought up GERD and possibly EOE.  She suggested I take him to a GI doctor.  I then tried a new pediatrician and although she has heard of Pandas and believes it is a real thing, because he is not exhibiting any motor tics, she doesn't think this is what he has.  She took bloodwork to check for celiac, lyme and did a basic CBC panel.   All came back normal.  She also said she wants him to see a GI doctor and thinks it could be EOE making his throat feel tight and that the anxiety came after because he really feels like he is choking.  When he is distracted, he is happy, laughing, normal.  He has been going to school although some days it is a struggle to get him there (this was a kid who always loved school and never gave me a problem)  He plays on a soccer team and has plenty of friends.  But when he is not busy, his mind starts wandering and he tells me he is scared.  When I ask him 'scared of what' he says 'choking'.  I did make an appt with Dr B but it is not until a few more weeks.  My questions are - can a child be diagnosed with Pandas in the absence of tics?   Does this sound like Pandas?  For those that have seen pandas first hand, did the symptoms fade with your child was busy and distracted?  How can I tell if this is plain old anxiety?  

[MomWithOCDSon]

With the temporal relationship of the onset of the anxiety and a positive strep test, it certainly seems likely that this is PANDAs.  And yes, tics are one symptom, but not necessary for a clinical diagnosis.  My DS had only OCD and anxiety for the most part; tics only factored in at the height of his worst-ever episode and, even then, I'm not sure that I would've recognized them as tics had it not been for this forum and some of the other families' input here in that regard; they weren't "quick" or "jerky," but more complex, such as dragging his left leg behind him when he walked at times.

And yes, to some extent, especially early on, my DS's OCD and anxiety would virtually disappear when he was doing something he enjoyed or was well within his comfort zone.  It wasn't until later, when he'd gone untreated for a long time (initially, we couldn't get a positive strep test or locate a medical professional who would acknowledge PANDAs as a viable diagnosis), that the OCD and anxiety became so strong that they pushed out even those activities he enjoyed.

I'm glad you've got an appointment with Dr. B; in the meantime, is there any chance you could have the antibiotic prescription for the strep refilled to tide you over until your Dr. B. appointment?  If so, I would try that and see how your DS responds . . . see if his anxiety and fright responses fade even further. 

All the best to you!

[Annieo]

I read here all the time, but it's been a very long time since I've posted. My 8 year old daughter has the same symptom as your son. Her "chewing problem," as she calls it, started last March and then went away after a couple months. It's back again, but not as bad. It's not an issue at all until it comes time to eat (she laughs and plays and is completely normal), and then it doesn't seem to be an issue every time she eats. It can go away for several days, or even months, and then come back again. I haven't figured out a pattern.

How frustrating to have a pediatrician tell you there's no such thing as PANDAS. I'm glad you got a new one. Anxiety doesn't come on so suddenly. PANDAS is real. My daughter has a whole list of symptoms, but no tics. They came on suddenly after a strep diagnosis, but the most serious symptoms have gone away. If she gets a fever, whether strep or not, I know we'll have a resurgence of symptoms. She's not on long term antibiotics because the symptoms dissipate on their own. That's not to say I wouldn't consider it in the future.

Keep digging. Keep trying. I think you're on the right track!

[andyjeanne]

PANDAS can ABSOLUTELY happen without tics (and my son also only displays OCD).  Also, the food avoidance is one of the very common types of OCD associated with PANDAS and one of the more dangerous ones.  Everything you describe sounds exactly like what we experienced and given the positive strep test I'd be amazed if it wasn't PANDAS.  Share the diagnostic criteria with your pediatrician and point out that it must involved OCD and/or tics, not necessarily both.  

https://www.pandasppn.org/ppn-pandas-diagnostic-guidelines/

Also here's a great video describing diagnostic criteria and a lot more about PANDAS from the standards of care summit:

https://www.facebook.com/PAScares/videos/969080689888994/

You also might direct your ped to the treatment guidelines published this year:

http://www.liebertpub.com/global/pressrelease/revised-treatment-guidelines-released-for-pediatric-acute-onset-neuropsychiatric-syndrome-pans-pandas/2223/

a lot of these kids need a longer/different type of antibiotic to clear the initial infection completely, even if they don't do long term antibiotics.  Also, symptoms may come down slowly even after the infection is totally cleared which makes it hard to know if you need to do more.  Glad you're getting to a PANDAS doc soon.  In the meantime you might also see if any of this improves with ibuprofen.  NSAIDS are helpful for some of these kids since the root cause is inflammation. 

 

 

[bobh]

"I wanted to look into physical reasons first" - good for you.  I do feel sorry for those that trust every word of a doctor as gospel truth, and give up on thinking.

I agree with MomWithOCDSon - the timing of all these factors together (including the separation anxiety, which is a common symptom) are key here.  It is very unlikely to be a co-incidence that these things just happened by chance together, without being tied together (by PANDAS).

If you haven't already found http://www.pandasnetwork.org/  and https://www.pandasppn.org/ , spend some time there - these are solid resources backed by a stellar advisory panel.  And to understand (at least partly) why some doctors refuse to acknowledge PANDAS (if that bothers you), you can check out the documentary My Kid is Not Crazy.

Edited October 31, 2017 by bobh