Panda or tourette? Or both? Confused

[Mummadragon]

My 7yr old daughter who has been for the most part a happy-go-lucky little girl suddenly started extremely acting out aggressively with both friends and family and started straining her neck to the side involving her shoulders and later her arms and making a very strained grimace. We took her in to family doctor who immediately call ped on call and got her in the next morning. They took a swab on her throat and blood work and came back positive for step. She was put on 10 day course of antibiotics and clonidine. The first few days she showed amazing improvement but slowly the tics stayed coming back then the day after the antibiotics ended the tics came back twice as bad plus now she has a forceful blinking. It is constant. Probably at least 20 motions a minute all day long. I took her back to doctor who did another swab and he said it was negative so we might have to consider that instead of pandas she might have tourette syndrome. I'm so confused about all of this. I have four children and have never had to manage these extreem behaviors, the emotional/social trauma my child faces every day. I don't even know how to advocate for her with the doctors . Any and all advice is greatly appreciated.

[GMT111]

Definitely sounds like PANDAS or PANS (or both) you can see the diagnostic criteria here: https://www.pandasppn.org/ppn-pans-diagnostic-guidelines/

you will also discover that tests often come back negative when there are in fact infections. Some other really useful groups are:

https://www.facebook.com/groups/P.A.N.D.A.S.International/

https://www.facebook.com/groups/pandasparents/

 

Don't give up on it, the more you read the better you'll understand, you will get support and if you're in the US will be put in contact with a specialist who understands and can treat. Good Luck and all the best.x

[GMT111]

The previous link I gave you was the PANS diagnostic criteria for PANS only, don't want to over burden you but this is the full web site for PANDAS/PANS https://www.pandasppn.org/

Your daughter really does need anti-biotics I suspect.

[boysrlove24]

She was put on 10 day course of antibiotics and clonidine.

Be careful with docs prescribing clonidine for tics. Before we knew my son had PANS from Lyme a neurologist was trying to treat him for a tic disorder - she prescribed clonidine, which only made him worse -- so she kept bumping up the dosage. When we got past adult level dosage she then moved him to Risperdal and eventually added guanfacine. This went on for a period of about 3 months during which time my son spiraled so far down that I was very scared. We moved on to an integrative medicine doctor that removed all of the poison (her words) and began treating him for PANDAS and eventually tested him for Lyme. He is still battling lyme but at least looks and acts like himself again. Clonidine, Risperdal, Guanfacine...may be helpful for the right situation but they are not treatments for PANDAS/PANS and will only make your child worse. Try to find a good integrative medicine doctor or PANDAS specialist to get your daughter on the right track.

[ejh]

It sounds like PANDAS/PANS to me. My son had a PANDAS episode following a strep infection and his pediatrician diagnosed PANDAS and prescribed antibiotics. The day after the antibiotics were finished my son had another episode. I took him back to the pediatrician who swabbed his throat and then said it was negative so it was no longer PANDAS but a psychiatric disorder and he needed to see a psychiatrist. Fortunately I happened to know about PANDAS so I ignored him and took my son to a pediatrician who is knowledgeable about PANDAS. He prescribed longer-term antibiotics and steroids and recommended further treatment (tonsillectomy and IVIG). It is now a year later and my son is doing so much better. Pediatricians often don't know enough about PANDAS/PANS unfortunately.

[evolveme]

I realize I'm late to the party on this one, but only just officially joined the site and am searching through community posts for others with similar questions/issues.  Came across yours, Mummadragon, and have to respond... (although I recognize that you've probably made progress since then).

My story: son dx of PANDAS at 2/3 (now 8).  Spent several years alternately trying to keep him strep free (tough, since exposure alone was enough to provoke PANDAS episode) and filling him with abx to deal with actual strep infection.  Thought he was growing out of it, as his attacks became less frequent and behavior less extreme.  And then BAM, tics returned and never went away.  He has had tics, more-or-less constantly, for over a year.  He always did have mild OCD as part of his PANDAS, along with anxiety.  Then AD/HD-like behavior started creeping in slowly last fall (we have yet to get official dx). 

Tics that have just appeared (regardless of their cause) DO NOT meet criteria for Tourette.  If the tics/other behavior were sudden-onset and associated with strep, you're likely dealing with PANDAS.   A child has to have vocal and motor tics for a year or more to meet criteria for TS.  And I HATE this diagnosis... not because I can't stand the idea that my son has TS (although I can't, and that's another story), but because it is a purely descriptive diagnosis that tells you NOTHING about the underlying cause.  It's analogous to diagnosing a baby with colic - it is a description of behavior: crying for so many hours a day for so many days each week - and tells you NOTHING about why your baby is so miserable.  

If I were in your shoes (and I say this with the benefit of ~5 years of hindsight), I would say fight like crazy to do everything you can to find the underlying cause.  Although there are a handful of researchers who are starting to associate PANDAS with TS, in general the PANDAS people do not work with the TS people, and they have entirely different approaches.  I'm now in a fight with my local peds neurologist who refuses to acknowledge that my son's PANDAS has any association with what he recognizes as TS, and who wants to throw my son on to the neuropsych medication carnival ride.  I do have him on a low dose of guanfacine (Intuiniv) to take the edge off his tics and AD/HD-like behavior pending a more certain diagnosis/way forwards.  But don't imagine for one second that your typical run-of-the-mill neurologist will work with you to figure this out.  Oh, and 10 days of abx after a major first attack like the one you described is not gonna cut it... Hope you've made progress in the last few months...