Tics only PANDAS

[tlreed]

Hi all, would love to have some educated input on what is going now with my 12 year old son.  Obviously you will need to hear his backstory!

When 9 years old, my son started one day out of the blue with a small facial grimace.  My husband and I just thought he was making faces, although the same one over and over, and of course told him to stop, which he he couldn't.  I'll always remember this because we were at one of his first swim meets for the season on a Saturday, and I thought he was just nervous, and it was a nervous tic.  Well, it didn't go away at all over the weekend, so Monday afternoon, after school, we are sitting in the pediatrician's office.  Her take was that it was a transient tic, however, she blew me away by suggesting the idea of strep-related tics.  I had obviously been scouring the internet looking for what this could be, and had read a couple of articles regarding PANDAS.  So for the doctor to bring it up as a far out possibility was encouraging, in that she was up to date on what this tic could be.  So, she did a throat culture, as well as bloodwork to look at ASO titers and Anti-DNase B antibodies.  A couple of days later, the bloodwork comes back, and he's off the charts high on both of these values, although his culture came back negative.  So, as a theory, she gave him a 10 day treatment course of amoxicillin.  Within two days of starting the antibiotic, my son's tics completely stopped.  Finished the medication, and all tics were gone, and stayed gone.  For a year...

Next fall rolls around, and it happens again, only this time, instead of a facial grimace, it's eye rolling tics.  Massive, major, looks horrifying, eye rolling tics.  I take him back to the doctor, and surprisingly, this time, she just says it's tics and to wait it out.  I let her talk me into this at the appt., but then got home and couldn't stop thinking, what if this is the same thing as last time???  So, I called up there and requested bloodwork to be done again on him.  Long story short, they did the bloodwork, although it took forever because the lab didn't do one of the tests, and then when they did do it, apparently the office just filed it away, and never called me.  Grr....anyway, values again come back super high.  But this time she doesn't want to give me antibiotics, and I have to basically beg for a prescription.  And this time, once again, the tics go away within a couple of days on the meds.  But unlike the first time, the tics slowly start back once he finishes his prescription, and they increase, plateau, and finally start to fall off over the course of 4 to 6 weeks post medication.  That brought us all the way through to January.  Pediatrician sends him for an EEG, which comes back totally normal.  So then she suggests a visit to Infectious Disease at the children's hospital, because she is out of her depth.  So while waiting for that referral to go through, ID tells her that we need to see the neurologist there that deals with possible PANDAS.  Great! I think, until I have to wait over 4 months to get an appointment with him.  During those four months, I did get the pediatrician to agree to give him prophylactic amoxicillin to get him through to his appointment.  My son does get some recurrent eye rolling tics over the course of those few months, but not terribly severe.  By the time the appointment rolls around, he's currently baseline with no tics.

Have a long appt. with neurologist, and after 90 minutes, his conclusion is that my son doesn't have PANDAS, he has Tourette's.  His feeling was that the elevated ASO and Anti-DNase B antibody levels were just "red herrings" (his term), and that we are on the totally wrong track.  His first suggestion is to ditch the antibiotics, because those are harming him, and to basically just let his tics wax and wane as they will.  And we could try cognitive behavioral therapy if we would like to try to find someone.  I left that appointment really unhappy, and not buying into the Tourette's in any way.  My son just did not exhibit those type of symptoms, in my opinion, and only got tics when around people that were sick.

So, second opinion with a different neurologist, a few months later.  Son is still tic-free at this point.  90 minute appointment with second neurologist, and he come to the conclusion that while he cannot rule in or out the case for PANDAS, he would classify him as chronic tic disorder at the time.  He did give me an emergency prophylactic dose of azithromycin 500mg once a week, should I feel the tics come back and are debilitating for him.  I had never read of doing prophylactic dosing once a week, and still haven't. 

So, fast forward to December of 2016 (this has been going on for two years now).  Clearest case yet, in my opinion... son starts having minor eye rolling tics, which increase over a couple of days.  Then he comes home from school with a fever, and I take a peek in his throat, and we're off to the doctor.  Strep test positive, amoxicillin antibiotic given.  Two days on antibiotic, tics totally gone.  Finish rx, tics slowly start to come back, increase, plateau, and taper off over the course of about 2 to 3 weeks.  From January to June of this year, we have had so many ups and downs with the tics coming and going based on illness in our house, his friends, etc.  

Right now, out of the blue, my son started eye rolling tics again over the past weekend, and they are really really bad right now.  Probably one of the worse times I've seen for him.  I tried to talk to his pediatrician to see if we could put him on prophylactic antibiotic for a year, and see how that helps (or doesn't help) him, but suddenly she is not willing to write the prescription for "off label" purposes.  So, I either need to go back to the neurologist (the second one, not the Tourette's guy), which is so hard to get an appt with, or try to get in to see Dr. Rossignol, who is nearby, but I'm sure will also take quite some time to get in to see.  All the while, we are about to head out for a 3 week vacation.

I have been giving my son the following items, in the hopes something will help:  NAC dissolvable tablets, copaiba oil mixed with manuka honey, Enhansa capsules (2), magnesium supplements, and essential oregano oil on his feet at night.  

I'm exhausted by worrying about him so much, which I know all you parents are as well.  I know our case would be considered "mild" by anyone's standards, and I get that, but to us, it feels huge.  Watching my son not be able to keep his eyes still would break anyone's heart.  I would love to hear anyone's words of advice!  Thanks, and sorry for being so long-winded! 

[bws1565]

Just my input here.

Try Blis K12 from the co NOW.  I know someone who has had great success with strep related tics with this vitamin.  It is an oral probiotic meant to help for strep.  Just keep in mind, it is extremely important also to have regular bowel movements.  Miralax daily would be a good idea.

[Cleopatra]

My dd was on a weekly 500mg azith prophy protocol for awhile.

When my dd had HORRIBLE tics (vocal, sniffing, throwing head back, blinking, etc.) 10,000x/day we swabbed her nose and found MRSA. Treated it with Bactrim and it vanished within 36 hours. Has come back with flares, but is finally under control (99.99% gone) after 5 years of ALL the available treatments.

[bobh]

tlreed - how has  your son been the last 2 weeks, and have you found any interim solution?

[tlreed]

My apologies for not updating!  As I mentioned in my original post, we went on a 3 week vacation, and just recently returned back home.

As far as the tics go, inexplicably, as these things tend to be, the tics subsided about one day before we left for vacation.  Still a few here or there, but NOTHING like it was in the week leading up to it.  Of course, my husband came down with a cold two days before we left, and then I got it the day after we left, but both my kids managed to escape unscathed.  

Over the course of our trip, we did have some flares of his other motor tics, but nothing extreme.  Eye rolling remained minimal, but mouth pulling and one eye rapid blinking did come and go.  Right before we left to come home, my son had all three somewhat (eye rolling, one eye rapid blinking, and mouth pull), but on our second day home now, has seemed to relax.

Called into our neurologist's office yesterday, and because it has literally been one year and one week since our last appt., I have to wait for a new one hour appt to open up, which will not be until Oct 30th.  All to ask about getting the Rx for the prophylactic antibiotic.  

On another note, I read the new research paper that came out, and will be adding vitamin D3 to my son's vitamin regimen, in hopes that it helps keep his immune response a bit more chill, in response to the inflammatory effects.  

So, as everyone else has to do, we are playing the waiting game, as well as the guessing game.  This illness is the most frustrating thing I have ever dealt with in my life, and heart breaking that it is my child. I know all of you also feel the same!

[jan251]

I suggest seeking out a PANS/PANDAS specialist rather than trying to convince other docs.

On the vitamin D, take a trial-and-error approach.  It can make things worse (it does for my child).

[tlreed]

Thanks jan251.  I plan to try adding the B3 and see if that affects his tics in any visible way.  

I do have the option to see a PANDAS specialist, but it would take months to get a new patient appointment.  Luckily, the second neurologist we saw was more familiar with PANDAS, so I'm not trying to convince him this exists.  He did say at our initial appt. that we could discuss doing the 500 mg azithromycin once per week as prophylactic, if the tics were becoming really bothersome to my son.  I would like to try this, to see if it helps him keep the tics more at bay throughout the school year.  The neurologist did give me a prescription at our first appointment last year, but I didn't use them since he went almost 6 months after that appt. with no tics.  I did fill the Rx right before it expired, just to have those on hand, so I will most likely start the 1x per week right before school starts back up again, and have enough to get him to the appt. 

Thanks for the advice!

[tlreed]

Just wanted to post an update for my son, as well as ask a question.  

Lucked into a cancellation slot for my son's neurologist, so we were able to see him this past Friday, rather than waiting another two months, so yay for that!  Went through all the tic flares that my son has gone through since we saw him last July.  Dr. is great, and a good listener, and doesn't discount the things that I see, which is great, as the pediatricians almost don't believe me!

Dr. gave him an "official" diagnosis of chronic tic disorder, and we are going to follow the PANDAS protocol with 500 mg. azithromycin weekly, along with the magnesium supplements, and D3 supplements that I have already been doing.  We will see how this helps or not, and have a follow up appointment scheduled for 6 months, unless things get bad and we need to be seen again sooner.

Question is this:  the dr. said that if the azithromycin doesn't completely do the trick, and my son has functional problems / social difficulties / or discomfort with any tics that reappear, that we can discuss adding guanfacine or clonidine to his regimen, as it has been proven to help with decreasing the tics.  I'm wondering if any other PANDAS patients here have experience with either of these drugs for tics, and what your experience was.  I know that they can be used to treat ADHD, but my son doesn't have ADHD, so this was solely be for helping the tics.

Thanks!

[bobh]

If you put guanfacine (near top right) into the search box while you are in this forum, you will see a lot of discussion about it - lots of kids have been on it.  You can also search intuniv - a brand name for the same.  I know of one child that had a bad reaction about 2 weeks after starting it - but that is just one case, and every child is different.

I was very surprised to find that clonidine didn't have any search hits, but you can try some of its trade names (Catapres, Kapvay, Nexiclon).  I have only known of that one used on two kids that I know - one child just got sleepy, another got worse.  But again, that is a very limited experience and your child may improve on it.