New to PANDAS and have a million questions

[OhioDad]

Hello to everyone on here struggling with PANDAS. This is something that I had no idea even existed. A couple weeks ago my fun loving, enthusiastic, spunky 6 year old daughter woke up as usual to go school. As we were standing in the kitchen talking I noticed that her eyes were blinking rapidly every so often then rolling upwards. It was something that must have continued through the day because when she came home it was still happening. The next day it was a bit more frequent. We decided to take her to the pediatrician. The DR gave her a physical exam...checked her eyes, ears, and noticed her throat was irritated. As she said strep can make crazy things happen. They preformed a rapid stress test that came back negative. Over the next few days her personality remained the same as her tic became more and more frequent. Then we received a call from the Dr saying that they received word from the lab that she indeed has strep. Immediately we started her on amoxicillin. Over the next week she improved a bit each day. By day 9 she just had a slight blinking tic. Throughout these 9 days my wife and I googled strep and tics and were horrified to learn of the world of PANDAS. We made another appointment with our Dr to extend her cycle another 10 days. From there we aren't sure what to do. She Dr is reluctant to say that she has PANDAS because so little is know if it, but us willing to try to treat it at our request. We have made an appointment with a PANDAS specialist, but that isn't for another month. During this time period we are going to continue on the amoxicillin and see if the tics completely disappear. From there the pediatrician would like to stop treatment and see if anything returns. If it does, another round of antibiotics followed by years of low dose penicillin to keep strep at bay. From reading and researching we are gathering that if my daughter does have PANDAS hers is a more mild case compared to others, but no less scary as a parent. I see a lot of parents that have children treated with steroids as well. What is the reasoning for it? How does it help? I really don't know how I feel about having her on penicillin for the next few years, but I also fear the unknown of having a specialist work with us. Are there any parents out there that had a child experiencing only tics with their positive strep? What did you do and what are success stories? Thank you!!!

[NYCMom]

Hello and welcome. Our son (15yo) is/was also a mild case. He had some eye blinking as a toddler but nothing consistent or alarming. Classic PANDAS appeared at around 6yo after a strep infection. We had tons of symptoms (tics, hyperactivity, encopresis, night terrors, insomnia, emotional lability, etc.) but overall still a bright, functional kid and no school disruption. He was positively diagnosed using the Cunningham panel, which also showed him on the mild end of the population. Other than some minor diet changes, we only treated with prophylactic antibiotics and occasional ibuprofen.  Tics are one of his more lasting symptoms (infrequent now, but he still does flare a little). He did have some stomach issues that could have been from the antibiotic use, so we would sometimes take breaks and address his gut health. He is a happy high school student now, straight A's, no current PANDAS treatments other than probiotics. His tics don't seem to bother him at all when he flares now and they are much milder as well.

Steroids are the ‘big stick’ used to get brain inflammation down when ibuprofen is not effective.

 

[bws1565]

I would highly recommend vitamin Blis K12 from the company NOW to treat tic Pandas.  It is an oral probiotic. good tasting, and really helps.  Kids need to take it about 4 times daily.

[bobh]

Welcome to the group.  I would say you are very fortunate in how your circumstances lead you to rather rapid proper treatment.  There are some who have struggled for very long, even years, and then discovered PANDAS.

Your doctor may want to try to find out for herself if PANDAS is real - commendable (much better than taking another unbelieving "older experienced" doctor's word for it, which most seem to do, and which so keeps the truth from spreading).  But, taking your daughter off the abx (at an early stage) to see if the symptoms come back is an experiment on your child that is not necessarily in her best interest in the very near term.  If you need that kind of verification, then go for it - the experiment would be much more important in that case.  I would think that a pandas specialist would be better because they won't need to do that experiment.  But, if you want to further the cause and bring another skeptical doctor into the PANDAS fold for the greater good, well that could be another good reason (though for me, that idea is not free of ethical concerns).

I think you got a good answer on the steroids.  If your daughter gets to a state where symptoms spike even though on abx, try ibuprofen first (can't be on that long term, though).

Seek out and watch the documentary "My Kid is not Crazy" (it is about PANDAS), for which you will need to fasten your emotional seat belt.  There is still plenty of nasty controversy.

[bobh]

On ‎10‎/‎23‎/‎2017 at 7:10 PM, bws1565 said:

I would highly recommend vitamin Blis K12 from the company NOW to treat tic Pandas.  It is an oral probiotic. good tasting, and really helps.  Kids need to take it about 4 times daily.

I understand this to work by crowding out the strep bacteria with something that is better for oral hygiene.  I have tried the gum form as well, which I think it is a reasonable measure to consider for throat-discovered strep especially if it hangs on despite the abx.  Mouthwash to kill everything you can, and then water rinse to get rid of residual mouthwash, and then the gum to replace the bad guys with better guys.

Note that strep can exist in all kinds of other places (including inside the tonsils), for which the gum form of K12 blis would be useless.