librarianmom

So I have an update of my "wait and see" to run by those of you with experience. I'm still trying to figure out if my son's symptoms fit a PANS pattern or a classic TS pattern... He is pretty much exactly the same as he was 9 months ago. He has tics. Motor and vocal. They are mild as far as disruption/interference with his life, but constant. He has had a few illnesses (including the confirmed strep in the spring) with only mild increases in the tics at the time of illness or none. Some days he has more tics than others, but none worth medicating. No return of fears, OCD-type behaviors, or sleep problems with our without illness triggers. Some triggers we have found are: sugar, caffeine, too much TV or video games, chlorine, and excitement. I now give him krill oil, a good multi vitamin, and a probiotic every day. He uses Xclear nasal spray (with xylitol) to help with nasal allergies as well as a steroid nasal spray. He sees an OT to address his sensory issues (which came with the onset of the tics). The OT sessions seem to help with sensory issues, as well as balance and concentration (which we didn't know he had issues with until the eval). The neurologist felt he fit the PANS profile because we have no family history and the onset was sudden at a later age (9). We've had only the one "exacerbation" with the onset of tics, ocd stuff, sensory issues, and sleep problems happening all at once. Since then, he's just left with mild tics. Has anyone who has a child with PANDAS/PANS experienced this type of course? With such long spacing? It's possible he could have another exacerbation with an illness, of course. I was just expecting it sooner. And since he has had some illnesses without worsening....

Thank you for all the experienced opinions on how to proceed after this first experience. Looking back, there were no weird behaviors or idiosyncratic/neurological symptoms that I ever noticed except sleep walking/talking and a febrile seizure at 18 mos. (which the doc insists is not related). He had no blood work related to this recent diagnosis because I took him in 1 year following the first symptoms when things were already pretty much resolved except for a few tics. I took him in fully expecting a classic Tourette's diagnosis. (Later, upon review of his records, it looks different. Perhaps the non-strep infection in April 2013 was actually strep?) Because of the rapid onset, his age (10), no family history of OCD or tics, and his specific symptoms, the neurologist said he squarely fits the PANS category instead of classic Tourette's. He had sore throat and a fever and positive rapid strep 2 weeks before I saw the neurologist, so if he'd had the blood work, it would have shown that (so would not be significant. Titres would be up... he was just treated for strep).He had an MRI with contrast only, which of course, showed no encephalitis. My suspicion is that he may have had untreated strep without classic symptoms (PANS symptoms instead) from April 2013-April 2014 when the rapid strep was positive. He happened to have a cold at the same time with this latest strep, so that may have been the reason for the sore throat and low fever that caused us to swab for strep by luck only.--so maybe it wasn't a new strep infection at all. He did not get worse during this latest strep infection. He did, however, get better (major reduction in tics) after the 10 days of antibiotics (amoxicillin), but this lasted for 5 days. After 5 days post antibiotics, his mild tics returned but still nothing major. Even during the worst of all of this when we had OCD symptoms and all the sleep problems and fears, he never missed a day of school and teachers mentioned nothing (he continued to function). I really appreciate hearing from all of you who have "been here and done that" (and are still doing it). I want to be cautious, proactive, and practical. Being a newbie to all of this, it will take me some time to figure out what that means. I am a librarian with a biology degree, so hopefully I can process the research and ask the right questions. It is clear that I have much to learn (and many experts to seek out--including you) at this point.

Thanks for that too. That is my main area of concern (the auto-anti-body process underlying that I can't see) with the "wait and see" approach. I don't like waiting for the next exacerbation, but I'm also afraid of starting antibiotics when I won't be able to tell if they're working/preventing anything and possibly leading to fungal or other opportunistic things to take hold as a side effect in the meantime. I feel like I'm waiting either way. Of course there is a chance I'm doing him harm no matter what I choose to do... The neurologist offered the 5 day steroid burst as an option too, but it seems like more of a temporary "fix", and probably not appropriate during a near symptom-free phase. If I do anything, it will be a long course of antibiotics at this point. I'd like to keep the steroid burst and other things in my pocket in case of future downturns. Is it possible to have just one big exacerbation and not multiple ones? So many of the cases I'm reading about are more of a roller coaster. Ours (so far) has been more like one giant, slow, hill only (up and down) during a 1 year period.

Thank you both for the advice. I have been especially wondering about the flu mist, so thanks for that. We will avoid it. I've been doing fish oil and probiotics for a while now, and I do think they help (as well as the occasional Ibubrofen). I will continue to work on the clean eating advice. We eat mostly organic at home, but eat out a bunch (which we should reduce anyway for plenty of other reasons).

About 5 months before pans symptoms, he had an unexplained 10 day fever with no other symptoms. Strep negative and bloodwork was consistent with viral infection. About 2 weeks before symptoms, he had sore throat and fever and a bunch of kids at school had step. He was negative on the rapid strep but my doc started antibiotics and sent the culture. He cultured negative so we were told to stop the antibiotics after 5 days. Tics, anxiety, sleep problems started 2 weeks later. During the whole year he was not sick (that we knew of) but at the 1 year mark he had sore throat and fever again and was positive on the rapid strep for the first time in his life. He had 10 days of antibiotics and seemed improved after the full 10 days were over. Then 5 days later we just have the tics back but nothing else.

My 10 year old son was recently diagnosed with Tourette's as a result of PANS. About a year ago (when he was 9), his symptoms came out of nowhere. A tic was first (throat clearing) followed quickly by out-of-character anxieties (fear of large rooms, spiders...), major problems getting to sleep, frequent urination, sensory issues with clothing, and OCD type behaviors like having to touch items with both hands or make things feel "just right". Although the symptoms felt major to us, he continued to be able to go to school with no mention of issues from teachers. His handwriting has always been bad, but was particularly bad during this time period. After about 4 months and lots of patience and working through his anxieties (Books: What To Do When You Dread Your Bed, What To Do When Your Brain Gets Stuck, etc), his sleep and anxiety problems went away. Looking back, he should have been treated during this time (but who suspects an infection when your kid has these behaviors? I do now...) Side note: He received the flu mist during the exacerbation and I can say he was quite a bit worse after. After the anxiety, sleep, urinary frequency, and OCD symptoms went away, we were left with the "touching things with both hands" and a multitude of mild vocal and motor tics. Because the tics were present for more than a year, I approached my pediatrician and she sent me to a neurologist who diagnosed the Tourette's and called it PANS type as opposed to inherited. Because his symptoms are now mild and manageable (tics are all that is left) and he has no sign of an active infection, we are adopting a "wait and see" approach. At the first sign of symptoms worsening, I will look for infection and treat with antibiotics. The Neurologist will also do a 5 day steroid burst if needed and consider IVIG too. Do those of you with more experience recommend being more aggressive during this time? When things are going well, it makes some sense to me to hold off on treatments that may/may not improve/worsen his condition. I have used ibuprofen with success all along without knowing it. It was the only thing we found that helped him sleep during the worst of the sleep problems. I use it now if I suspect he's getting a cold/has allergies, etc. I'm just wondering if I should consider his tics as a sign that he needs to be treated if I'm the only one who notices them at this point. So many have described symptoms that are much more debilitating than my son's at this point, I don't know if I should be scared to death about what is coming or if I can be relieved that my son's case is mild (and that I stumbled into the right neurologist's office).