no treatment for now

[librarianmom]

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).

 

[Missmom]

You should be thankful that your son is doing so much better, but also be cautious. Just curious, after the initial onset and flu mist, was your son ever tested for infection and or treated with any antibiotics during that time. Did the neurologist order any of the bloodwork to test for active or past infections?

 

I was kind of in the same boat as you at one time. I knew my son had displayed symptoms of pandas in the past but once I realized it he was doing much better. I asked our doctor to please write me a script of augmentin just to keep on hand. That way if the symptoms spike up then I could start treatment immediately and call and set up an appointment with the doctor. That helps just to have peace of mind. I also avoided things that I knew could trigger a flair. Things such as dental visits (I know they are important, but I figured as long as his brushing habits were good he could skip a cleaning or two.). Also I am very careful about exposing him to people who I know are sick. Just being extra careful. I give plenty of vitamin c and do the simple things like lemon water for detox.

 

I am glad you found this forum, there is so much info on here to help you.

[librarianmom]

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.

[Missmom]

I would be willing to bet that when he had sore throat and fever but tested negative that he actually had strep but that the nurse maybe did not get a good enough swab. This happens quite a lot and leads to false negatives. I think because so many children are squirmy and absolutely hate the throat swab. My son would rather bloodwork any day over the swab. The five days of antibiotics likely was not enough. Also, many docs prescribe amoxicillin and that simply does to work on many children and they return later needing a stronger antibiotic.

 

I would also question the touretts diagnosis. I mean it is what it is as far as just a label, but I feel that whatever they call the tics does not really matter. What matters is why do totally normal kids all of a sudden develop tics and OCD. I can't believe so many doctors just give you a name and then move on. I mean, something had to trigger this. In my mind it is just common sense to try to find and treat the cause. My son also has tics that started overnight. He went from totally normal to waking up and not being able to stop nodding his head. It was so scary. Some days he still has them but for the most part only I would notice on a good day. I have read many posts on here which say that the tics are usually the last thing to go.

 

Anyway, it is great that you are educating yourself just in case he flairs up again. Look for a good doctor who you would be able to call on should things flair up again. Someone with an open mind who will listen to you and be willing to run tests and treat. Try to avoid flu mist from now on. I don't give any flu shots but if you choose to do flu shots the vaccine seems better than the flu mist for pandas kids.

[rowingmom]

I would say you are doing the right thing by not treating when symptoms are not an issue.

 

Concentrate on gut health (probiotics, fermented vegetables) which will support his immune system and by generally supporting health in general by choosing unprocessed, mostly organic foods (the Dirty Dozen anyway), outdoor activity in the sunshine, etc.

[librarianmom]

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).

[rowingmom]

A couple of previous posts on effects of live attenuated vaccines/flu mist:

 

http://latitudes.org/forums/index.php?showtopic=21723&hl=%2Blive+%2Bvaccines#entry172154

 

http://latitudes.org/forums/index.php?showtopic=22398

[pr40]

here is why wait and see might not be the best strategy: when there is an exacerbation, it means that the body has began to react not to an infection but to its own reaction to that infection. the auto-reaction has already started and it takes time for it to die down.

for this reason, abx is taken prolifically, to prevent an auto-immune reaction.

 

one could even suggest -- not speaking as a scientist, of course -- that your kid may not be displaying symptoms even when there is some underlying auto-anti-body process going on. or that you are not catching up on those symptoms.

 

I don't want to alarm you just to give you a different way to think about what you are seeing.

[librarianmom]

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.

[rowingmom]

Mother's intuition or "gut feeling" is a wonderful thing. It has never lead me astray.

 

You know your child and his responses better than anyone. You subconsciously know more than you think you do. Not very scientific, but it seems to work for me .

[pr40]

"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."

you may want to start a separate thread just with this question. it would be interesting to know if there is anyone like that on this forum.

 

most of the cases here are, as you say, saw-tooth. for that reason, prophylactic abx is a part of the treatment. now, just what you say here makes me think that you don't really have two options. One is the usual treatment, the other is hope that you child is an exception, which is really not something I would rely on.

 

did you do any blood tests? are they showing improvement?

Edited May 29, 2014 by pr40

[Missmom]

Just FYI, my son has tics although minor at this point. I have him on prophylactic antibiotics. I have avoided steroids at this point because some others have reported steroids can lead to an increase in tics in some kids. You could probably search and find the older posts. I would consider steroids only if things got much worse or if the antibiotics stop working especially if tics are your sons only symptom at this point.

[Mommy2MCL]

Have you looked into other modes of treatment? Homeopathy or Essential Oils? Diet also would be good. I would think the vitamins and probiotics are good but would want to add in something that is anti-inflammatory for treatment.

 

I think I would also want frequent bloodwork to watch the infections closely.

 

Good luck! Like 'rowingmom' said, trust your gut!

[qannie47]

1 year ago: sudden tic and ocd

5 months ago: Pans symptoms

Current: residual tics/mild ocd

 

You have a pattern that is very typical of Pans/Pandas. I bet if you search your mind going backwards, you will find yourself remembering weird/idiosyncratic behaviors that occurred while your child was growing up that "suddenly appeared", and as soon as you started to become concerned, "they disappeared". An example for my son in hindsight was his "3 month spell of tiptoe walking" at age 3. Doctors puzzled, ran tests, it went away, and the dx became "idiosyncratic tiptoe walking" (this means doctors have no answer). It went away, and we never thought twice. Looking back, there were several times in his life where "odd" things came and went that had a neurological feel.

 

It was explained to me by Dr. K that Pans/Pandas can start as early as 18mo of age. Like the perfect storm brewing, all you have for years as far as symptoms are these little odd "moments". Your son had his FIRST "big" exacerbation I would say 5 months ago. One year ago probably qualifies with the sudden tics, but what really got your attention were the accompanying Pans symptoms 5 months later.

 

My point: I would never ignore and "wait & see". I have too much respect for this disorder to know first hand what it is capable of doing to a child's and families world...It is brewing....I don't mean to sound so dramatic. But it is. Is it possible that this is as bad as it gets for your child? Sure. I just would not take any chances.

 

There is much that you can do from a "proactive" stance. First, I would see a Pandas/Pans specialist. Prophylactic abx is important. Addressing the Gut is important because much of the immune system resides there. Supplements like Omega's, Vit d, Turmeric instead of Motrin are just a few of the many very important things you can do.

 

My child's first "big" "on the Pandas radar" was at age 6. He responded so well to 6 weeks of abx and went back to 100% (actually even better because his strange RLS which was with him for years went away for the first time and never returned). We decided to wait. Well, 3 months later, another flare. Then another. By the time we decided to do IVIG he was a mess. There are many different opinions regarding IVIG on this forum, and they are all to be respected. While we all have much in common when you read our stories, when you dissect, we are also unique in our own way. So for my child, IVIG was a Godsend. I wish I would have done it sooner then later. Our doctor felt that as long as abx was working there was no rush for IVIG. In one very big sense he was right. There is a course/protocol that must be followed. I get that, I respect that. It is good medicine. That being said, my recommendation would be that you consider IVIG. Along with some of the other golden nugget supports that you can find on this forum.

 

Best of luck.

[librarianmom]

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.