Treatment options for previous sudden-onset symptoms highly suspected to be PANS

[Butterfly12]

Hi, I'm a 17-year-old from Australia and suspect that all my conditions that I've developed since I was 14 may all be caused by PANS. I have had three sudden-onsets of symptoms, in June 2018, May 2020 and January 2021, all with various psychological and neurological symptoms which have resulted in numerous diagnoses but which have all been treatment-resistant, with medications giving terrible side effects. 

My first sudden-onset in 2018 is mostly in remission currently, whilst I still deal with all the symptoms from May 2020's and January 2021's. 

In June 2018, I experienced sudden severe social anxiety, severe generalised anxiety with 3-4 panic attacks daily, psychosis (vivid hallucinations - tactile, visual and  auditory predominantly), OCD and sleep disturbances. I was diagnosed with social anxiety and generalised anxiety with a partial psychotic disorder (I was never officially diagnosed with OCD as the psychosis/hallucinations were worse and impacted my life more, also my compulsions are more subtle as many of them are mental or I can blame them on my tics or mask them making them look like another movement or behaviour). This onset is mostly in remission now, however, I still have OCD and mild social and generalised anxiety (my sleep disturbances were in remission, however, they came back in January 2021). 

In May 2020 I developed severe sudden onset motor and vocal tics and in January 2021, I developed frequent non-epileptic seizures (about 100 a day), sleep issues, episodic paralysis and mobility difficulties. 

Basically, from this, I was wondering if I have to have another sudden-onset of symptoms in order to receive treatment (and be tested diagnosed, although I know that some doctors will diagnose off of medical history), or if I can receive treatment now? And if I can get treated now, what options do I have? 

Any help/advice/ideas would be greatly appreciated

[Cmac]

Wow—that sounds intense. So glad that the first exacerbation is settling down. Have you determined a trigger/triggers? Strep? Myco P? Lyme? Mold? There are tests for all of these things. Does Motrin ever help temporarily with symptoms or take the edge off? Antibiotics and steroid tapers both helped my son through flares.

Wishing you all the luck in the world with this!

[Butterfly12]

Hi, thank you so much for the reply, I will try motrin as I haven't yet, is it the same as ibuprofen or advil? 

We don't know the exact trigger for the first flare but I know that I was sick with something like flu or cold in 2018. In 2020, I received a flu shot and my flare arose from that (I woke up with tics just over a week after receiving it). In January 2021, I had a stomach bug (don't know what kind, we didn't think to get it checked out) which triggered the NES and paralysis and other symptoms. 

I just wasn't sure if I could still get tested or treated for these specific triggers or anything because so much time has passed. 

[Cmac]

Yes Motrin is the same as ibuprofen or Advil—it helps with inflammation. Do you have a good PANDAS doctor where you live?

[Butterfly12]

Cool, thanks.

Unfortunately there is no PANDAS doctor where I live and there is only 1 (maybe 2) in all of Australia but they are both interstate and all the state borders are closed currently and for the foreseeable future. 

[PandaEverdeen]

On 8/2/2021 at 1:27 AM, Butterfly12 said:

Hi, I'm a 17-year-old from Australia and suspect that all my conditions that I've developed since I was 14 may all be caused by PANS. I have had three sudden-onsets of symptoms, in June 2018, May 2020 and January 2021, all with various psychological and neurological symptoms which have resulted in numerous diagnoses but which have all been treatment-resistant, with medications giving terrible side effects. 

My first sudden-onset in 2018 is mostly in remission currently, whilst I still deal with all the symptoms from May 2020's and January 2021's. 

In June 2018, I experienced sudden severe social anxiety, severe generalised anxiety with 3-4 panic attacks daily, psychosis (vivid hallucinations - tactile, visual and  auditory predominantly), OCD and sleep disturbances. I was diagnosed with social anxiety and generalised anxiety with a partial psychotic disorder (I was never officially diagnosed with OCD as the psychosis/hallucinations were worse and impacted my life more, also my compulsions are more subtle as many of them are mental or I can blame them on my tics or mask them making them look like another movement or behaviour). This onset is mostly in remission now, however, I still have OCD and mild social and generalised anxiety (my sleep disturbances were in remission, however, they came back in January 2021). 

In May 2020 I developed severe sudden onset motor and vocal tics and in January 2021, I developed frequent non-epileptic seizures (about 100 a day), sleep issues, episodic paralysis and mobility difficulties. 

Basically, from this, I was wondering if I have to have another sudden-onset of symptoms in order to receive treatment (and be tested diagnosed, although I know that some doctors will diagnose off of medical history), or if I can receive treatment now? And if I can get treated now, what options do I have? 

Any help/advice/ideas would be greatly appreciated

Butterfly-that sounds like classic PANS to me. I think you're exactly right. No, you do not need another sudden onset of symptoms to be diagnosed or treated. (Some PANS patients don't even have sudden onset.) Many doctors will diagnose based on medical history alone, as you said, or if you are interested in being tested, the Cunningham Panel by Moleculera Labs is considered standard for PANS. They do run tests for those living outside of the US, but the test is costly, usually around $900 (and that was for patients in the States, I have no idea what it would be in Australia). Here's their site, if you want to take a look at it. https://www.moleculeralabs.com/ There's a neat video on their site that shows exactly what's going on with your immune system and brain in PANS, too, if you are interested in that.

To get treated-I saw above you said there is no PANS doctor where you live. Not all doctors that treat PANS list it on their site-one of the doctors that has treated me specializes in autoimmune diseases, but still had experience with PANS. You might call around to integrative medicine doctors or naturopaths in your area-there seems to be a higher amount of doctors willing to treat PANS in the integrative and holistic community. If that fails to yield results, there are some PANS doctors that will allow you to do Zoom or Skype visits. Usually they want the first visit to be in-person, but if you called and told them about your situation with the state borders, they may make an exception. 

As for your actual treatment options, here's a really good overview from both the PANDAS Physicians Network and PANDAS Network that outlines what most doctors will go by. Some doctors don't follow these guidelines exactly, but these are the general options most of them suggest to their patients. (There are a lot of alternative treatments out there, too, in the holistic or integrative communities. Google search turns up a lot of these options if you're interested in looking into them.)

https://www.pandasppn.org/treatment/

https://pandasnetwork.org/understanding-pandas/treatment/

Also, I saw your question about getting tested for the trigger posted above. It's extremely likely that if you're still having symptoms, whatever bacteria or infection caused them is still present in your body, even if you have no symptoms that would traditionally be associated with that infection. (E.g.  as far as I'm aware, very few PANS/PANDAS patients get fevers, and some of them do not present with a sore throat or rash with strep and scarlet fever. They just have a flare in their PANS/PANDAS symptoms). Here's a page from PANDAS Network that explains some common infections associated with PANS, and the tests that might be run: https://pandasnetwork.org/understanding-pandas/diagnosis/ Some PANS/PANDAS patients request strep titers tested, even if they have no traditional strep symptoms. Not everyone with PANS has high strep titers though, so it isn't a foolproof test. It can be a starting point, though, especially if the patient improves after antibiotics are given for high strep titers. As Cmac said, it's very worth looking for environmental triggers as well-mold, for instance. However, the way you describe your 3 symptom flares makes me think that your main PANS triggers right now are probably infectious/bacterial.

[Butterfly12]

Thank you so much. I have recently gotten the Cunningham Panel which was ordered by my new Neurologist and are awaiting the results. He said that if it comes back with anything, he will treat it, but if it comes back clear, which he believes it will, then he won't treat it as he doesn't seem to think that there are any scientifically proven treatments where the benefits outweigh the risks (I have had serious side effects for treatments for Tourette's and my NES previously). He said that there has been no conclusive evidence that there are treatments which are effective, and so unless the testing comes back with anything, he's not willing to treat it. 

Based on my history, he is fairly sure that PANS is what I have, however, he is hesitant to treat it as he does not want to 'mess' with my immune system in the middle of the pandemic, which is understandable as I have expressed that I am not going to get the covid vaccine after what happened with the flu vaccine and the knowledge that typically, each flare is worse than the last (this has been the case for me). 

Thanks to the suggestion from Cmac to try motrin/ibuprofen, we have found that when my symptoms get really severe, particularly my NES, that ibuprofen is beneficial in reducing the symptoms to their normal levels, however, it hasn't reduced the symptoms below their normal level thus far. 

[PandaEverdeen]

On 10/8/2021 at 12:06 AM, Butterfly12 said:

Thank you so much. I have recently gotten the Cunningham Panel which was ordered by my new Neurologist and are awaiting the results. He said that if it comes back with anything, he will treat it, but if it comes back clear, which he believes it will, then he won't treat it as he doesn't seem to think that there are any scientifically proven treatments where the benefits outweigh the risks (I have had serious side effects for treatments for Tourette's and my NES previously). He said that there has been no conclusive evidence that there are treatments which are effective, and so unless the testing comes back with anything, he's not willing to treat it. 

Based on my history, he is fairly sure that PANS is what I have, however, he is hesitant to treat it as he does not want to 'mess' with my immune system in the middle of the pandemic, which is understandable as I have expressed that I am not going to get the covid vaccine after what happened with the flu vaccine and the knowledge that typically, each flare is worse than the last (this has been the case for me). 

Thanks to the suggestion from Cmac to try motrin/ibuprofen, we have found that when my symptoms get really severe, particularly my NES, that ibuprofen is beneficial in reducing the symptoms to their normal levels, however, it hasn't reduced the symptoms below their normal level thus far. 

Good to hear you've found a doctor who is willing to run tests. It is entirely normal as far as I know for ibuprofen to not reduce symptoms entirely, except in very mild PANS/PANDAS cases. I recall reading about a doctor who diagnosed based on reduction of symptoms after a course of NSAIDs, so it seems to me there's a high likelihood the test will come back with some type of a result.