10 Facts About PANDAS (The Autoimmune Disorder)

[@Lothaenorixius]

I would say, "YAY! She's not ticking a lot today! She must be having a good day." 'Cause let's face it; anyone who has done any research into tourrette's knows that it can be exhausting.

[@boatingbrookcosplay7447]

I have TS it is sorta tiring but you a bit of Stamina for them

[@jammies1431]

@@boatingbrookcosplay7447 same. Heavily dependent on the amount of repetition and what type of tic for me. If it's nonstop, definitely exhausting. On good days, more of an annoyance. The worst is pulling my muscles. :(

[@hopebeck9396]

I have TS too and palilia, echolilia, coprolilia, and severe motor tics and after i have a tic attack or just a bad day in general I am SOOOO tired and sleep basically the enitre next day :\

[@jennahalcomb7359]

Yes they can be so so tiring depending on the specific tics. When I get very repetitive ones especially. And some can be quite painful as well. Today was a good day though so 🥳

[@alana_bear2880]

This is a beautiful comment.

[@Gabriela-sr7jb]

Nobody knows more about their own symptoms, disorders, etc.. than the ones experiencing them in the flesh. Thank you so much for sharing in such aneducational fashion. Your hair ROCKS btw :)

[@thistrippyhippie]

THANK YOU 🥰

[@katiemelling3221]

@@thistrippyhippie hi evie how is your tics and seizures today and how are you and your video is amazing i love you 🥰💜💪🏼

[@veganchocolatemousse]

so a hypochondriac knows best about their disorders and symptoms?

[@multimag5696]

@@veganchocolatemousse that's not what they meant

[@Gabriela-sr7jb]

@@multimag5696 oh them ill-willed comments...

[@pia8117]

Im a speech therapist and I never heard of PANDAS before, so thank you so much for educating us. 1 of 200 isn't rare and I have a feeling hearing your story will impact my life as a therapist in a way.

[@XxgabriellabxX]

It’s a contested disorder with shaky to little evidence so a lot of medical professionals don’t believe in the existence of it. So it’s not surprising you haven’t heard of it. Often parents will doctor shop for their children to be diagnosed with the condition as they don’t want to face that their child has a mental illness, autism or neuro disability and want a physical reason for the problem.

[@TM-nq4tt]

That’s because corporations make money off of their suffering by hiding the real diagnosis

[@TM-nq4tt]

IVIG and antibiotics cured me

[@Firemandave911]

Evie, As a paramedic here in the states I want to thank you for the educational and informative video! This information has helped me understand not only your situation but will also help me pick up on things in my job that might have gone undetected. I am also happy to hear you now have options and hope the best for you to get some relief and maybe a little normalcy in your life! KEEP SMILIMG!!

[@thistrippyhippie]

oh my gosh this is amazing💕a huge thing to look out for is dilated pupils…this is a BIG indicator of brain inflammation 🧠

[@Firemandave911]

@@thistrippyhippie that's always a sign to check for head injuries that's why we shine that little light in each eye. 👍

[@jamesmayle3787]

Please read at least three books of the Bible. The first book of each testament and one you chose yourself. As you do practice forgiveness. It’s an important step most skip. The Bible is truth. Jesus Christ is Lord//

[@johnchauvin2183]

" She dances in a ring a fire and throws off the challenge with a shrug " - Jim Morrison. This instantly came to mind after this video. You are such an inspiration to all that suffer from mental health and even those that do not. Honestly I think you should be nominated for Damehood with your work both Nationally and Internationally. Thank you, Evie.

[@Melsincatuation]

I have been trying to spread awareness of this illness forever! I actually developed it when I was 8yrs old back in the late 80s. Thank God my mother found a doctor who understood PANDAS! After a few mental heath hospital stays with no improvement!! Got worse!! I had severe OCD, a strange exercise compulsion , and.seemingly anorexia !! It came on quickly one day...unlike EVIE, I was fortunate to catch this early and with a round of strong long term antibiotics all my OCD and anorexia vanished. I have been researching this disease for a long time and trying to spread awareness. When talking to a parent with a child with mental illness symptoms I encourage them to find a doctdithat understands PANDAS. Like Evie's case, where the doctor laughed at her when she mentioned PANDAS, this tends to be the norm, sadly. As someone who has studied human biology and anatomy, and pathophysiology and physiology, I have no clue to why this is such an alien to many doctors!! I look at it from a cellular, physiological, cerebal, and even psychological ..and I can completely ,without a question, can see how PANDAS IS REAL...ITS NOT SOMETHING MADE UP...I often wonder how a doctor can actually not consider PANDAS as a diagnosis!! If I were a physician and a child patient presented with a mental illness, no matter if it was sudden onset or not, the VERY FIRST diagnosis that would cross my mind and test I would perform would be for PANDAS. !! Why treat something like a main disease when it is just a symptom of an illness that is easily treated, especially caught early. Also like Evie, if it is not treated early , like I believe many adult Americans who are suffering from mental illness, actually, at one point in their childhood,could have been easily treated and would jot be suffering from an adult mental illness. But the longer the infection goes untreated, the more damage it causes and often the results have now become a lifelong mental illness that's managed with Psychotropic medications, oh surprise!! Kinda interesting how the pharmaceutical companies dont.want doctors to treat PANDAS.!! I actually had a friend who was a pharmaceutical rep and actually quit her job because of what she was told about their belief on PANDAS. Keep spreading awareness EVIE!!! I'm sure many parents out there have seen ur video and have helped prevent a medical disaster in their child. I'm also trying my best to bring this to light!!!Thank you!!!!

[@molloblin]

I know it feels frightening to see a doctor have to google something but it’s good to remember that they’re people too, and while there are absolutely crappy doctors out there who don’t believe it exists because they don’t understand it, even the best most up to date doctors can’t be aware of every possibility. You said yourself that it’s very new knowledge in the medical community. The fact that he was willing to look it up would make me feel that he was listening to me, wanted to work with me and wasn’t too proud to learn about it with me. Obviously we don’t know your history with your GP, but at least from that interaction it seemed like he was acting in your best interest. Much love, M

[@thistrippyhippie]

no yeah absolutely, my GP is lovely i’ve known him since i was little, it just felt very disheartening 😬

[@jamesmayle3787]

Please read at least three books of the Bible. The first book of each testament and one you chose yourself. As you do practice forgiveness. It’s an important step most skip. The Bible is truth. Jesus Christ is Lord//

[@spicysabsroll9022]

hi evie! as a long time follower/high school teacher, i just wanted to let you know that a few months ago, your sharing of this info on pans/pandas- led me to also share this info to a colleguege's friend- who has a child that has been searching for an answer for years- and was finally diagnosed with pans! I know sharing stuff like this online is rough, but it is so amazing the impact youve made. thank you so so much for sharing!!

[@ntf2049]

I got diagnosed with P.A.N.D.A.S last month nice to see you covering this now, feels like fate honestly. I use to be plague by strept infections to the point I got surgery to get my tonsils removed because of the damage done by it, when I was little my mom said that after getting severely sick over night I stopped eating and my foods of choice where severely shrunk. I also developed pretty bad mutism all of which I struggle with today. I never got a diagnosis for this until now at 24 because my wrong diagnosis lead to me be bedridden. After being diagnosed I have finally been able to slowly recuperate with adequate treatment, but as the time goes by I fear this is definitely going to be a permanent issue and I won't be able to make a full recovery

[@christinabrown6442]

My 8 year old daughter has seemingly developed severe OCD and anxiety issues. I first noticed slight changes in her behavior a couple of years ago after she contracted strep. Then suddenly after that slowly her behavior has changed, and recently gotten way worse! And noticeably after she was sick again twice in the last couple of months with strep again and then recently COVID. She has all of the symptoms. I just hope her pediatrician listens to my concerns. Made her an appointment for next week, and hopefully we get more answers. I just want my happy child back 😭😭😭

[@Evelyn-zn6td]

I hope you got help. My 9yo has pans and is doing much better.

[@TM-nq4tt]

IVIG and antibiotics cured me of the same

[@zelized486]

I remember the first time I heard about PANDAS was some medical drama where they said it wasn't real, which is so frustrating considering the research that is out there. So glad you have finally got a diagnosis and are finding things that help you with managing it

[@elliottkoschak6492]

Same here

[@Blackhorselove1]

I never realized that an infection could trigger something so much worse than the initial illness! I’ve never heard of PANS or PANDAS up to this point. I’m so appreciative of these informative videos, Evie, and super honored that you feel comfortable enough to share your medical journey with us.

[@sonofplato]

Indeed an infection can trigger so many autoimmune disorders. Thoughts are that Rheumatoid Disease can be triggered from an infection many years before the disease itself manifests.

[@medallo143]

@@sonofplato same with Alzheimer's. It might have a viral component. Also in some people COVID has long lasting effects that are just being researched

[@annasutton6359]

It’s a shame you could never be a teacher because from this, I could absolutely see you as a teacher. I understood all of this and I’ve never heard of it before you were diagnosed 💜

[@thistrippyhippie]

🥺❤️

[@arieltirrell12]

Thank you so much for spreading awareness!! i love how you are so generous and teach us stuff that we don’t know!! Your hair is absolutely beautiful!! You are an amazing person!! I’m so proud of u evie❤️ I’ve been following you since 2019 your doing amazing!!

[@thistrippyhippie]

thank you so much!❣️✨

[@arieltirrell12]

@@thistrippyhippie you are very welcome evie❤️

[@add_xtine775]

I just am so happy for you that you FINALLY have an answer and a good plan in place for treatment. It's incredible how often pandas occurs yet I've never heard of it. I really hope that it becomes standard in a drs repertoire of disorders to check when those symptoms occur bc the outcome seems so promising but without the diagnosis and treatment it seems very scary to go thru. Thank you for the education on this topic. I hope things continue to look up for you

[@jamesmayle3787]

Please read at least three books of the Bible. The first book of each testament and one you chose yourself. As you do practice forgiveness. It’s an important step most skip. The Bible is truth. Jesus Christ is Lord//

[@kittygamer212hewo9]

I'm so glad that you have done such good research on PANDAS. Because, as you said, it is not very well known, despite being rather common, and misinformation can be spread easily. My sister has PANDAS and she made a shirt for a fundraiser and it said PANDAS not rare, just rarely diagnosed. I'm so glad you have the right diagnosis and looking into proper treatment. Good luck with your new diagnosis adventure!

[@Maddiebanta-cg7pn]

My sister Eden has Autoimmune disease and she can have an anafalactic allergic reaction to anything sorry for my spelling :\ but evie you have helped me because I'm seeing a psychologist because be parents got worried for me repeated movments , not esting, learning disability, OCD, anxiety attacks and you have helped me actually get through that stress for me love you!!!

[@puffballmushroom]

I had a rather long break from youtube but coming back and hearing you're doing better makes me so happy~

[@Pootie_Tang]

I've been watching your content for a ~ couple of years now, never dared to suggest anything relevant to the medical side of your life, but I'm in shock your never underwent any kind of anti inflamatory or anti autoimmune treatment, even without PANDAS diagnosis... Beacause even withou PANDAS, there's a common (as I thought) idea floating around and between medical professionals and those who are ill with tourettes, that the cause of this desise is some type of autoimmune reaction. Anyway, I'm geniunly happy for you now that you are getting treatment that seems to work, bless you, wish you well! You are my favourite trippy hippy indeed! =) Pardon my English. Greetings from Ukraine!

[@krystiankosowski4617]

Thank you so much! My Son after over a year had diagnose of Pandas, now we are check all possible way to treatment, over a year was like nightmare, so long way to hell and back, im so happy to get thoes information!

[@parkersluck]

Thank you for sharing💚 I’m so glad the treatment is starting to help you. I’ve also been diagnosed with PANDAS and i’m 22. It’s been a hard journey. You’re not alone!! I hope it keeps helping and you keep improving xx❤️ I found out yesterday from an Allergist Doctor that I have 82 and some severe environmental allergies that trigger some of my PANDAS symptoms too. It’s shocking to me how many doctors don’t know about PANDAS, and the lack of treatment options available for teens and adults. I hope people become more aware and it becomes more known xx

[@thistrippyhippie]

me too!! my allergy level was off the scale😳 we’ve got this💕💗

[@riverdunsmore4758]

i know this is off topic but GORRLLLL YOUR HAIR IS BUTIFUL!

[@jjfitz9849]

Hi! I’ve been searching for an answer for the source of my tics for ages, and now I’m getting tested for PANDAS tomorrow! Thank you so much for raising awareness, I wouldn’t even know about it if it wasn’t for you 💚💚

[@anname09]

Any results? We are curious :)

[@pedroguzman5658]

I experienced pandas too, I had a very bad anxiety crisis one time,I admire your courage for being an outstanding KZbinr and being with this condition,I admire you,thank you

[@P-Bass_Pete]

I know this was 2 months ago and it's probably changed by now, but your hair looks fabulous! Love the color and how it's layered in

[@AleinWonderland]

Thank you so much for this! I have almost every symptom you listed and I have never heard of pandas before!Will definitely be looking into it now! Thank you for educating the world! You have served as a role model for me as a person who has very severe tics. You help me understand what I’m going through and make me feel less alone so thank you so much beautiful!💕💕💕

[@thistrippyhippie]

feel free to click the links on the description and see if you can relate x

[@michete]

Thank you so much for this video!! I'm 27 and deal with OCD, anxiety, bipolar disorder, tics, and dissociation and I wondered too if I have PANDAs (I had strep infections more often than not it felt like when I was a kid). This was very educational, hopefully I can talk to a doctor soon 🖤

[@lindseyparr396]

My daughter is 14 she followed you for a while now as for first six months we thought Olivia had mental health and tourettes see found you a comfort. Physchosis set in 6 months after tics and mental health concerns! Like you she is PP private diagnosed and off the NHS she has FND, tourrettes and anxiety disorder! We are on month 15 of treatment and doing well but still quiet a way to go. Thank you for speaking out xx

[@charcoal222]

i just saw you on the news about teagans fundraiser! i’m sad that i didn’t know anything about it i would’ve tried to support it!

[@isabellaflores55]

It makes me happy to see awareness being spread about this! 💕 Also another fact about PANDAS/PANS is even pool chlorine has effects on my pans just to say how sensitive you can be and also for the abnormal movements I know as well they linked Sydenhams Chorea to it which causes abnormal movements. Sending love! 💕 great video 😊

[@faeriesmak]

Thanks for putting your story out there. I am sure that it will help a lot of people, especially ones looking for answers. I had Guillain Barre syndrome years ago and was diagnosed with everything from anxiety to fibromyalgia to “it’s all in your head”. I finally figured out what was going on when someone read something that I wrote about what I was going through online and reached out to me.

[@iquestionexistence8730]

Very interesting, thanks for educating me! All I've really known about this is that some people didn't believe that it was real/still don't? So I'm glad you addressed that in this video :) I thought it was just a similar thing to Fibromyalgia or Chronic Fatigue Syndrome/ME, or DID, in that there was stigma around it due to people not believing in it. It's a real shame because people like you go misdiagnosed or undiagnosed for a long time due to the lack of education, awareness or funding for studies on these conditions. A similar thing happens with a lot of chronic illnesses, and also different neurodiverse conditions like ADHD and autism, and it tends to affect AFAB people and people of colour who are overlooked. A similar thing happens with endometriosis I think, where it's just dismissed because it affects AFAB people, which sucks. And thanks for clarifying that adults can have PANDAS too because as soon as I heard pediatric I knew some people would assume it only affects kids haha, I'll now be googling this and learning more

[@thistrippyhippie]

thank you for your comment!💕if you wanna research more you can use the links i’ve left in the description 🥰✨

[@elena-is-awesome]

This sounds like a really helpful and educational video, Evie :) Thank you for sharing this ❤️❤️❤️ YOU’RE HAIR IS SO PRETTY 😍

[@Dark122Knight]

Such a lovely video bringing awareness to this. You are a beauty, inside and out!

[@arjc5714]

I had strep a LOT as a kid, it circled my small hometown over and over for years, they removed my tonsils because of how often they would almost close my throat. I also have a lot of the symptoms you described. I may look into this.

[@adrianflory4017]

so good to see you calm.so used to seeing you having ticks,and the banter with your mum..dont let the trolls get to you.i had never heard of pandas,but you explained it really well,and this 56 yr old learned something new.god bless

[@petersmith5363]

Thanks for the explanation, Evie. Like most people, I had never heard of PANDAS/PANS, and was looking forward to something from you on this. As always, you have a good insight into your own health status, and communicate it well. You're also looking great - if it's not too cheeky for an old man like me to say that! Good luck with the new treatment regime. Keep us posted on how you're doing.

[@thistrippyhippie]

thank you very much🥰

[@petersmith5363]

@@thistrippyhippie Don't mention it! It's good to see you looking so well.

[@georgebusby6466]

Your hair is absolutely BEAUTIFUL!!! I don't care what anyone else thinks, it's drop dead gorgeous!

[@georgebusby6466]

OKay, sweetie... I was, in my younger years, a Plasma donor specifically for Plasmapheresis. So I feel I can address this. The process of Plasmapheresis is where a unit, (pint), of blood is taken from the donor and then it is put into a centrifuge and spun until the heavier red blood cells collect at the bottom of the bag and the lighter white cells, commonly called plasma, rise to the top of the same bag. The bag is then placed onto a gentle squeezer and the plasma is collected off the top and the red cells are returned to the donor. Then that whole process is done a second time, and the donor is sometimes paid up to 20 dollars, sometimes the donor is not paid at all. However, the plasma is always sold for a rather large amount of money. At least it is here in the USA. The NHS might not do that, but they have to get their plasma from somewhere.

[@PerksJ]

Thank you so much for what you do. I have a student who I barely met last year, she had struggled during the pandemic but she increasingly got worse after coming back to school. OCD, couldn’t make it into the building, had tics and they mentioned FND. I sent her a link to your page when I learned that, I’m not sure if they ever watched your videos but I will definitely mention PANDAS/PANS to the parents when I meet with them this year!

[@thistrippyhippie]

how old is she? wishing her the best x

[@PerksJ]

@@thistrippyhippie 15/16 And she’s brilliant! I hope I get to see more of her this year!

[@Mario_super_bros]

Thank you for educating me more about PANDAS/PANS! 💚🐼

[@angrymonkey123]

I had Scarlet Fever when I was 12 in 1994. I was very sick and untreated for nearly 3 weeks. My mom just thought I had the flu until I developed a rash. I remember my joints hurting terribly. I developed adhd, had crying episodes out of nowhere, separation anxiety, joint pain, depression, chronic fatigue. I still have joint pain, chronic fatigue, and ADHD to this day. Of course correlation doesn't imply causation.

[@juliae4771]

YOUR HAIR WOW IT LOOKS AMAZING okay that's out of my system, now I can focus on PANDAS

[@SparrowHawk183]

I'm so glad you have a clear diagnosis and treatment for PANDAS! Thank you so much for sharing all this information too, hopefully more people and doctors will be able to raise awareness about PANDAS, and also find your channel for all your creativity and uplifting videos too. Thanks Evie, take good care!

[@holly_may_x]

I just love your hair so much!! I have that colour all over xxx

[@rogerlacaille3148]

Thank you for sharing everything you experience, everything you learn...you're a wonderful Lady, Evie...having M.S, I understand about autoimmune disorders.

[@Lifeisnow1234]

I developed Hashimoto’s (autoimmune hypothyroidism) after getting Mono several years ago, and it has caused so many systemic issues for me. Luckily it’s very well studied, and there is relatively decent symptom management, but it’s crazy how many autoimmune diseases are caused/triggered by infections 😬

[@AlannaDrury]

Brings light to Lymes and co infection. You could have Lyme and the co infections . The great mimic ! They make it very hard to get real help! Also you can get PANS/PANDAS. Great to hear your story. Much love and luck for those who are Immunity stuck

[@tofutofutofu444]

I am SO happy to see your with the right diagnosis finally, and seeing someone with a platform as big and positive as yours sharing so much information. i remember hearing about PANS/PANDAS a couple of years ago and being in shock that it wasn’t really heard of. I learned a lot from jordanna and try very hard to get the word out there !!

[@cfantu]

You are the most brave girl in the world. I can suppose your encouraging came from your family and all the people who loves you. Your own experience help so much for other people diagnosed PANDAS/PANS. Thank you for your time to showing us about you and PANDAS/PANS Take care of you❤

[@cailey_ava_]

I’m happy that you have the correct diagnosis and that the treatment has been helping and that your seeing improvements💜 thank you for educating people about this and spreading awareness:)

[@shirakilner2910]

My partner went to a specialist who thought they might have PANDAS but currently they are not diagnosed(rn they say it's FND) This was very educational, thank you so much Evie, I'm less scared now:)

[@fog152]

Thank you so much for the info. ♥

[@acfitnesstips6303]

This is an amazing video. Thank you so much for sharing!

[@colinphilpott3700]

Long may the calmness remain. Stay strong Evie and keep the humour around even when positivity is down.

[@anitarucker8589]

I am so insanely happy for you and your family. You finally have treatment and hopes for a more stable future!!

[@drjuluka]

You have no idea how intelligent you are. Brilliant.

[@adriana86]

Thank you for all the information!

[@sherriefox6358]

Bless you. You explained it beautifully. Thank you for educating us. Much love. 💕🥰xxx

[@ashleyriosrizo]

The fact that you still have a huge smile on your face after everything....❤

[@QCRonsyn]

it's so nice to see someone else with PANDAS talking about it! I was diagnosed way back in 2013 and felt very alone until now

[@rebeccajones6719]

I'm so delighted that you seem to have a clearer picture of your illness. I hadn't heard of pandas and I find it so interesting. Although I obviously wish you didn't have suffer with it xxx

[@alexjackowski1329]

So glad you are getting the treatment you deserve and need!! You just seem so much lighter and brighter if that makes sense! I am sorry that it’s chronic for you but glad you can be an activist for this autoimmune disorder! ( I hope that’s the right name)

[@Strwberry_x]

I love your hair! And thank you for telling us about this we lean a lot from you everyday :)

[@EJakProductions]

I have developed epilepsy because of a traumatic past. It’s been around for so long that my brain rewired itself and now it’s there. Since some things turned chronic for you as well (the anxiety driven things?), maybe medication has some influence. I of course do not know if you have already tried this. Your explanation about PANDAS is very clear. I’m wondering, have you had an infection with strep that your parents have noticed, before all of your symptoms started. I am so happy for you that your treatment is changing some things for you. You are amazing and every time you tell more about your issues I feel more amazed how you handle this, how you turn your issues into educational videos. I also deeply respect your parents (most of which I’ve seen your mom because of your videos) You guys are such a loving family and the world is a better place with you guys around.

[@howellaboutno9500]

She’s probably had a strep infection as that’s probably the biggest criteria for having PANDAS lol

[@caesiousarchives]

Thank you for educating about this - a fellow 🐼

[@jlopez665]

I don’t know how to explain it because I also have/had grand mal seizures. Congratulations!!! I’m so happy for you, I understand the feeling of not having recurring seizures!! I’m over joyed that you are getting better.

[@annabellerose678]

so happy for you that you are finally getting the proper medical care you've needed for years!

[@jasonlusk7287]

Lovin your look in this vid !

[@florencehebert6487]

i have an autoimmune disease and it's really rough physically and mentally, but everytime i watch your videos you inspire me!! i'm certain that it's not easy and that every day is a battle... but you are sooooo very courageous, creative, strong and inspiring!!!!! you are a ray of sunshine in a clowdy world!! sending you love and strength from the french part of canada!!!

[@namtellectjoonal7230]

Thanks so much for making this video, I never even heard of PANDAS and it's honestly a bit shocking that something as common as this isn't more well known, especially among medical professionals. Also on an unrelated note: I really love your background, it's so cute and gives off fairy vibes

[@CaribouOrange]

I really enjoy seeing you calm, don't feel pressure to have tics. That just isn't healthy

[@tieragibbs3045]

oh my gosh! your hair looks so so cute!!! also, thank you for continuing to spread so much awareness 🧡

[@janinerobertson425]

The hair is amazing!! So glad you're finally getting treatment and help that's working god knows it's been a very long fight and I can express how pleased I am to see you finally winning a bit!! This makes me wonder a lot about my Son and I think I'm going to be doing a lot more research thank you so much for educating us it means more than you could ever know bless you xxx

[@Luna_illus]

Thank you for taking the time to educate us about your diagnosis. I am so sorry you had to experience the pain of being misdiagnosed and being medically neglected. I can relate for sure. I wasn’t diagnosed with Crohn’s until I was 18 even though I had been experiencing flares since I was 11 (or possibly even younger) but after I was diagnosed it helped us realized that my two younger sisters had it as well and since they caught it in them early they are both doing much better than I am thankfully. A correct diagnosis caught as early as possible is so vital for people suffering from illnesses and such a huge part of finding the path to healing/a cure or if no there is no cure available then at least it can help in gaining the best possible quality of life. So yeah, I can definitely relate and I wish you all the best with your future treatments. Oh and of course, LOVE the hair!

[@brianmcrock]

What a great summary of such a complicated subject! Thanks! You've really got me thinking now. I am so glad you've been feeling better! Again, you rock!

[@lavenderlemonade4322]

Evie you are so lovely! I'm sorry it took so long to get your true diagnosis but glad that you have it now. Basal Ganglia (updated term is basal nuclei) is a center in the brain that works on refining movement. It is a central area within the brain for starting and stopping movement, sequencing, reinforcement of movement, and the associations between emotions and movement. As a pediatric occupational therapist, I see PANDAS/PANS a lot. I will often refer out to MD's but it is ultimately up to the caregiver to push for the testing after the referral.. another note, the basal nuclei is also associated with hypokinetic (Parkinson's) and hyperkinetic (Huntington's) disorders of movement

[@marshmallowsareprettygreat2005]

I am so happy for you! It has to be SO relieving to finally be seeing real positive changes with your health and medications that actually work. I hope your doctor is able to continue helping you in the best way possible! 💜💜💜 -also, your hair is amazing 💜💜💜

[@PTCX]

Greetings beautiful Evie , you are amazing. So good to see you keeping your spirits up when having to deal with these trials through the prime of your life. Your comment about some of the symptoms mimicking symptoms of other diseases really hit home for me.When you first told us you had a proper diagnosis I looked up PANDAS and I was surprised at how many symptoms we share,even though I have very different illnesses. I'm no stranger to Autoimmune issues,they got me to where I am today.Graves messes with most organ functions,including heart and brain,so it plays havoc with me.A spinal injury and Foraminal Stenosis set off some wicked physical ticks and spasms.Some people think I have tourettes but it's just that I growl and swear at my body when it won't work properly. So I can empathise with some of what you go through on a day to day basis. I hope your treatments keep working well for you.And stay happy,your smile always makes my day brighter.

[@neosluice3806]

love the calm energy (also really love your hairrrr)

[@bjandmercy]

I love that you have the words to clearly articulate what PANDAS is and what's involved with it. I wish I could do that with my CRPS condition 😔. Oh and congratulations on a low tick day!

[@angelamolnarpemberton5145]

You are an amazing and beautiful young lady. Your parents are amazingly parents. They are the love and support that every single parent needs to learn from. 🥰 god bless you and your family. 🙏🙏🙏🥰😊🙏🙏🙏

[@Mrssarandy]

Thank you for this. I'm so sorry that you ever have to deal with internet jerks. Unfortunately, that's just what some people need to do to feel relevant I guess. But you're awesome, and I hope you ignore the rude ppl and keep uploading. ❤️

[@laurenescamilla2529]

All I want to say is, I am so incredibly proud of you for being so open about your Tourette’s and now your newly diagnosed P.A.N.D.A.S disorder despite the backlash you have received in the past from the media. it truly was absolutely ridiculous and not okay in anyway shape or form and I’m happy that so many people agreed and we’re on your side to support you. The fact that you’re still on KZbin speaking your truth and sharing this information to spread awareness and your message about Tourette’s is very inspirational and admirable. You truly are such a strong and amazing young soul and women. Just as a reminder, never ever let anyone (especially online strangers) dull your shine or take your energy away from you. I’m sure you already know this but I can understand that it gets tough at times when so many people are watching. Lastly, I’m sending you so much love, support,and positive energy. 💕 Keep doing you girl you’re absolutely amazing!

[@doghorsefish9320]

I had no idea that this disorder existed, what an educational video. We need more information on this. You said 1 in every 200 people have PANDAS, for how common that is i really hope that medical science can invest more resources into the study of this odd & unknown disorder. Thank you for sharing, & thank you so much for being so open & willing to share tough aspects of your life to complete strangers on the internet. Much love from Washington state, USA.

[@kenk7451]

The pink hair looks great! Keep up the fight. We love you!

[@shelley2he844]

I'm so sorry it took so long for you to get a correct diagnosis! Seven and a half years. Omg. My heart goes out to you. I'll be keeping you in my prayers and may God bless you for raising awareness and telling the world about this severe illness. It is really commendable of you to do this. I hope in the future that kids with PANDAS get the correct diagnosis in a reasonable amount of time. Best of luck Evie ❤️💯 stay strong. Much Love to you from Ireland 🇮🇪🍀💯

[@abrahama2643]

Thank you for this. Since receiving a diploma in Community, Family and Child Studies I've been working in a community center in Victoria BC. As a community support worker I have to be prepared to support people with all different types of human conditions. I've learned a lot from you over the last year or two. So thank you.

[@girlsbasketballharvey2312]

Loving the pink hair!!! So happy your having a good day 😍

[@recurve032]

That is brilliant that you have finally got a diagnosis! That in itself will bring some peace of mind and also lead to a positive treatment pattern i am sure. I dont know enough about the brain inflammation aspect, but i would have thought that as you are young there would be a definite ability for the brain to help heal itself to a good extent, and with ongoing treatment things should improve for you a great deal. 🙂

[@hazelmead4126]

Your hair looks gorgeous… love it! 💗

[@BrentStewart]

Thank you for mentioning that this doesn't always just appear. My son (who is autistic and meets all of the PANS criteria as well) didn't start instantly over night. His particular PANS irrational fear (or phobia) is written and spoken words, logos, letters, symbols, and number which is colloquially known as logophobia. It started small with a few words like BUT and HOWEVER followed a few months later by more prepositions, conjunctions and filler words like UM, UH, and later HUH. For a while it was just seen as part of autism. But a couple years later during the 2021-2022 school year I noticed the separation anxiety and not wanting to go to school and a massive increase in the number of words which triggered him. By summer 2022 he refused to return to school and isolated himself in his room as the full on OCD set in with a compulsion to seek out anything with words on it (down to tiny "made in china" engravings on his toy). Not to mention all of the other "fun" things that come with PANS. Not many doctors recognize it here in the states either. And his pediatrician was skeptical and did a bunch of researching before reluctantly prescribing antibiotics.

[@courtney_marie_paull]

I don't really know a lot about PANDAS/PANS, so this was very helpful. Thank you. 😊 I am so happy you now have your diagnosis Evie. I know how much of a relief it is, as I have just been give my Autism diagnosis after about 10 years of not knowing what was wrong with me. 😩 I love you Evie. 💝

[@kriegknight8039]

Thank you for raising awareness and educating us once again. Your strength and humor through all your struggles with all your health issues is truly inspiring! You're lovely and your hair looks awesome! 💕

[@wombatperson5431]

I had a family member have a similar experience years ago, she was sick for nearly ten years and I didn't see her for five. I never knew what she went through until I watched your channel.

[@doghorsefish9320]

Nice to hear your voice & see your face again, i hope that you & your family are doing well (: I dig the pink hair!

[@sufisuzy2287]

Thanks for educating us about this. Anthony Williams aka "Medical Medium" is a huge believer that strep and ebv causes many diseases today. The good news is he has a whole diet protocol that keeps strep under control. He's controversial, but none of the food/supplements he suggests are radical, so I really recommend checking it out. Many people have had turnarounds in their health by following it. Hope you feel better dear.

[@EmOrganically]

Thank you for the education Evie! :)

[@BIFFALA]

Evie there's something so calming and beautiful about your videos. I struggle watching long videos like this without getting disingaged or just closing the page down, but with yours I could just sit and watch you for hours. Thank you so much for all your work, I love you

[@jamescaneda9515]

You look amazing. I love how your cheeks have rounded up beautifully. I hope your health improves greatly. God loves you as much as we do.

[@DCLifeJourney]

You are an amazing and inspirational young lady. This information is so valuable to share, to make others aware and notice the early stages. Thank you