Answering Your Questions About PANDAS/PANS || Q&A
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- Опубликовано: 17 сен 2024
- hi everyone! It's PANDAS/PANS/BGE Awareness Month!
In this video I answered your questions, including ones I get asked all the time, and talking about my personal experience. This is edited in a new way, I am trying new things so let me know if you like it!
Hope you enjoy & learn something. (I am not a professional, I just talk about what I know, what I have learnt through 9 years of living with this condition, and what I know from my doctors etc)
I have been nominated for an award! Vote for me here if you would like: docs.google.co...
(scroll down to find the tiktok influencer section and select my name)
my shop (merchandise, my book) www.thistrippy...
my instagram: / eviemeg
my tiktok: www.tiktok.com...
PANDASPANS info and official websites: aspire.care/
www.panspandas...
info on Bartonella & Babesia: aspire.care/bl...
my REAL Facebook page: www.facebook.c...
the pandas look so soft aaa🐼🌿
Thank you! I have 2 kids that have been diagnosed with PANDAS. This was 10+ years ago. Getting the diagnosis and any kind of treatment at that time was extremely difficult. They have both done well. I wish back then we had more options. I know many now are getting IVIG if they can fight the insurance and get it covered (here in the USA). My daughter's greatly improved after getting her tonsils out. That cut back on her strep infections.
I am glad you found the help and doctor you needed. I know how frustrating not being able to get the treatment is. ❤🙏
Thank you Evie for this video! I love your advocate work. I know that PANDAS exist because of you. As someone with chronic psychiatric issues and chronic pain you help me a lot to feel less alone and more understood. ❤ much love from Hungary
we all appreciate the work you do, you are such a strong incredible person evie xx
Hey Evie, I just wanted to thank you so much for putting your opinion about FND out there. As someone who has been struggling with symptoms that don't quite fit FND, but has an FND diagnosis, what you said is totally right. Doctors need to know more about this and FND shouldn't just be handed off because it's easy. It's also horrible how medical professionals treated me once that diagnosis was made. I love what you do and how much I know about PANS/PANDAS because of you. Keep up the good work! ❤❤
I've had severe OCD as well as other mental disorders/mental illness all my life. I recently found your channel and you inspired me so much. I was feeling really hopeless but you made me want to keep trying. thank you so much. 💜
So nice to see you again Evie😊
POTS is a nervous system disorder and I haven’t done any research on this with pans specifically but it is often triggered by neurological conditions that cause nerve or brain damage it just irritate the nervous system. It often comes along with migraine, concussions and even infections so i’m not surprised it often develops with pans ❤
Pots and pans? Lol no I shouldn’t laugh
Well, considering Evie's ticks, a concussion is not farfetched.
@@centaurora913 My 13 year old has POTS and PANS-it is a horrific life.
Reminds me of how Lupus was years ago. Something that looks like something else. Stay strong, Evie! You’re awesome!
Thank you for educating me on pandas/pans as I’d never heard of it before following your RUclips / tiktok journey
Thank you so much for spreading awareness for this condition, I only heard about from your channel and we are now looking into it. Ive had it since I was 5!! and we are only now looking into it, thanks to you
This was really interesting and informative, I virtually knew nothing of these conditions before watching your video, it was nice to learn a few facts about them! Definitely enjoy these "sitty down talky ones" 😁 Also, best of luck on the award! Fingers crossed 🥰
Hi Evie! I’ve been diagnosed with Fibromyalgia and I feel like I’ve been dismissed with it because the doctors don’t care? I’m not sure what to do, but it’s comforting to see that I’m not the only one that feels like the NHS diagnose without looking too far into things ❤️ I’m glad to see you posting and I hope you’re doing okay! 🙂
I love these types of chill videos, even though I have a very short attention span, I sat through all of this and would gladly do it over and over again.
It’s nice to see pandas getting some attention. I was diagnosed at age 5, it was horrible. I just get sick all the time. Even as an adult.
I'll definitely be certain to watch it, hope you're well, lots of love. 💜
From being confused to embracing the condition❤❤❤❤
Thanks for this video Evie! I really hope your content helps bring more awareness to these conditions, and helps people get the right diagnosis treatment.
I also hope to see medicine/healthcare advance to a place where it is easier (and more accessible) to find the root causes of functional disorders/diseases like IBS, fibro, FND, where there are no "apparent" injury/damage/disease to organs. In some cases, I'm sure there really is nothing to find (I'm no doctor), but I think in a lot more cases, there are probably causes that are just not being picked up by the readily available tests, and therefore a functional disorder/disease diagnosis is given. Like in the case of your PANS/PANDAS being misdiagnosed as FND.
I was diagnosed with IBS (ie docs have tested some things and can't find a cause for your digestive problems, so it's IBS). But I find that diagnosis very unhelpful for treatment, changing my diet helped for awhile but I felt like that was just a band-aid solution that lessened the symptoms some but added more anxiety to my life (in trying to avoid certain foods all the time). I think probiotics have helped (though it was a struggle to find the right ones), therapy and mindfulness helps, but ultimately it is so hard to know what will work for each individual when there is no easily discernible root problem to treat. We don't yet fully understand the gut microbiome or have good tests for deficiencies in that department. I think my IBS was at least in part due to using antibiotics repeatedly for reoccurring UTIs, on top of NSAIDs for jaw pain, and a very stressful period of time in my life. But it seems like I may never really know!
one detail that i really love is how you decorate your room and stuff with pandas the animal. what an awesome way of supporting yourself ❤️🐼
this video was really reassuring as someone with pandas pans pots babesia and a lot of other things. 😂 These conditions are not usually talked about and i really thank you for spreading awareness because pandas pans from what i've seen is controversial and it shouldn't be that way because it is ligit and it's something people struggle with everyday. a lot of the symptoms you talked about i have too and i 100% think pandas/pans and pots are related. (also i think it's pretty funny to tell people i have pots and pans 😂) 🐼 💚
Can’t wait to watch it 😊 ❤
hi evieeeee i’ve commented before and i just wanted to say hi and i’m so happy and proud of u for continuing to spread awareness about pandas❤️
I love you evie, you are the true definition of inspiration.
Pandas pans is something very serious, only I could say thank you very much for sharing this about this condition and also thank you for being part of this community, greetings brave girl 😊✌️
Happy PANDAS/PANS awareness month! I’ve leaned so much from your journey and your bravery too share it online and use your unique story to help and inspire others on their own journeys is truly amazing. Wishing you all the best with the IVIG!
Love the awareness.
Also Dysautonomia awareness month. POTS is one type of Dysautonomia.
Thank you so much for answering one of my questions!!🥰 I’m struggling to get a proper diagnosis because no one wants to do all the tests and it gets blamed on my mental health (no matter how well I’m doing in that area). I struggled with mental health very early on (including an ed) and there was no reason as to why. I then started developing all these crazy neurological symptoms and other mental health things kept popping up too!! In my case, a lot of it is paired with dilated pupils. This is all just so confusing especially when doctors don’t take you seriously. I’ve had an mri and an eeg done and they’ve just decided that “nothings wrong with me and I need another psychiatrist”
When you started educating us on pans/pandas, things finally started making sense to me. I brought it up with a doctor and they brushed it off as if it’s not even a real condition and that if I get diagnosed with it then I’ll just be treated as if it’s purely psychiatric. It’s so frustrating how we are mistreated and/or gaslit and get left to continue going down hill. Something needs to change!!
If you made it this far, thank you so much for reading. You have made me feel so at home and have helped me through some dark corners of my life. Sending lots of love🩷🫶💚🐼
Yay! Can't wait! Been watching your videos for a long time.
can’t wait for watch this Evie ❤
it's lovely to see, and listen to you sweetie. We love and appreciate you so much. Please remember your health comes before us :) With lots of hugs and love
Very good, informative Q&A video, and you're not boring at all. Thanks for the alert about the awareness day, and a happy birthday ahead of time to your mum, just days later. I still don't quite understand why your YT and TT channels are very slowly losing subscribers. Most of us won't be leaving. I check both channels pretty much daily, even though the YT posts are rare.
Loved the video! It was super educational. Thank you, Evie!
You're helping so many people and educating so many people
this was such a great video, and so educational. thank you for spreading awareness and being such a huge advocate💜
So beautifully and clearly explained. Also, so moving. Thanks so much for all your work and help for others.
You are helping make change in this world. Your impact is so big!
This is so informative! Keep up the great work, Evie! I have been searching for answers to do with my health and haven’t found any yet, but your story gives me hope❤
Catatonia is a symptom of long term Pandas, a geez well that explains that..
Other than that I relate to A LOT of this, unfortunately like you said, finding a doctor that even believes it's a thing, let alone do any correct blood work other than slapping me with Tourettes and that's it, has been my uphill battle for the last years
Your so honest and inspiring
Thank you so much - this was really helpful. Keep going on your journey cos your amazing ❤❤
October 9th is my dads birthday!! I’ll never forget it now ❤
Very interesting and informative, Evie. I wondered how you were getting on. Always impressed with your understanding of your health issues and how well you express yourself. It seems that there needs to be some consciousness-raising among the medical profession about PANDAS/PANS. You have made a good start on this. PS: When you put your gymnastic clips online, I marvel at how someone so fit can be so poorly!
Ejemplo a seguir .... 💗
Your a sweetheart. You seem very positive and in control of your situation. Live with it very well. I have a brother who is disabled he has quite a few issues I actually sent him this video :-). Keep strong you can do this.
Thank you for spreading awareness. My child has PANS/PANDAS and I am so grateful to have found a diagnosis after 2 years. There is so little understanding and I have encountered so many skeptical people and doctors who refuse to acknowledge that it is a real disease! We have begun treatment and I am hopeful...but it is HARD. I relate so much to you saying that you dont feel like you. I cant communication with my child at all during big episodes... there is no response.
Have you tried IVIG? Which antibiotics do you take?
Also, would you consider getting in touch with chris from special books by special kids (sbsk) channel? He does great work and would be a great platform for spreading awareness.
Thank you for all your advocacy and information ❤ Sending you love, light, positivity and healing
I feel so much for you. I am currently undiagnosed chronic pain and mental health issues. Have been for 7ish years...
Thank you Evie for all the great information on your conditions---We learned alot today !! Be well ...
Evie, I've been subbed for a couple years but your videos haven't been coming up, until recently. You look good, and I hope you're doing well. Keep spreading that awareness.💪
Can I just say, I love your outfits and make-up
It's crazy how the NHS are they hold back a lot of treatments that could really help people a lot
Well tbf, the NHS isn't made of money.
I completely understand what people are saying, but I think that's its so easy to forget that it all needs to be funded and staff still need to get paid.
I don't think the NHS is the enemy, let's not adopt that mindset and 1) be grateful we even have one - imagine if we didn't' and 2) respect and support the NHS and it's staff, these mindsets can become attitudes and behaviours were people being to act negatively to doctors, nurses ect when the vast majoriy they are just doing the best that they can in quite tough, high pressure, high expectational situations.
Finally (😅), we have amazing people like Evie speaking up and raising awareness, just like in everyday society, medicine has stigmas and lack of understanding in so many areas, but this cannot change without people like Evie and other organisations and so on, but change takes time. Nothing can ever be perfect and how we need them to be/how they should be bc things are always changing.
I don't want people to think that I am ignoring Evie's reality, not at all. I know that what has happened to Evie happens to so many people, I know that it is a problem. I know people (not at the same degree) have had poor experiences and treatments from the NHS. But I think it's so easy to get frustrated and angry and blame (and people aren't wrong) but the NHS can't do everything, all the time, whenever we need it to.
- understanding needs to be om both sides
@@coriolis4761 always goes back to money for someone suffering a pain unimaginable like evie it shouldn't be a question
i can understand the whole doctors not taking your seriously or not knowing your issues, i have thalassemia which is a blood disorder (unfortunately it's labeled a diease..?) basically im consistently tired/fatigued, very little energy.... very low iron aswell as anemia. now... i do not have the worst version of thalassmia... which people with that version do not survive past 20 as they start to suffer organ failures, yeah mines not that bad that is thalassemia major and i have minor.
anywho back to my point during school or work i've always been called lazy or i don't work hard enough... and whenever i brought up my disorder ppl think i'd be lying. doctors don't recognize this disorder either.
and... this is really hard for ppl to believe that i am not "lazy" im just extremely easy to get fatigued, and some days i can tough through it but most i might aswell be walking around with a 100lb on each limb.
Evie, what an interesting video! Also your eye make up looks amazing! Love your content 🐼👍🏻💜😊
I'm sure you already know, you will do great things!
the beef one got me. like i’m imagine me and my mom talking and my mom asking something like “what’s your name?” and just “beef 🥩”
I’ll be watching ❤
I love the subtitles you've added !!!
This video is super helpful! thank you for sharing this information
OMG you look so different!! Your very pretty (always was) but I only recognized you by the channels name, and had to look back at earlier videos to be sure. Hope your doing well. I love the room, the colors, accent lights, and the cute pandas lol. So peaceful.
I'm in France it's late but I'm going to watch the live until the end ❤
You have not been in my feed lately. I missed seeing your videos. Good to see you again.
I loved this one!! The vlogs are great but these are my fave 🤎 Also thank you for manually captioning them because RUclips's auto option is so unreliable 😅
Hi there my beautiful soul. I've just discovered your channel yesterday and already watch haft a dozen videos from the past 3 years. Firstly I hope this message will reach your angel mother, because I would like her to know that she is one rare women and a true exemple of motherhood unconditional love at it's finest expression. As for you, young Trippy Hippie, you have deeply touch my heart and showed how divinely precious you are to this trouble humanity. I know these words will seem strange for some individual, but for one who has the eye to see, you are in all aspect, a marvelous being and a one of a kind inspiration for all to witness the beauty. Much love young Panda 💙I'll be back from time to time to share my love and admiration 😘
My symptoms are always worse in the evenings/nights too!
Yaya I'm excited to watch it😊
yooo sensory processing disorder and pans awareness month! cool!
Thank you for the information Evi, Good seeing you again, wish you the best.much love.
Yayyyyyyyyyyy go pandas!! Oh the pandas can be so fluffy when you rub on them 🐼
Hey Evie! Thank you so much for this 🥰
Unfortunately I do have another question for you😅
- you talked about how your pupils would become dilated whenever you were having an episode or event where "you weren't Evie" due to inflammation, does this mean that every time you get a strep antigen in your body your immune system begins to attack your brain, or is it just that your brain cells will forever been seen as strep?
I hope this makes sense!
Thank you for being an advocate, I am a relatively fully healthy person but have learnt so much and still idk felt honoured to watch you discussing all of this. So you're amazing! Thx
-in relation to the whole "too old to be treated", doctor's go into paediatric or adult specialties (not all I don't think..but still) like paediatric orthopaedic surgen vs adult orthopaedic surgeon (I'm sure you know this 😅) bc there are difficulties specific to children's bones (growth plates) or different anatomies (child skulls have separate bone until a certain age, before they fuse) for example, so I'm assuming that that's why. People who have trained to treat children's bodies/brains don't want to "risk it".
I can't speak for them, and if this was the case the specialist obviously should have said, but this is the only way that I can make sense of it is that way. Idk, I'm sure there's a logical reason 🙏
Every time she gets any infection ( as she has PANS which means she doesn't just get inflammation by strep)
You were really relaxed seeming in this video. I hope that you have more peace. It was interesting that your tics seemed to also be calmer. (not by how many but they were not as intense as I am used to in other videos)
im so excited for the ninth i have pandas i was diagnosed at 12 and have had since i was 7
Thank you for sharing your story. Wish you all the best 😊
Thank you & God bless you & your family. 🌹
Haven't seen the boyfriend in videos for a while. Obviously thats non of our business. Anyways great video. Keep up with spreading awareness, you're doing a great job
She has a girlfriend now and is keeping it pretty private
Babesia. Bartonella and anaplasmosis are very common coinfections of Lyme Disease - meaning that when you get bitten by the tick carrying the Lyme bacteria (borrelia), you also get all of this other stuff that those ticks carry.
Following a type 2 diabetes diagnosis 4 months ago, I have radically changed my diet lowering carbs and removing added sugar completely. One person who has been a great help during this time is Dr Robert Lustig - I've bought his books and watch a lot of videos on RUclips.
I was watching a video tonight where he was doing a presentation at a pharmaceutical company, and he showed data that linked fructose consumption to PANDAS.
I know that for my immunological and metabolic disorders, these diet changes have had amazing results, I wonder if such a dietary change might help you?
Yes. Listen to this guy.
Yayyy I’m earlyish for once💕
Hi Evie, you're looking really well.
Great video so much good information.
Blessings to you. Stay well and bright.
Evie, I would be very happy if you could answer this question, but you don't have to do it. I have been researching pandas disease for 1 year. I have tics for 7 years and in this 1 year, I have many symptoms such as seizures and catatonia, but my blood tests are normal, pandas does not always show up in blood, what do you think? Thank you ❤ love watching your videos🐼🌺
i didn't know you had paralysis as well😩🫂
you have gotten me searching down the rabbit hole of PANDAS/PANS - i had never heard of it until you got DXd. i identify with quite a lot of symptoms you've been brave enough to talk about, so now i am trying very hard to find someone who knows a bit about it to at least rule it out. i appreciate you✨
We love you Evie 💜
There are many wonderful herbal remedies. When you were talking about having to be on antibiotics and having coinfections, the books on natural antibiotics and lyme disease by Stephen Harrod Buhner came to mind. If you could give them a read, you'd understand why. Blessings to you and yours.
Such a helpful video and thank you so much for the subtitle I’m autistic and struggle with processing only auditory sound ❤
Four years ago now i abruptly started uncontrollably jerking which eased into motor tics and then vocal tics 6 months later amongst episodes of loss of muscle tone and sm more and still have no diagnosis. Finally getting into a couple specialists but without a family doctor things feel near impossible
I felt crazy the entire time- but its important that we dont ignore what we know is not right in our bodies, and continue to advocate for ourselves ❤ we will get our answers
ill definitely watch… this is ariel🥰
Cant wait to.see this beautiful ❤
Really interesting video
Love the makeup btw
Shout out to your mom and dad❤❤❤
I thought pandas and pans where the same thing. Like pans was short for it. I honestly didn’t know anything about these disorders at all
Great video… very informative!!
I do have another question though… you have lots of infections and I was wondering did you likely pick all of these up at once ie. from one tick or did the PANDAS/PANS make you more susceptible to picking up more infections and carrying them long term? Thank you!! :)
❤❤
Thank you so much! You are awesome!!! 🥰💪
If I got married and had a daughter, you would be perfect!❤
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Bookmark 18:00
i also had a hard diagnosies i had to be tested for strep annaly
I love ur videos so much and i really want to learn about this but theres too many things adding up here for me for instance i have ocd i am about to be home schooled cause school scares me, ik its probably nothing but im a hypochondriac, so i think im going to skip this video, love u so so so much keep being you 💕💕
I don't know how your Healthcare runs there your insurance system but it Usually comes down to money and that's why doctors are reluctant to ask for test or recommend certain test the insurance companies don't want to pay.
Doctors are usually also unwilling because they don’t care enough about their patients, Evie could’ve been diagnosed a long time ago but because the doctors didn’t try everything she remained undiagnosed. I do agree that funding (especially to the NHS) is a problem but it isn’t fair that they wouldn’t test someone having life changing symptoms to find out how to help or cure what is happening! 💜