From a PANDAS mom, THANK YOU!! You articulate this so incredibly well. I wish doctors could see this and hear your description. You are helping so many families!!
I haven't even finished watching this and I've had to pause to tell you how thankful I am for this video and how sorry I am this happened to you and your family. Thankyou.
Thank you for sharing this. You articulate this better than most physicians. My son has PANDAS, and I can relate to so many points you’ve made. So many times we disciplined and bribed- to no avail. He is 80% better after two years with a functional doctor treating his gut.
My son has been in an out of the hospital all summer. Due to aggression and rage. I am going to look more into this. A lot of what you say in your video when you get angry is just like my son!! Thank you for posting this video.
My child doesn't have Pans/pandas (ruled out by antibiotic regimen) - but does have Tourette's Syndrome and rage attacks at times. It's very difficult to live with, but we know our child doesn't intend to have rages or meltdowns. Validation is key, these always occur for us when things are percieved by our child not to be fair, if they have been masking or supressing or are just completely overwhelmed. Thank you so much for being so brave & sharing how difficult it is. For fellow parents, I'd urge making your house tic & rage proof as much as you can. Reasonable adjustments go a long way to a happier home.
100% agree, but also be aware that an antibiotic regimen doesn't always rule out PANS - that's the mistake I made. I didn't respond to the first antibiotic given so it was assumed I can't have it, however some people only respond to other interventions like Steroids or IVIG and may have a chronic antibiotic resistant infection so it cannot be fully ruled out by not responding to antibiotics. It is vital as you say to be accommodating and make the house tic and rage proof. More people need to be like you and understand that no one intends to have rages and that they can be triggered by masking/suppression/overwhelm.
Thank you for mking this video. My son struggles with rage and other problems as well. I am going to show this video to my daughter bc I feel seeing that u r close in age and hearing ur experience, it will help her understand more of what her little brother is going thru etc. Thank u so much.
YOU are Brave, Courageous and a great teacher to so many. Thank YOU so much! As a therapist, I will share with other therapists. You are so articulate and knowledgeable. You truly helped me understand lots about it what is happening behind the rage.
Thank you so much ♡ Rages are so important for therapists to understand because I've never met a therapist in-person who actually understands them so it means a lot for you to be understanding and share it with other therapists.
I hope you don't mind me saying this: Those audible tics you're brave enough to share with the world? I realize that you have little to no control over them whatsoever, and I can only make wild guesses as to how much they may be bothering you - but maybe it helps you to hear that they do at least sound kind of cute (if anyone were to ask me, at any rate). Even when you threw in an expletive at one point (or at least I think I heard one), I couldn't feel offended even if I tried. Anyway - keep killin' it!
Thank you for your cogent, helpful explanation. It captures important points that I did not entirely understand, even though I have read everything I could get my hands on.
You are indeed a very brave girl to speak so openly about this major challenge that affects you as well, and your comments are very helpful. One scientific comment here, actually an open question: please note that the Fragile Chromosome X syndrome (FRAX) has many common traits with PANS/PANDAS, and some cases may actually be the other... Surprisingly, I do not seem to encounter any literature telling the two apart, and I imagine that the ultimate test is actually genetic. Perhaps someone else has some useful insights here ?
I love You, i am a 36 year old man with Tourette, i was Suicidal my whole life until i had a Dr that was educated at Oxford university, 1st U in the world vs Queen's 286 in the world, no one believes me. The most important thing to me in my life, is just to know I am not alone, I grew up poor, when i tic'ed as a child i was attack and beat up after by the other children, when I feel tic comming on, i feel my fight reflex preparing, as i never could run so flight isn't an option. and I live in FEAR everyday of other humans
I think my child has had this for years now. No psychiatric treatment has helped her. She had strept and EBV around the time she had her first outburst as well has unexplained hives
In a severe case have you heard of dbs .. Im waiting for my kids pandas results but this has been so so devastating that i already seeked out to neurosurgery for dbs
I have heard for DBS for Tourette syndrome and severe OCD but not for PANDAS specifically. PANDAS is usually managed with immunomodulatory treatments such as antibiotics, anti-inflammatories, IVIG, plasmapheresis and natural methods such as eliminating food sensitivities , addressing mold toxicity and using supplements and natural anti-inflammatories such as turmeric can be used in some cases, although I am not a doctor of course, this is just from my own research and personal experience. My mum thought that I would have to get DBS when I was older when she was researching when I was younger, at that time I had debilitating 'OCD, severe tics, rage attacks, oppositional defiance, personality changes etc. Thankfully I don't need DBS anymore as eliminating my food sensitivities made a huge difference. Quite a few people in the PANS / PANDAS and Tourette Syndrome community test positive for IgG mediated food sensitivities, these are often delayed reactions which can occur a few hours or so after consumption, they don't show up in traditional allergy tests as they test IgE (immediate) allergies. My food sensitivities which trigger inflammation in the brain are dairy and food dye (food dye sensitivity). Eliminating these things made a massive difference, and allowed me to come off my anti-psychotic medication which we thought would never happen. The book stop your tics by learning what triggers them as well as natural treatments for tics and Tourette's has information on this in. People respond differently to food sensitivity elimination, for some like me it can make a profound, life-changing difference, for others they may only see a slight change and others may not have any sensitivities, but it could be something worth looking into as you never really know if something helps until you try. Some people look for patterns, do the elimination diet or see a naturopath or environmental physician for help with this. Antibiotics have also helped in my case.
I never tried Advil for my rages, at that time we didn't know I likely had PANS/PANDAS. There isn't a pain component for me, just a complete loss of control of my feelings and actions.
That's a good question 💚 I would say that some of the symptoms can be misinterpreted as sociopathic traits as PANDAS / PANS can cause oppositional defiance which can cause someone to act in a hostile manner, become angry and defensive, act in antisocial ways, disobey authority, argue back, become antagonising etc. I was like that quite a bit when I was younger but thankfully things can change, with the right treatment to decrease brain inflammation people can be back to their kind, loving, respectful selves. 💚
From a PANDAS mom, THANK YOU!! You articulate this so incredibly well. I wish doctors could see this and hear your description. You are helping so many families!!
I haven't even finished watching this and I've had to pause to tell you how thankful I am for this video and how sorry I am this happened to you and your family. Thankyou.
Thank you for sharing this. You articulate this better than most physicians. My son has PANDAS, and I can relate to so many points you’ve made. So many times we disciplined and bribed- to no avail. He is 80% better after two years with a functional doctor treating his gut.
Thank you for being brave to speak out. Some of our kids can't explain what you have. This helps us as parents.
You are such an amazing articulate young woman, thank you for helping our family understand what our son is going through!
Just like your shirt says, you killed it girl keep up the great work
Thanks for sharing - so many providers and family members need this information
My son has been in an out of the hospital all summer. Due to aggression and rage. I am going to look more into this. A lot of what you say in your video when you get angry is just like my son!! Thank you for posting this video.
My child doesn't have Pans/pandas (ruled out by antibiotic regimen) - but does have Tourette's Syndrome and rage attacks at times.
It's very difficult to live with, but we know our child doesn't intend to have rages or meltdowns.
Validation is key, these always occur for us when things are percieved by our child not to be fair, if they have been masking or supressing or are just completely overwhelmed.
Thank you so much for being so brave & sharing how difficult it is.
For fellow parents, I'd urge making your house tic & rage proof as much as you can. Reasonable adjustments go a long way to a happier home.
100% agree, but also be aware that an antibiotic regimen doesn't always rule out PANS - that's the mistake I made. I didn't respond to the first antibiotic given so it was assumed I can't have it, however some people only respond to other interventions like Steroids or IVIG and may have a chronic antibiotic resistant infection so it cannot be fully ruled out by not responding to antibiotics. It is vital as you say to be accommodating and make the house tic and rage proof. More people need to be like you and understand that no one intends to have rages and that they can be triggered by masking/suppression/overwhelm.
It's a terrifying nightmare.... Parents are left alone begging for help from doctors while the infections ravish their child's body and brain...
Thank you for mking this video. My son struggles with rage and other problems as well. I am going to show this video to my daughter bc I feel seeing that u r close in age and hearing ur experience, it will help her understand more of what her little brother is going thru etc. Thank u so much.
YOU are Brave, Courageous and a great teacher to so many. Thank YOU so much! As a therapist, I will share with other therapists. You are so articulate and knowledgeable. You truly helped me understand lots about it what is happening behind the rage.
Thank you so much ♡ Rages are so important for therapists to understand because I've never met a therapist in-person who actually understands them so it means a lot for you to be understanding and share it with other therapists.
I hope you don't mind me saying this:
Those audible tics you're brave enough to share with the world? I realize that you have little to no control over them whatsoever, and I can only make wild guesses as to how much they may be bothering you - but maybe it helps you to hear that they do at least sound kind of cute (if anyone were to ask me, at any rate). Even when you threw in an expletive at one point (or at least I think I heard one), I couldn't feel offended even if I tried.
Anyway - keep killin' it!
Thank you so much for sharing this! You're an amazing young woman.
Thank you for your cogent, helpful explanation. It captures important points that I did not entirely understand, even though I have read everything I could get my hands on.
You are indeed a very brave girl to speak so openly about this major challenge that affects you as well, and your comments are very helpful.
One scientific comment here, actually an open question: please note that the Fragile Chromosome X syndrome (FRAX) has many common traits with PANS/PANDAS, and some cases may actually be the other... Surprisingly, I do not seem to encounter any literature telling the two apart, and I imagine that the ultimate test is actually genetic. Perhaps someone else has some useful insights here ?
I love You, i am a 36 year old man with Tourette, i was Suicidal my whole life until i had a Dr that was educated at Oxford university, 1st U in the world vs Queen's 286 in the world, no one believes me. The most important thing to me in my life, is just to know I am not alone, I grew up poor, when i tic'ed as a child i was attack and beat up after by the other children, when I feel tic comming on, i feel my fight reflex preparing, as i never could run so flight isn't an option. and I live in FEAR everyday of other humans
Oh no that sounds horrible for you, you are an absolute warrior and I hope good things happen for you in life 💜
I think my child has had this for years now. No psychiatric treatment has helped her. She had strept and EBV around the time she had her first outburst as well has unexplained hives
In a severe case have you heard of dbs .. Im waiting for my kids pandas results but this has been so so devastating that i already seeked out to neurosurgery for dbs
I have heard for DBS for Tourette syndrome and severe OCD but not for PANDAS specifically. PANDAS is usually managed with immunomodulatory treatments such as antibiotics, anti-inflammatories, IVIG, plasmapheresis and natural methods such as eliminating food sensitivities , addressing mold toxicity and using supplements and natural anti-inflammatories such as turmeric can be used in some cases, although I am not a doctor of course, this is just from my own research and personal experience.
My mum thought that I would have to get DBS when I was older when she was researching when I was younger, at that time I had debilitating 'OCD, severe tics, rage attacks, oppositional defiance, personality changes etc. Thankfully I don't need DBS anymore as eliminating my food sensitivities made a huge difference. Quite a few people in the PANS / PANDAS and Tourette Syndrome community test positive for IgG mediated food sensitivities, these are often delayed reactions which can occur a few hours or so after consumption, they don't show up in traditional allergy tests as they test IgE (immediate) allergies. My food sensitivities which trigger inflammation in the brain are dairy and food dye (food dye sensitivity). Eliminating these things made a massive difference, and allowed me to come off my anti-psychotic medication which we thought would never happen. The book stop your tics by learning what triggers them as well as natural treatments for tics and Tourette's has information on this in. People respond differently to food sensitivity elimination, for some like me it can make a profound, life-changing difference, for others they may only see a slight change and others may not have any sensitivities, but it could be something worth looking into as you never really know if something helps until you try. Some people look for patterns, do the elimination diet or see a naturopath or environmental physician for help with this. Antibiotics have also helped in my case.
Did Advil help to prevent these rage attacks. Is there a pain component
I never tried Advil for my rages, at that time we didn't know I likely had PANS/PANDAS. There isn't a pain component for me, just a complete loss of control of my feelings and actions.
Can it cause sociopathic like symtoms in a child?
That's a good question 💚 I would say that some of the symptoms can be misinterpreted as sociopathic traits as PANDAS / PANS can cause oppositional defiance which can cause someone to act in a hostile manner, become angry and defensive, act in antisocial ways, disobey authority, argue back, become antagonising etc. I was like that quite a bit when I was younger but thankfully things can change, with the right treatment to decrease brain inflammation people can be back to their kind, loving, respectful selves. 💚
Omg your amazing omg omg omg
Thank you so much!