A Child Who Hasn’t Spoken in 5 Years (A Mysterious Case Doctors Can’t Solve)
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- เผยแพร่เมื่อ 15 ก.ย. 2024
- Easton was reaching the typical benchmarks for a child until he suddenly stopped talking, eating, and sleeping at the age of 4. His parents say that his personality and mannerisms completely changed over the course of a few days. They took him to countless doctors and geneticists, but have never found an answer. Easton is now 9 years old and hasn't spoken in 5 years. His family hopes that someone out there may have an answer to what is happening to their son.
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Easton’s family has created a fundraiser that will be used for medical expenses and their search for answers at bit.ly/Help4Easton . This fundraiser was created by his family and all contributions go directly to them. Also, we are currently experimenting with our captions on this channel. This month, instead of engraining the captions directly into the video, we are inputting accurate human made captions into TH-cam’s captioning system. Just click “CC” to have these captions on the screen. Thank you for your love and support!
Neurological Conditions: Seizure disorders, encephalitis, or other brain inflammations might lead to sudden behavioral and developmental regression. Sometimes these conditions can go unnoticed if the seizures are not easily observable.
Hi Chris love your videos I can be video please ❤❤❤❤😮😮😮😮❤❤ to meet with you
I love having the captions on the video.. they were nicer than the normal kind. I'm sure people that don't need them don't like them though. I think it teaches people to be tolerant. They might not need captions, but someone else does.
I don't like the new caps system. I loved your videos for the caps!!
Hi Chris! I sent you a message on your website regarding putting this family in touch with a genetics team in NYC. Thanks!
Hello! I've forwarded this video to a genetics team at NYU Langone that is doing a study of very rare, undiagnosed diseases. If I hear back, I'll let you know!!
Aw your so sweet! More People like you are needed in this world.
Can I contact them, sorry to interrupt, I'm from Israel..
That’s so cool, I hope they reply!
@@FullTimePatient37 Yeah Netanyahu needs to be studied, he is an animal in a shape of a human.
Thank you. This is exactly why we put our story out, we just want answers.
This is SO hard to watch. Not just because of Easton himself, but seeing the utter despair of his parents. I cant imagine what that must be like. Praying for a solid diagnosis with specific treatment/s.
Yes!
🙏🙏🙏🙏 praying hard for this family. This must be devastating beyond comprehension.
Omg! I was thinking the same. You can see their high cortisol levels and anxiety 😢
How is this not typical childhood dementia? He has all the typical signs/symptoms, and a typical regression. Childhood dementia is incredibly sad and has many causes
Mom and dad look defeated and exhausted 😢 Praying for this family and that they are able to find ways to enjoy life again whether or not Easton shows improvement. I also hope they eventually find some real answers.
The poor parents are really overwhelmed😢 😔 and just look defeated. I hope not only that they find an answer but also a breakthrough because it's impossible for them to keep living like this and they deserve a peaceful life.
mom and dad are two irresponsible piggies
Hi! I’m a licensed US psychologist trained in neuro assessment. I would never diagnose from afar but thought I might toss some info out there to follow up on if it seems relevant.
This sounds like classic CDD, Childhood Disintegrative Disorder. Kids who experience CDD typically meet normal development milestones for the first 2-4 yrs. Children then experience a rapid regression across developmental skills and milestones, often starting first with language.
There’s debate about whether hallucinations are part of the disorder. Kids will often demonstrate behaviors associated with experiencing hallucinations but it is still unclear whether this stems from actual hallucinations (sensory experiences generated internally/within the mind) or regression of sensory processing abilities (inability to accurately process, regulate sensitivity to, organize, and respond to external stimulation), the latter being a component of the disorder in most, if not all, cases.
The most recent version of the DSM tossed CDD under the broad category of Autism Spectrum Disorder. While there are some major commonalities, I tend to disagree with tossing these into the same bucket (DSM-5 was not a great revision for many reasons). CDD has a very different progression, more severe outcomes, is linked with epilepsy, and arguably a different underlying cause despite having neurological structures and symptoms similarly at play. The experiences of families with a child who has CDD is simply just not the same as those with a child who has typical ASD. There are struggles that are truly unique to CDD.
CDD is pretty rare, but we do have experts on this here in the US. I think it would be critical for parents to get their own therapy with a provider who is acquainted with this disorder as well.
@SpecialBooksbySpecialKids
Do you know of any incidents of this occurring in adults?
@@Panda_Biscuits ? This has never happened in adults. It’s a rare developmental disorder
You can see poor dad fighting back tears the entire interview. God bless this family! 🙏🏻
God doesn't seem to be doing much, and praying to Hermes seems just as effective
Yes! I’m usually not an emotional person; however when it comes to discussing Easton’s situation I can’t help my self. I had so many hopes & dreams for that boy when he was born & I feel like it all got taken away with no hope.
Emotions are good, man! You've had a devastating last 5 - 6 years without respite from your grief. Take good care - you now have a multitude of folks who care about you and your whole family. Best to you @@DaveyPhillips
@@DaveyPhillipsSending you and your family loads of love from South Africa 🇿🇦 ❤️. Not getting answers is a soul- sucking way to live.
@@melanytodd2929 thank you for the kind words 🇺🇸🇿🇦
The father looks like he permanently has tears in his eyes. Very sad.
Yes I saw that too :(
😢🙏🏼
He responded to someone elses comment. "Yes! I’m usually not an emotional person; however when it comes to discussing Easton’s situation I can’t help my self. I had so many hopes & dreams for that boy when he was born & I feel like it all got taken away with no hope" I feel for the man.
@@glmorten And yet I felt that they were both doing an incredible job of caring for Easton, with great fortitude and loyalty to their son. How difficult it must be. Not many of us could have done so well. They deserve more support than they are getting, so I pray for them to get the strength they need and the help they need. May their family be blessed. 🤍
god please pray for this young boy easton he
gets help and a proper diagnosis
I could not imagine what it must be like to be Easton right now. One minute, you're speaking, communicating, and living just fine, then in an instant, you are unable to speak, and it changes everything for you. It changes everything you were. You're a different kid. That must be utterly terrifying for him. Not to mention frustrating; you're going around the country to meet with people who you think will be able to help you, and then none of them are able to figure out what's happened to you? I hope this family gets answers somehow.
That sums it up perfectly. We have travelled to Boston Children’s, Mayo Clinic & Cooks Children in Fort Worth. We will go wherever we have to go to get Easton some help/answers.
Is hard I know I haven’t spoken in 2 years .
@@cindywong8168I hope you’ve found ways to communicate in your daily life that work for you. That has to be frustrating especially if people are rude or impatient.
@@DaveyPhillipsThere are a few autistics who experienced regressions featured on TH-cam. I believe Elizabeth Bonker did if I'm remembering correctly? She communicates by spelling now and graduated Valedictorian from Rollins College 2 years ago. There's also Ben on the Autism Superpowers channel. My own son had a regression at 2. He is not able to speak but is learning to read and seems more capable than others would realize by appearances. There are a lot of nonspeaking autistics now who are showing the world they sometimes have rich inner lives and I've learned a lot form them. Jordyn Zimmerman is an interesting case but I don't know whether she had a regression.
@@DaveyPhillipshave hospitals looked into the various lysosomal storage disorders (LSDs) ? There are a lot of them (at least 50 that we know of), but they all generally have similar effects on children, (degenerative, causes aggression, sudden onset, seizures, spinal inflammation, hearing loss)
I knew a young woman with ASD who regressed profoundly after trauma. She had normal development until 2, when she hit her head quite hard on the bottom of the family’s coffee table. She began to lose skills within weeks, and was diagnosed ASD at 4. She also developed petit mal seizures. I worked with her in her early 20s, and she had recovered some speech. Easton reminds me so much of her, right down to his gait. Her behaviour and development mirrored Easton’s at this age.
I wonder how many cases of autism are really undiagnosed/unnoticed head trauma. Or maybe there's underlying conditions in some kids that causes a stronger reaction to head injuries.
@@Jjnnssiinngg especially if their soft spot haven’t healed or if the injury happens without the parents knowledge especially with boys you know they’re always bumping around
Incredible parents. They need help. Are there volunteers who can take shifts with Easton so the parents can get breaks? This is not sustainable for the best parents. My heart goes out to this family.
I’ve seen the dad replying in the comments so I’ll delete this response if he does, as I have no right to speak for them. However, watching this video, it’s apparent that Easton can be a danger to himself and others. I don’t think most parents would be comfortable leaving their child with somebody knowing they could get hurt, or that Easton could hurt himself/get hurt. It’s not easy to hand your kids over to somebody, let alone a kid who needs constant attention and support.
I'm on the autism spectrum, I was mild autistic and outgoing / eccentric till 13-14 years old, then I withdrew socially, and my autism got far worse. I also developed temporal lobe epilepsy. During epileptic attacks, that lasted 20 minutes, my vision turned to black and white (no colour) and nothing felt real. I also turned into a night owl, I did not sleep until 3-4 am, and sometimes skipped a night's sleep entirely. My sleep pattern was more typical of someone who is blind, called Free Running sleep pattern. My obsessions got more focused, I was obsessed with mineral collecting and astronomy, but these got more obsessive. Autism can be, for some, highly variable over time, with highly varying severity, regression and remission over childhood to adolescence and adulthood.
I am doing very well now, I'm in my 50s, I am a data scientist and I have a PhD. I think there is possibility he could improve in adulthood, if the cause he's similar to me. (My nephew has autism, and several children of my cousins are also diagnosed with autism, so there is likely a genetic cause). My nephew was genetically tested, they found a genetic abnormality, but it is not known to be associated with autism. Also, melatonin helps him (and me) sleep.
Yes! My pediatrician began my daughter on it finally when she was 4. By 8 she was finally assessed for ASD. Only took 6 yrs on wait list with good PPO health insurance. She was then DX with anxiety and ADHD & began meds for those. Then on waitlist again by 11 and DX just before her 16th birthday with autism for sure level 1. I m certain I am also autistic. Age 46. Her and I lived in a Bubble though. As a stay at home mom to girls ages 5, 10 & 15 when she was born. She barely survived 3 days of prek. She cried hysterically the entire time even though I was on site. After that the director whom I knew personally at the church asked what I wanted to do? I asked her advice. She sd in 20 yrs running the school grades pre K to 8th she had never seen such a severe case of anxiety and recommended autism testing which we were on wait list for. So I just began homeschooling her. She had a custom written curriculum by me u til 10th grade when she agreed to transfer to online learning. She is in her final year and has maintained straight A’s. She appears normal but struggles to remember to eat, issues with learning new tasks like showering herself, laundry, basic food prep. Her ADHD & anxiety are severe. She is a very picky eater. She does online therapy often. She likes talking to peers online but has never had a real life friend. She does not really seem to care at all either. Although she likes her sisters & cousin and was always close with them. She has a gifted IQ. Genetically she has some mutations that match with autism. (She was being treated for high glycine levels as I asked Dr to test amino acids since she is such a poor eater. That one came up quite high. She just submitted a retest swab and we were told every year more mutations are being found for things. The high glycine could cause brain damage though.
I got genetic testing done that found a specific gene that is theorized to correlate with autistic "hyper-systemization" independent of significant issues with socialization and reading social queues. I also didn't attend pre- k because I was apparently pretty much non- verbal, only if I really felt like I had to speak.
I couldn't get enrolled in regular pre-k. I'm 35 now and speak two languages fluently, I even contract as an interpreter and speak another language pretty okay. I'm also a freelance artist and am extremely interested in learning about biology, genetics, quantum physics, anthropology, and social sciences (of course, I'm not a master or have degrees in any of those things, lol). I often listen to lectures and podcasts about those topics in the background while I work on commissioned paintings.
I don't say that to try and sound like some kind of super smart cookie. The reason I am genuinely so fascinated by all of those things is because my brain has always been steered towards seeing the connections and patterns shared among many different sciences and systems, but, though I can socialize fine when I need to, I struggle with being super overwhelmed by too many people around me or busy public spaces. I'm not exactly thriving though.
@@CestLePandawell you certainly sound like an interesting person I would enjoy talking to. I’m not being “nice”, it’s just true.
Thank you for sharing your story and how you have overcome your challenges with autism!!
@@warriormamma8098 I had the same issue once I finally started kindergarten. I later had it happen again when I was 11, but it was also clearly due to the kind of awful environment and administration at my new middle school. I was heavily targeted by bullies and was absolutely oblivious as to when people approached me with the intention of humiliating me.
In other words, though the bullying was a clear factor, the fact that I was in a way being ostracized for being myself, independent of how other kids thought I needed to behave in order to not be picked on, quickly became a fact of life in school and society in general as I got older and it really messed me up for a long time.
This is a cry for help. I sincerely hope the exposure from the interview will bring answers and solutions this family. Easton and his parents deserve to live life to the fullest. 😢
Hi! I am the mom of a little boy who also had seizures and has autism and a developmental delay. He does not speak at age 8. We have very little respite except in emergency situations. Hope you get more respite you deserve some rest. Stay strong ❤
I know every day is hard and you are also able to get more help and support.
After hearing his parents talk, it really makes me think that he suffered some form of damage to his brain to his temporal frontal lobe (would explain the change in personality) alongside nearby regions. Perhaps some infection passed the brain blood barrier? We know strep can do that despite being an incredibly common bacteria.
Wish folks wouldn't just blame vaccines smh, smh, this family needs actual support and not conspiracies.
I know right
Do you have proof vaccines didnt cause it?
Temporal lobe stroke?
I was thinking the same thing! damage to his frontal (and maybe temporal lobe) would explain the loss of speech, change in personality, and the aggression (lack of inhibition), though i dont know if that could be related to the seizures or not. its pretty sad either way, if its damage to the brain there isnt really anything they could do
that was my thought too. I feel like I've heard about something like this before, I think it was some virus that caused like a major brain infection/inflammation. I think if he had had a stroke, the doctors could see that on scans.
As a health scientist with a particular interest in neurology, & having grown up & worked with people of all ages with autism, I agree with the autism diagnosis. I also agree with the comment that mentioned the possibility of trauma. Trauma for someone on the autism spectrum can have a much more profound effect. It would also go some way to explaining the sleep issues. I would recommend seeking help from a play therapist. Even when a child doesn't engage with them, a good play therapist can pick up information from watching them play. It isn't a miracle solution, but it is something that could give you one more piece of the puzzle in working out how best to help Easton. I'm also wondering about the possibility of whether or not you would be able to come to the UK. Getting in touch with a neurologist at Great Ormond Street Hospital or Birmingham Children's Hospital may give you more information. If that's a possibility, I could possibly get in touch with them & get you the name of a neurologist to contact. Although, I totally understand if that's not an option for you.
I was thinking it sounds like Rhett syndrome. My daughter has autism and a rare genetic disorder. That’s never been seen before. She was diagnosed through Laurie Children’s Hospital in Chicago. She’s the first with the genetic misspelling . I wonder if this young man has been doing geneticist a lot of his symptoms sounds similar to my daughters. I wonder if he has a misspelling in his DNA also
@@Milaperadotti That's possible. But it could also be another first genetic mutation. Impossible to say at this point.
That's so incredibly kind of you. God bless you ❤️
As a retired Speech Language Pathologist, my heart aches for this wonderful family.
Thank you for your years of serving children. I'm retired from working in special education and loved our speech pathologists.☺️💜
As a construction worker, me too
As a former chocolate factory assistant, me too
As both a former and current human, me too!
I’m a former AAC SLP, and it’s got to be so rough that he not only regressed, but hasn’t progressed since then. It’s a really unusual pattern.
I have read that divorce is extremely high for couples who have medically fragile children, unexplained illnesses, serious mental issues, etc., so it's commendable that they are still together. I wish them joy and success in their future.
i was literally thinking that as i read your comment
It seems nearly unbelievable that two prestigious hospitals could not offer the family even an inkling of what their son’s condition might be. I’m hoping desperately that NYU Langone gets back to Chris and agrees to help this family. When Dad started to cry, my heart broke for him. It’s naive to believe every problem has a solution, but I do believe in the power of Chris’s channel. Surely someone knows someone trained in the care of children like this little boy and could give of their time to relieve the family to go out with their other kids for some enjoyment. Or someone knows a child who is suffering in a similar manner. I’m sending the family positive thoughts that this video brings some of the answers they want and need. Thank you so very much Chris. 🌹
Excellent parents, these two. I think it’s reasonable that with more time and research Easton’s condition will improve, and when he speaks again I’m sure he will have many positive things to say about his loving, supportive family!
Thank you for the kind words.
Let's hope so
Will hope & believe for that to happen 🙏 Easton and his family deserves the best of health and happiness 😊
I’d explore:
- genetic testing for any possible childhood dementia
- check for any infection, I know you mentioned in a comment inflammation in his spinal tap so that could be a sequelae from brain infection or other infection that might have also affected the brain
- check for other causes of infection such as autoimmune disease as other people have mentioned
- check with a psychiatrist whether the autism diagnosis still upholds or if it could be just something else, and check what can be attributed to autism and what can’t (to look for a compatible diagnosis that explains the symptoms that can’t be attributed to autism)
- check any medication he was taking at the beginning of the regression and/or any medication he was taking consistently and/or in high dosages, check every study that looked at the use in children under 4 of that specific medication
That’s mostly all I can think of, sending much love and the best of luck to find a diagnosis❤️
Some of his symptoms remind me of the long-term effects of lead poisoning.
Infection of some kind is the first I thought 😢
The symptoms both before and after are very consistent with autism. Epilepsy is also very often co-morbid with autism
@@powderandpaint14 yes I would explore autism spectrum disorder and epilepsy. His difficulties in public settings are very similar to those who have low level autism spectrum disorder.
i agree, also a child psychologist or therapist, mot a talk therapist of course but like an art or play therapist specializing in kids with disabilities or trauma/mental illness. it could be a “flare up” (i don’t know what word to use) or worsening of autism symptoms due to emotional trauma the parents are unaware of, or some sort of mutism or regression of communication/social/executive skills as a trauma response. although the epilepsy makes things more suspicious as a true medical condition, i just think trauma is also worth looking into as epilepsy has some links to autism, trauma sometimes has a more profound affect on people with autism, so maybe it could be a case of multiple factors coming together. wouldn’t have been my first guess due to the coincidental timing but st this point it’s so mysterious, i wonder if it truly could be just because not one specific thing is causing it but multiple factors. there’s a lot we don’t know about how trauma affects the brain and body especially with autism or other neurodivergent conditions involved.
I can see it and I feel it, you never have a break. It’s overwhelming but it’s your normal. I feel for your other children and Easton, I feel for you, mom and dad. It’s not fair. I’m praying for a breakthrough. I’m praying for comfort. Praying for your health. ♥️
I can’t imagine how difficult it is for you guys. I used to cry on Back to School night seeing all the kids work displayed on the board compared to my kid who couldn’t write and that’s nothing compared to what you deal with.
It has been very hard to experience all of the 'could have been' s throughout the years with my son. Many of us 'get it' and understand what you are feeling; it is a kind of mourning, isn't it.
This sounds so difficult for the whole family. I hope they find peace and a support group
I wonder if something traumatic happened? Since he already has autism it would make him retreat further. Hope he gets more peace and the parents get more peace over time
Exactly.
Nothing that we know of. He’s had plenty of MRI’s, EEG’s. Only thing that raised any concerns were his spinal tap, which showed inflammation markers.
The seizures are traumatic, i have suspicion it was the seizures. Being angry and inconsolable is a pattern ive seen in brain damaged individuals too. But the reason he stopped talking and eating, etc. is still a mystery
@@DaveyPhillips I've seen some documentaries where kids have a similar condition due to an underlying infection. I'll have to look it up, but maybe it's strep...but it's hidden somehow. I mean, there were profound changes in the children, just like you're describing. Addressing the latent infection was the ticket.
Whatever it is mimics dementia more than psychological problems. Kind of rude of you to imply something so traumatic could have happened to this kid to do THIS to him. Ptsd doesn't do this
You can just see that he understands! These parents are warriors ❤
I hope this couple is able to get some respite, something. They are so deserving.❤❤❤
A lot of people with autism do regress and can completely lose speech and the ability to feed themselves and a lot of other stuff, but I wonder if he could also have Dravet Syndrome.. I’ve been friends with someone for years who has a younger brother who has a diagnoses of both ASD and Dravets, and it causes him to have seizures which have left him losing a lot of things like speach, ability to feed himself, he was potty trained but regressed and is now 12 and back in diapers, his personality has also drastically changed from his seizures. It’s affected him in lots of ways, it also has some similar traits to autism like stimming and food aversions etc
You can still see the love Easton has for his parents - it’s sweet to see him continuously seeking comfort from his mom by sitting in her lap 😭♥️
Explore PANS/Autoimmune Encephalitis
That’s what I thought tio
YES, I was going to post that if that hasn't been ruled out!
I always thought that was just a disorder where kids out of nowhere start lashing out all the time but they can still talk? I guess there’s different kinds.
@@JoeDFWAviation it’s caused by strep throat & the main symptom is personality change & OCD I think
Yes, this! A neighbor's son had this happen, she wrote a book, "what happened to my child, a mother journey..." she had to fight for a diagnosis.
mom and dad need a break. Someone needs to give them a vacation just for them two for atleast a couple of days!! They look sooo tired.
The child probably has very aggressive reaction when someone other than their parents is present so that is impossible. That I think is the most frustrating thing about this whole situation, you can never not be there. Raising a child is really difficult and im sure that before watching SBSK id never though that those situations existed and can be your life as a parent.
My brother had similar behaviors, and our family had a very hard time getting respite care. Those parents are probably trying to find respite care, but the system is not designed for these situations, so families like this fall through the cracks.
It's so sad to say that you are so right..
Didn't think about that. Good point.
You realize they probably can’t do that
My heart breaks for this family and for Easton. I am a special Ed teacher. This must be so frustrating.
Frustrating is the term that I use the most when describing our journey.
I have much empathy and much in common with this family. My son (27) was dxed with autism at 2. He had been developing typically then it changed dramatically over night. He was aggressive - with himself mostly, agitated, couldn't handle being around people, etc. He started having grand mal seizures as a teen. My life is devoted to him, his safety and wellbeing. It's hard work, and it has very little value in the eyes of many, unfortunately. His epilepsy is intractable, so there's not a fix; it's taking things one day at a time and he has really mellowed with time and developed into a fun, sweet dude! I wish this family the best!
Your devotion, love, and respect for your son has “very little value in the eyes of many”. That cuts. If your feelings and effort have no value as some people are indicating, then your son has no value to them either…in their ignorance. It is their huge incredible loss. We often worship our 60 minute heroes and ignore our 24/7 heroes. You and your son live it and breathe it every moment. He needs…and you stand up. You give every ounce of your knowledge, experience, stamina, and love to make his life the best that you can. You are both my heroes!
My daughter had a similar experience around 4 yrs old, developed seizures and kept falling down, slowed learning and communication. Had something to do with lack of oxygen during c section birth
@@BlueAlien2 thank you! I think it is their loss too. It is a privilege to know someone like my son. Honestly. He’s the real deal.
Have you tried the ketogenic diet??? They resort to it when seizures that are not well controlled with medication.
I wish you the best days yet to come!
Do they have a local respite provider? May be worth looking into as some organizations exist to provide specialized care so families can have a few hours to themselves. Can see how much care they both have for their son but I'm sure they'd also like a break at times ❤
I wonder if he has been assessed for childhood degenerative disorder (CDD) a rare form of late on set of autism that causes regression in the 4 to 10 year old children who never get back most of the skills they lose.
Either that or severe autism.
Also, I thought it was between ages 2-10.
I think so too. I've worked with severely autistic children for a number of years and Heller's syndrome (CDD) was the first thing I thought of when watching.
Sounds like it
Late onset autism isn't a thing - either you are or arent from birth - granted in this case it seems to affect specifically autistic kids. Autism is genetic and fully systemic, in addition to being neurodevelopmental, so autistic folk are more likely to have a very wide array of comorbidities like epilepsy.
@@schmalice666 actually it’s not that simple, autism isn’t entirely genetic and there isn’t one coherent cause of it since environmental factors can also affect it. Correct it isn’t typically “late onset autism” but more of the time in which the symptoms become apparent Later than TYPICAL hence it’s called Atypical autism (CDD-PNOS.) that’s why it’s referred to it that way. Furthermore Autism is a spectrum for a reason,every child is different and so is the severity. From what the video looks like it sounds like CDD. But we can’t say for sure, it could be CDD co-morbid with epilepsy like you said Either way, hope the parents have an Answer soon.
I wish him and his parents the best
I am commenting so that hopefully more people and families can see this episode. There has to be a way to help Easton and his Mom and Dad.
This is exactly why we got out of our comfort zone & did this interview, just to get help finding answers. Thank you so much
I just wanted to hug the Dad the whole time. His emotions are so close to the surface. ❤
“We basically feel like we’re on am island by ourselves…and it’s very lonely”…oh how I wish I could say I never identified with this. Our daughter changed overnight at 3 when she got PANS/PANDAS. It was YEARS of looking for answers while being trapped in our home. I can see that some other people have suggested PANS and I feel sure you’ve looked at that, but l wanted to mention in case. I am praying that this video brings you closer to an answer.
I also want to mention that by the time we saw a neurologist at Dartmouth, her bloodwork wasn’t indicating an active infection. I pushed for a course of antibiotics that I found in a parent support group (I bet there’s much more info now-this was 5+ years ago) and that’s when we finally beat it and every infection didn’t seem like an actual possession was taking place. I just thought I’d add that since we wouldn’t have been prescribed anything.
My heart goes to this parents, I hope they can find ways to get more help and hopefully new therapies for Easton. Seeing dad crying and trying to hold back his tears broke my heart. It also breaks my heart to hear mom talking about when Easton becomes aggressive and it's hard to manage it. I know it's hard to keep your hope high.
You're doing your best and the best is what Easton deserves, you're doing so good.
My best wishes for your family. 🧡
The parents need down time!!!! They do seem like angels. My heart goes out to you two, Easton and his siblings. I'm wondering whether if the parents are taught to give an injection (maybe they already can) when really necessary it can help to calm down a situation. I'm really hoping that things will improve.
Yep they’re crying out for respite help. Having a kid with high needs shouldn’t mean you never go out to eat or have time for yourself. I wonder if there is a community of other parents that they could connect to, even though Easton has a different condition. They seem isolated and that must be painful.
I hope they can get some form of support 💕
They need some kind of respite, ppl crack at some point and I feel like they are at the point now
This is extremely moving. You are very strong parents, and your son is very touching. My daughter lost several of her abilities at 3 yo quite suddenly (not that much but still pretty hard to live), and no doctor found the reason why. No autism, no cerebral damage visible, only a bad sleeping apnea syndrom. We started a gluten free/ lactose free diet. 3 days after the lactose free diet, she started to say small sentences... We were very moved. I did not see any difference with the gluten free diet but we keep on doing it. Then we started to apply a photobiomodulation headset for 30 seconds per day, and it was astonishing, I did not expect it. We live in France, so I don't know if you can try it in the US. First we rented it for a month (200€), then we decided to buy it (1100€). And just an idea, what about trying the keto diet? I have heard it helps for the severe cases of epilepsy when nothing helped. I know it is hard though and that your son have issues eating... I sincerely and strongly wish you all the best for the future!
Can you please say more about the photobiomodulation headset? Sending your daughter and family the best wishes!
I was in speech therapy for almost a year.. it didn't help a single bit.. I still use my phone to do text to speech.. everything in rehabilitation did me nothing.. but I'm an Adult ..had a time of no symptoms so I lived a while..
But Eastons..just breaks my heart 😢 I want to hug his parents very much.. I hope your future holds some light for you 🙏🏼
I am very curious:
Do you feel why you are not able to speak? It's hard to imagine as a speaking person.
Has it been found out why?
I wish you all the best getting some progress. You should try different psychotherapists and coaches! Hope one day you crush that barrier
@@MiaMizunoI have very big challenges in speaking, I have general Dystonia, and part of it is dysohonia, so I can speak normal shortly, other times very strained (that's the norm mostly) and I go mute with multiple triggers like cold smell sickness or being very tired or in pain, it affects my over all spasticity and hence going mute..
I tried multiple speech therapists .. it's useless..
@@FullTimePatient37 ah, yes, I get the big picture and I get that it must be indeed hard! Thank you for explaining!
The parents seem like really caring and empathetic people.
Hats down to them! They show their beautiful son so much unconditional love as hard as it seems it could be!
Hi Easton! I want you to know that we think you're awesome, and we wish all the happiness for you and your family. You matter so much and you have value in this world. ❤
My child regressed somewhat like this and has Batten Disease CLN6. I pray Easton is already negative for that. Hes my daughter's age too. His sustained walking ability is the main difference between him and the way my daughter is. Praying for this family. I know how tired you are. I know how sad you are. I know how it feels to have your child be a shell of their old self. Sending love.
You are the most amazing , kind and strong parents. You have hearts of gold. Sending courage and hope.
How awful for the rest of the family, it’s not just Easton who changed, all his siblings lost their childhood too.
Yes, it has not been easy for any of his siblings. They are all great kids & the older 3 kids are very understanding of Easton’s situation & very protective of their little brother. My other two children 11 & 7 don’t quite understand fully the situation. Those two lost the most time from mom & I because of how much we have to tend to Easton’s needs.
Vaccs?@@DaveyPhillips
@@DaveyPhillipsthank you for sharing your family’s story
@@DaveyPhillips you’re both doing an amazing job. Most parents without the challenges your family faces still struggle to distribute their time and energy fairly between siblings of different ages. Honestly, be proud of yourselves, you’re doing brilliantly
@@DaveyPhillips Did you test for childhood dementia?
My heart goes out to Easton and the parents and other siblings…you all are so strong and so patient, although you never asked for or expected this situation. Wonderful empathy and support from you as interviewer-kudos! 💛 I’m sure no one could ever fully understand how you feel, but some people can understand parts of feeling different or wondering what has happened to their child. If there’s any way to decrease some of the sense of caring if others stare or what others think (which I know is natural) it seems it might benefit you and your family. You didn’t do anything wrong and cannot help his issues or behavior. So no matter what anyone thinks, Easton is a beloved child and you are fantastic parents. 🙏🏾☮️💪🏽
Special Books by Special Kids, amazing content dude
This looks so hard on parents. Not even being able to get out as a family.
This reminded me a lot of my brother. He had autism and partial seizures. He regressed with very similar behaviors when he was 13. Despite going to a ton of specialists, my family never got an answer for the regression and personality changes. Thanks for bringing awareness to this kind of disability.
I have a similar situation so I know exactly what they are going through. It not only affects the child which is tragic, but it affects the whole family. It changes you as a parent. it changes how siblings interact. It changes how you interact with extended family or neighbors. You live in a world that NOBODY can understand fully. May God bless your family and give you the peace and answers that you need.
Thank you. Yes you summed it up perfectly, that is exactly how we feel.
@@DaveyPhillips Well, I commend you for all of your effort. Knowing what goes into this, I already know you are good people. It takes patience on a level that most people can't comprehend. You grow different instincts and I often say, you now have more than the 6 senses as the parent. A super power in a way. I'm rooting for you guys and I hope, with time things get easier.
Similar situation here also. We are TIRED… physically, emotionally, mentally… I feel like I am just existing at this point. I am a caregiver until my body can no longer handle it anymore. I wouldn’t wish this on any family and for all of us that are going through it- huge hugs and embrace to them, you are my people ❤
@@AmandaLeeRex this is why we did this video, because what you just said I felt it in every fiber of my being. No one around us gets it & honestly I don’t want them to & I would never wish this upon anyone. Thank you for your kindness & I wish you nothing but the absolute best.
@@AmandaLeeRex This was a major realization for me and my wife as well. When we were younger you'd see a child with special needs and feel for him /her. When I see one now, I think of his/her entire family and feel sorry. It takes a massive effort. It changes you drastically. It's also something you cannot understand unless you're living it. People mean well, but they cannot fully support you most of the time.
The despair in the parents eyes is heartbreaking honestly, seeing your own child acting like a complete opposite version of themselves must give a painful sense of grief.
I swear I heard him say "dada" at 0:32
Yes! Dada is the one word that he has never lost & he knows that I am dada. 😍
Yes! I heard it too
@@DaveyPhillips Do you think it was a Covid infection that possibly caused all of this?
@@DaveyPhillipsit could be sanifilipo syndrome you should look into it
Yes
I personally would recommend taking Easton to Children’s Hospital of Pittsburgh of UPMC in Pittsburgh, PA because they have a neurologist who specializes with leukodystrophy!!!!!!! Just hearing about the symptoms that Easton has been experiencing, I’m wondering if he has something called Juvenile Metachromatic Leukodystrophy Disorder!!!!!!! The reason why I’m asking about it is because I did some research about his symptoms and people who are diagnosed with Juvenile Metachromatic Leukodystrophy Disorder usually show symptoms like Trouble following directions, New problems with speech, Problems with behavior, Loss of muscle tone, Trouble with balance, coordination, and walking, etc. Maybe the specialists in Pittsburgh can help Easton get the correct diagnosis and help him thrive!!!!!!
I've heard from a number of ppl with serious illnesses, that the period of time of not knowing what it is was the hardest - even harder than getting the tough diagnosis. I hope they get to feel the relief of having an explanation and a name for it sometime soon.
Praying for your family, I can't imagine what you are all going through! It's clear though that you are loving parents, it's so lovely that Easton keeps sitting on mum's lap - he wouldn't do that of he didn't feel safe and secure with you. You are doing an amazing job. Praying you get answers and support for some respite too.
Greetings
Reminds me of a patient I had. PANS/PANDAS, Lyme (including chronic Lyme) which the patient also had, COVID. I'm in DFW. The scary thing I've learned from my own medical journey is just how many answers we don't have, or what happebs when we run out of answers. Nobody knows everything including Mayo, so I don't want to assume they've looked for these or even seen these this before. I saw a similar child's story which was Lyme. She was maybe 9 and had lost walking and speech before it was appropriately diagnosed. So many doctors assume Lyme isn't in their area or will have had a rash before neurological symptoms but many do not.
yes, I also thought of PANS/PANDAS. I don't know how much having that diagnosis would help, but sometimes just knowing a bit more can bring comfort and hope.
Mold too
My first thought was neuro complications from Lyme disease as well
IDK. But this doesn’t really sound like PANDAS to me. The level of intellectual regression is far beyond what would be expected and there’s a lack of OCD sx and typical motor changes/tics, etc. Just a thought.
Heartbreaking to see that mom and dad had never even thought about some of the questions asked. Hoping for peace and comfort for you and your family.
They look so tired, I get it. I'm going through the same thing right now with my sister. Sometimes you have thoughts about abandoning them when it gets so hard. I'm a shell of who I used to be and I'm so tired. I wish someone would say its okay to just run away. I'm so tired
Please look into Phelan McDermid syndrome, Easton has all the hallmarks and facial features that children with this syndrome have, minor dymorphic . It’s a gene mutation of 22q13 caused by the deletions or rearrangement on the q terminal end of chromosome 22. These kids often regress in mid childhood and Easton has all the symptoms especially the facial features which is what stood out to me. Often it’s mistaken for autism but there is big difference.
You are not alone. My daughter lives a very similar experience. She is nonverbal and g-tube fed. She never had normal language, she was always behind, but she has lost the desire to do other things like swing or interact. Recently she became very aggressive and I have had to get some medications for her aggression. I have also tweaked her food and exercise and it seems to help. Reach out if you want. My daughter is 15 now.
Hopefully someone watching this has some answers for the family ❤
That’s what I am hoping too.
I'm hoping as well. He doesn't seem far off from myself as a child.
Mom and dad, if I were to see you in public and you were struggling with Easton is it appropriate to ask if I can help? For example, if you have your hands full with a shopping cart could I offer to push the cart or is that overstepping? I’m a natural helper. I have done this with parents of a child who needs extra attention in that moment or an elderly person. Is it truly better to just say “hi”?
I have a non verbal autistic child - I’d absolutely melt with joy if someone saw us in public and offered a hand. We mostly get ignored like we don’t exist.
Not all families will feel the same as me, though
That woukd be absolutely amazing. Anytime anyone steps in to help in any way possible I’m so thankful & appreciative. For us the smallest things go the longest way.
I was thinking about this as well. I do ask people if they need help, most say no but every once in a while, they really do need help and accept my offer.
My son was diagnosed With ADD high spectrum & he’ll be so kind & out of nowhere he’ll get triggered & he’ll lash out call me a mean mama & tell me hurtful things will pinch me & kick … it’s very sad & gets into everything & takes my things apart unscrews anything he can & he is a Fan fanatic & will want to watch fan videos on TH-cam. Extremely intelligent but when he doesn’t get his way he becomes very violent & he’s only 6. Idk if anyone out there is going thru something similar but my heart broke when they said they feel like they’re on an island & alone that us, we can’t go anywhere bcoz anything can trigger our son & I’m his shadow to make sure he’s safe. He’s very sweet when he wants to. I can honestly say it’s overwhelming & not easy & zero downtime only when he’s asleep. 🥺🙏🏼🙏🏼🙏🏼
Have you heard of PDA? It’s a profile of autism that presents very much in this way. PDA society is a great place to start for info. Changing how we parent and better understanding our sons nervous system made a huuuuuge difference
Your son sounds a lot like me. It does get better over time, especially with the right resources. Learn whatever you can, especially from self advocates (this channel is a good place to start!). Also, please feel free to reach out if you ever want to. Sending you both love.
Thanks for the upload! I'm sure he understands and can communicate in other ways.
Woah I finally found someone who has a similar case to my brother, my little brother was a normal kid until he turned 3 years old and he suddenly stopped speaking, communicating, and even realizing anything. My parents went to get a diagnosis and they were told he was autistic but as he grew up and as we started checking out new doctors we were told that he was not autistic he just had EXTREMELY high levels of ADHD. My brother's case is rare no doctor could ever figure out what was up with him, it's like all of a sudden he just turned into a completely new person who can't speak and quite literally can't think or do anything without our help and needs constant monitoring 24/7.
We’ve also tried a TON of medications like Ritalin and a whole lot of other medications but unfortunately they've done absolutely nothing but mess up my little brother's health.
I just finished watching this and am moved to tears on the love you can feel through these parents words.
I too am commenting to get some more traction to this episode.
Not trying to take away from what you all are going through, but I suffered a massive stroke at 45, 5 years ago yesterday and am Partially Paralyzed.
I was the epitome of health, never drank never smoked, my blood pressure is 120/60 and I was 122 pounds. They have no idea why I had a stroke, I tried to reach out to anybody who would listen and it’s so frustrating because I’m sure as this family is, we’re not looking for perfection. We just want to symbolism of how things used to be.
Sending all the positivity I have to this beautiful family. I’m praying that you get answers soon.
I hope that his parents can find a community of support and I hope this video is the catalyst to finding them some connections. Sending love to Euston and his entire family.❤
Looks like he had some kind of meningo/encephalitis at some point with subsecuent neurological sequelae
Having 6 siblings myself that are all "ok" makes my heart break watching this. Im almost in tears over this wonderful family. Praying for a cure God bless them
My words can’t convey my empathy and compassion for all of you. This is so hard on every member of your family. Sending you lots of sincere cyber hugs and LOVE. Remember to LAUGH as often as possible. Ask your other children every day, “ Did you have a good laugh today?” Laughing releases stress. It’s a good habit and focus for any family. Again, my love to all of you.
Just watched you three and wanted to reach out and say what amazing parents you are. Just staying together as a unit is something to be celebrated, as a couple you are so inspiring! My son 18 years ago was trapped in our car underwater at 10 months old for over 5 minutes as I had to also save his older sister, he went from talking to absolute silence for 14 months. I can still remember that feeling of helplessness, my heart and prayers go out to you for enduring this together. I hope this video helps find you answers for Easton and connects you to someone who can help!! Paige
Wonderful parents. I hope they get some answers and help
He reminds me so so much of my nextdoor neighbours son. Hes also mute and sounds exactly the same. Hes 6. We live in England. They have just been told a typical autism but they feel they are missing answers too.
Praying for this little kid!! We love him and proud of his family for taking such goo do care of him! He’s really strong!
It's heartbreaking to see those parents searching for answers. I hope they are finally able to know what is the disorder that is affecting their child.
I was tearing up along with the dad the whole time. Bless your hearts, you're both such brave parents and Easton is a beautiful boy, like a little sun. I hope you'll manage to get an official diagnosis for him and get out of that lonely island. Your interview DOES leave an impact, and I'll pray this video gets forwarded to as many specialists as possible.
My heart aches at the sheer exhaustion on their faces.
Love to you all. ❤
Thanks to this beautiful family for sharing a bit of their story. As a special education teacher, I have worked with a handful of kids over the years that had very rare diagnoses or were unable to be diagnosed. Hopefully, your story will get attention that leads to some answers. Sending you loving kindness and I’d love to see an update in the future.
My heart is so broken for this family, these parents are incredible. 🙏💙
I pray they find relief 🙏🏾. They looked so tired and worn out absolutely worried about him. They did not take their eyes off of him . That has to be so tough , just constantly worried .
Sometimes these odd changes come from typical infections that people get daily but are not diagnosed. If the family knew the cause it would at least help them to know what it is that caused their sons sudden change in personality.
We were told that it should’ve showed up in his bloodwork.
I mentioned this in my other longer comment, but my daughters Pans/pandas didn’t show up on bloodwork when we finally saw a neurologist at Dartmouth. I insisted we do prophylactic antibiotics for a few months and that’s when we turned the corner. I had a chart that I brought in showing how her behavior regression and then stabilization was related to infections (ear, strep). She would be completely out of control, we’d realize she must have an infection, get abx, and then get a reprieve for a bit. So I was convinced it was PANS based on this. Has he ever taken antibiotics and had a reprieve from symptoms? I hope I’m not annoying you with my responses, I figure any comment might boost the video to people who know more!
@@DaveyPhillipstested for heavy metals? ♡
@@annemorph yep I've heard of really odd medical conditions that have been brought on by things like strep and staphylococcus i infections. It's amazing how some people just become ill and within just over a couple of days of antibiotics they are feeling so much better and at the end Nd of the course of antibiotics they are cured yet in other people these infections can cause horrendous debilitating illnesses. I knew a couple with2young children who were both born healthy and reached their milestones on time and both had their childhood innocularions. The eldest daughter had them with no adverse side effects and so they had the youngest daughter inoculated and they said within a day they noticed changes and this child went from a normal average baby to a baby needing24hour care and became mentally and physically disabled and unable to do anything that she could previously do. Her parents, particularly her father doted on her but she sadly passed away aged4. Her parents put it down to the first round of the MMR inoculationshe had.
@@annemorph he’s been on a weeks worth of antibiotics but we didn’t see any difference. You are not annoying me at all, we love the outpouring of help & support & positivity that this video has brought. We are so thankful to everyone that has commented.
As a mother of a child with a rare disease, my son has Juvenile Batten Disease, I can only empathise with the parents distress, confusion and journey in searching for answers, I remember those years. Keep searching, get 2nd, 3rd, even 4th opinions, and always always follow your gut instinct as a parent. I was told by both general practitioners and top privately paid for specialists 'he's fine, he's healthy, this is just behavioural, he'll grow out of it'. I refused to accept each of those opinions, and with strong perseverance, I finally found the professor who would indeed diagnose my son with the correct diagnosis. I know its hard, its so damn hard, but keep doing what you're doing with raising awareness, you will eventually get some answers.
The look on their faces at 9:04… they’re exhausted😢
It has been quite the journey. As parents when you have kids you always have hopes & dreams for them. With Easton we just want to find answers. It really makes you put things in a whole different perspective.
first comment. love your channel so much. thank you for all you do for disabled people like myself
Same me too thank you
I believe I heard of a case similar to this in which the child recovered after it was discovered they could not process a specific amino acid, and once that amino acid was excluded from their diet, the appearance of brain damage and loss of function was reversed. Wish I could remember more about it..
There is a movie called Lorenzo's Oil. Is that what you are thinking about?
@Catlily5 Haven't seen that. Not sure if it is related. This was just a mother interviewed for a documentary, news story, or podcast, about the "mysterious affliction" that her child had, and then by chance, they met a medical practitioner who recommended some sort of diet that eliminated something (I think it was an amino acid, but it may have been something else), and the child soon began "miraculously" returning to "normal."
Phenylketonuria (PKU)?
@@PokeZillaX3000 PKU is tested for in infants at birth in most countries now, including the USA. Seems unlikely it would have been missed
@@PokeZillaX3000 PKU, celiac, potentially CDD, etc.
while I have deep respect for families with Special Kids, I am not sure if many parents realize that talking negatively about your child in front of your child, whether they can communicate or not, the kids can hear and feel their parents anxiety, sadness.
I hear things from mom and dad that are not kind towards their son. I am curious if this family has developed an At Home IEP plan or if he is able to be in a day program for other special needs kids his age?
One other thing, He is trying to communicate. Around the 10 minute mark, He looks directly at his mom and is clearly trying to communicate.
The parents should consider finding online support groups for parents such as themselves.
yess, I was looking for any comment talking about this but no one seemed to notice that particular problem :(
This interviewer has the same style of parents or caretaker in front of kids talking every time.
Rather than going the psychiatric route, I would explore people that are experts at scanning and seeing which parts of his brain are 'lighting up' to stimuli. Who knows? It's non invasive and may give some clues
Gosh, my heart breaks for this couple and Easton. I can't imagine the stress and pressure of living with having to deal with challenges 24/7. Not only that, but the pain of grieving what was and what is no longer.
Sending love and compassion to the whole family. 💜
I really hope you get blessed by the power of this channel, and the financial donations you will receive! May the money and knowledge help you to find some rest for YOURSELF too and all the best to you, you look like lovely people!!!
Man, I hope Easton’s parents get the respite (and support) they so desperately deserve. My heart goes out to them, especially his father - I could see the emotion.
The love they have for each other and their son is so palpable, and so is their sense of defeat. I hope this family gets the answers they are searching for.
Thank you so much to the parents for sharing their story. I can't believe how overwhealming everything seems to be. I hope they will find peace as he is growing, and will be learning with him, and feel appeasement settle.
I hope you get the answers you are looking for.. Sending best wishes from across the pond 🇬🇧🇺🇸
Thank you so much 🇺🇸🇬🇧
Hoping some answers come for Easton's family. I can't begin to imagine and the sheer exhaustion on the parents faces was so evident. To live in Easton's world must be so hard, I imagine these little people trapped in themselves. Sending prayers and light and strength to the family.
Please look into adaptive/safety beds for Easton as this may provide a secure, enclosed, safe space for him to sleep/rest/relax as well as offer peace of mind for parents. The Cubby Safety Bed is one such example. They are pricey but insurance may cover a portion of the cost due to medical necessity. Praying for your beautiful family ❤
I hope someone seeing this video will be able to help you.
I can relate to "our lives are abnormal".
I know it is not easy to feel so isolated because you take care of your son, but please know that a lot of us relate to you (likely not as much as intensely, but) so I hope this comment helps a little.