Don’t be afraid to advocate for yourself even if medical professionals taunt you. I found a lump in my chest and after several monograms the doctor told me it was determined to be a cyst. I told them they never even did an actual biopsy. The Dr said they didn’t need to because the mammogram was detailed enough to show a cyst. I told them I wanted the lump out. They said no. I then told them if they don’t take it out, I will cut it out myself and end up in the ER. Reluctantly they booked me for removal but not before berating me many times for wasting our tax dollars. 6 months later I got the lump out and I demanded they test it. It WAS cancer. I am alive and cancer free today because I fought hard for myself.
Be your own advocate. I’ve also had several things missed and I’m in the medical field. I got hook worms from a rescue dog. For a year I was tearing my skin. I was sent to a psych hospital. One doctor decided to humor me and run tests. He about fell off his rocker. It took 2 pills of ivermectin and the nightmare was over. Most insurance will pay for a second opinion. Much love from Kentucky, Lesley and Service Dog Jake.
There's a reason Ivermectin won the Nobel Prize, yet it was anathema to even suggest it during the recent plague. Privately though? Doctors were quietly taking it and prescribing it. If they'd admitted that Ivermectin worked? They couldn't have gotten emergency medical approval for the vaccine. What a travesty. Who knows how many lives were lost for the sake of drug money?
As a former EMT, we are trained to take two things especially seriously. 1. Mothers almost always know! 2. If a person says “I think I’m going to die.” Or something similarly serious. Take it serious because a large percentage of the time they end up being right.
When I interview a pediatrician. Ask, doing. you believe. in mothers intuition? If the answer no - they are gone. I found a great one who, when I asked him the question he went on and on that yes he does are his reasoning is that parents spend the most time with kids so they able to see changes. He also said, mom's just know....He has never waived off a mother's intuition and 99% of the times they were correct. HIRED!
As a former ER/PICU/NICU nurse, I have seen this happen more than not. And I worked with one doctor who refused to listen to the mom about her son's chronic diarrhea. When he left I questioned the mom some more, found out they had been camping and her kids had been swimming in a river for over a week before the diarrhea started. Found out other things that pointed me in the direction of giardia or similar little beasties. I ordered a giardia test for the boy without the doctor's knowledge and it came back not just postive but really high. The doctor was absolutely floored - came to me asking how I knew...I said I listened to the mom, that moms usually know. He was ticked off at me, thankfully didn't report me for ordering a test without a doctor's order - and mom was so grateful. Her son was nothing but skin and bones, was so sick, miserable, not eating or drinking at that point... Likewise, when we had people come in just feeling 'off' and enough to make them scared, they usually had a heart attack or coded within an hour. Their body knew things were 'off' and getting worse, and they tried to get to help before it hit. Like an aura before a seizure, the body tells you if you listen.
When my sister , a nurse in a school for children with serious medical needs , was being trained for the job , a teacher said something every doctor needs to listen to. She said always listen to the mother’ . How true that is , and how many times is a parent just swept aside .
@Linda Carruthers, As a nurse myself who has also been a nursing instructor. That is only partly true, only because you have to consider what the parents have said, what the child's is presenting, and expertise of the provider. Meaning it is a combined effort to diagnose a child.
@@detrajackson5992 👍You’re right in many cases, parents (people in general) don’t have the correct words or even the accurate perspective to make the claims they make, HOWEVER, doctors SHOULD listen with more discernment. I wasnt just completely dismissed, I was blamed for outrageous lies & called unstable (that was the most flattering comment about me), but I kept my child ALIVE against the terrible odds and I was RIGHT!!! But this didn’t change my status for the better, it only got worse.
that doesn't always apply. that woman who went to jail because she kept saying her daughter has cancer but she never did. she said she had a tons of health problems but she didn't. even though she kept taking her to doctors. you cant always listen to the parents. there are other branches of healthcare where parents dont know the severity of their childrens health. they think they do but they wont actually do anything about it. they wont listen to doctors. the difference is if the doctor is competent, not always that the parent is right. the parent can recognize something is wrong but shouldn't be taken as an expert opinion. a child died where I am because mom thought she knew better then doctors and the child died of meningitis. mom and dad both went to jail for it. she knew something was wrong and refused to listen to even her nurse friend
My little brother died from this in 2006.. my parents, me and my sister and all unaffected carriers. Little brother died at under 1 year old, his health dramatically fell and 2 days later he was gone. I was 6 when it happened and I still remember so clearly when my parents came to my grandparents where I had been dropped when they were in hospital. Remember it like yesterday.. really horrible They caught the disease only after he had passed rest in peace lil bro, Valtteri 2005-2006
@ Steph T 👍👏 Yes, doctors often have high opinions of themselves & often cannot listen to ANYONE ELSE or admit when they’re WRONG, which they ARE sometimes.
saw a doctor's response to this type of comment his words: it's because the cure isn't covered by ins. so they will come back and say they don't know what's wrong or misdiagnosis.
@@margaretr5701I'm thinking USA The Dr's over here won't even admit that Lymes disease is everywhere. It is hard to get the test done and has a lot of false negatives. Then it goes into long stage illness and most Dr's just let it progress....
So sorry you had that experience!! I am a humble family doctor but I had the "punch line" before Haley's doctors did. Too many doctors forget that rare disorders still exist. They cannot forget that fact.
When my granddaughter had Graves’ disease at 8 yrs of age. I diagnosed it ( as an RN I recognized and studied the symptoms) Her doctor wouldn’t believe it so they sent her to an eye doctor and also a Neurologist. Thankfully I was there for the neurology appointment. I told the doctor my concerns and what I noticed. She listened to me and Indeed she did have it.
My parents told me that, as a newborn, they knew that I had a medical problem, so my parents took me to a big hospital to be checked out by pediatricians. The pediatrician instantly said my issue WAS NOT HYPOTHYROIDISM, as “that is an older woman’s disease”. Long story short, after roughly 1 year and many tests and misdiagnosis, the pediatrician told my parents that “if they couldn’t find out what my problem was, that they should put me in an institution and get on with their lives; that I probably not live to see my 14th birthday; and some other nonsense. With Divine intervention, a blood test proved that my medical problem WAS SEVERE HYPOTHYROIDISM! The very thing some doctor REFUSED TO TEST FOR IN THE BEGINNING, causing much expense to my parents and lost ability for me to develop motor skills necessary for babies to have in their first year. This has adversely affected my normal growth and physical abilities to function like a normal child. ALL BECAUSE OF THE SHORT-SIGHTEDNESS OF A DOCTOR TO HAVE AN OPEN MIND TO PERFORM A SIMPLE BLOOD TEST! It is called “the practice of medicine” , because the Medical profession has yet to get diagnosis right the first time! I am now 72 years old and STILL struggle with getting my doctors to listen to me about my SYMPTOMS! Not all patients are HYPOCHONDRIACS!
There is as saying that doctors look for horses instead of Zebras in medicine. The most common diagnosis is what they start off with and work their way to more obscure things.
Obamacare didn't help with getting a correct diagnosis. I live in the medical field due to a rare disease. It's sad to see so many fall through cracks due to the restraints Obamacare has put on doctors. It basically has tied the doctors hands. They don't make the decisions anymore. Medical care went from bad to worse and the scariest part is no other president can change it.
And guess what your hyperthyroidism I'm sure was a cause of an environmental interaction flash vaccination or some type of medicine or some type of antibiotic f****** otic
Two and one half years after a mastectomy I had a health problem. It put me in a wheelchair. All medical test showed nothing wrong. I insisted on having tho breast implant removed and was constantly told it wasn’t the cause. No lab test to check that. I talked to a silicone survivor and she told a doctor (6 hours away from me)
The picture of the baby at 2:46 is so beautiful. I don't notice at all what the mom notices about her eyes being too far apart, but I understand the mom knows best, it's her second baby and she would be the one to know. Just wanted to say, eyes far apart or not, she just so sweet and beautiful looking to me! I never got to have a girl so I'm partial to all baby girls!!
@@olivegreen337 It's not "intuition," but “Fetal-Maternal Microchimerism.” When a woman is carrying a baby, the cells of the mother and baby interchange. They are literally one! This continues years after the birth. This is why a mother absolutely KNOWS when something is wrong. Look up the name of it.
The biggest issue with medical mysteries is the medical gas lighting. Doctors kept telling this mother who knew something was wrong with her baby that he baby is fine. In an older person they say there's nothing wrong with you when you KNOW there is something wrong. Doctors need to be willing to look deeper and listen to their patients. It took 8 years for me to be diagnosed with Ehlers-Danlos Syndrome a genetic disorder and everything in my life ALL those "unrelated" health issues were related and had a cause!
Don’t get me started! As the result of a back injury that went undiagnosed and ignored by a back surgeon for months, I will live with Fibromyalgia for the rest of my life. He is no longer doing spinal surgery.
@@sandragruhle6288 sadly many people get fibromyalgia because their pain went untreated for too long. I also injured my back but can't have surgery because it's too high risk.
@@amandamccallum6796 I am sorry! It can be caused by menopause, untreated back pain, and lack of sleep over long periods of time. I hit the trifecta, but Lyrica, available in generic, has been helpful. It took some getting used to, but it works. If the high risk is a cause you can mitigate, by all means, work at it! I have had nine spinal surgeries, and lead an active social life. It can be done.
@@sandragruhle6288 unfortunately my perfect storm is Ehlers-Danlos Syndrome I don't make collagen properly at the genetic level and don't heal well. I had a slip and fall blew my L4,L5,C6, torn rotator cuff, rotated tailbone. EDS also comes with the comorbidity of orthostatic intolerance so my BP drops rapidly and I faint. Migraines are also really bad and my autoimmune system is weakened. I am blessed that I have one of the best pain management doctors in Canada so I am able to live my life as best as I can.
@@amandamccallum6796 I am so sorry and have some idea of your pain. I have had seven lower back surgeries and two on my neck for deteriorating discs. I too, was in an accident at 14. As an adult I had rotator cuff surgery which the doctor Pooh-pooped for months, then was surprised at the size of the tear. Lyrica may not be for you, since I fainted twice while getting used to it, but it really does help. I distract myself by keeping active socially, play Bridge as often as I can, read voraciously, and co-teach a Bridge class. I keep tabs on my former high school kids and just had one of my girls appointed to a Federal judgeship. They have exceeded my expectations on so many occasions, but I was lucky to teach in a small town with amazing kids. Their work ethic is fantastic!
I went undiagnosed for Non-Hodgkins Lymphoma for 7 years; the doctors I had seen thought that it was only an old person's disease, so never tested me for Cancer. I finally was taken seriously when I lost 50 pounds in a month and a half, and had it throughout my body: liver, spleen, and all of my lymph nodes. First, San Francisco County Hospital and treated at Stanford University for oth Chemotherapy and a Bone Marrow Transplant. It has been 33 years, since my CORRECT diagnosis.
I have had so many Dr's basically 98% tell me my illnesses were all in my head it took me yrs to fight for diagnoses but now I refuse to see a Dr no matter how sick or in pain I'm in unless I absolutely have to.
These doctors can always make you feel like you're crazy. Had a friend who at 18 went to the ER because she couldn't breath. They told her she was having a panic attack. She told them she wasn't and it was something else. So she called a friend's mother who was a doctor who told her to demand an x-ray and she'd be there shortly. Well lo and behold it was collapsed lung and after test and everything they diagnosed her with Marfan syndrome.
It's really interesting the different treatments and jargon from male to female patients. I had the same symptoms as the man as a teen and was treated terribly. They didn't call them Seizures they called them faints. They also figured it was female problems.
Doctor with prepubescent female patient: "It's just a young kid thing, you'll get better once you start getting periods." Doctor with teenage female patient: "It's just puberty, you'll get better once you've fully mature." Doctor with young adult female patient: "It's just a normal part of your cycle. Maybe try losing some weight or getting pregnant and having a baby?" Doctor with middle aged female patient: "It's just menopause, you'll feel better once you're hormones have settled down." Doctor with elderly female patient: "It's just because you're getting older, nothing we can do about aging I'm afraid." Doctor with any age male patient: "We should run some tests and investigate what's wrong."
It's amazing how often ophthalmologists find diseases that other doctors miss, such as brain tumors. I can't count the number of children I have cared for who had their brain tumors discovered by an ophthalmologist.
Those tests they do on your eyes are a real indicator when something else is wrong. They measure vascularity and if it is not right, you could be on your way to some problems.
KUDOS TO HAYLEYS MOM AND DAD FOR BEING SO DILIGENT AND KEEPING UP WITH HAYLEY'S HEALTH ISSUES FROM THE START THAT HELPED FIND & FIX THE PROBLEM EARLY!! YOU ARE GREAT PARENTS!! 🥰🥰🥰🥰💞💞💞💞🌹🌹🌹🌹
Laru's boyfriend and family were so supportive. Two of these stories were diagnosed by an ophthalmologist. It sure seems surprising that the hospitals didn't notice his heart arythemia.
Ophthalmologists can detect signs of illness way before symptoms show. You should always see them every two years or yearly. Could well save your life.
My Aunt told me a long time ago "Doctors PRACTICE medicine". I firmly believe in expressing my concerns and working as a team. I'd rather hear we don't know than that's not possible or there's a 1 in a million chance well guess what 1 is still a possibility. No one knows my body better than me. Much love, healing and happiness to all ❤
So many people say the same thing, especially women, the Dr won’t listen. It took me 16 years to get my Daughter diagnosed with Autism, my own health issues I heard the same, your female, it’s in your head, I’m a Dr what do you know? I’m a mother who knows her child, I’m a person who knows her own body. Even now, 35 years later I STILL have the same issues with Drs. I’m known as a “difficult” patient all because I advocate for myself. I just want normal life for my daughter and I. I’ve been threatened with arrest because I was protecting my daughter from teachers who refused to listen, I’ve been threatened with refusal to prescribe medication if I don’t do what the Dr wanted. Every time I have to have contact with Drs I get panic attacks, they did this to us, and we arnt the only ones.
Some doctors have a tendency to only be concerned with what they see right now. I really admire the doctors to keep up with the latest discoveries because they are the only ones that will find what is hard to find
If the outcome for children with Hurlers is so much better the earlier it is diagnosed and treated, why are medical professionals so quick to dismiss the worries of the parents themselves and put off even considering Hurlers for so long? They must listen to the parents - they are the ones who have the expertise in their own child. The medics are there to find and fix, not to disrespect the parent's fears until it may be too late.
I watched an episode on this show a long time ago, and one of the doctors said "in medical school there is a saying if you hear hoof beats think horses not zebras". Horses are the common diseases, and the zebras are the rare ones
Haley had chronic congestion which should have been a red flag along with her stiffness. Her Mom know their was something wrong. A Mom can usually detect something abnormal about her son or daughter
This is why doctors need to listen to mothers. I stated from when my kid was about 6 weeks that I was afraid my daughter was autistic. No reason. Just a weird gut feeling. Her cries weren’t standard. She didn’t have different cries for different things. No startle to sounds. High pain threshold (no crying at vaccines) lots of little things. She was diagnosed last year.
I thought she looked perfect! Mum knew something wasn't quite right, but I don't think it was anything to do with her face,or shape of her head. I would have been concerned about her not raising her arms, though. I think I would have been hesitant in believing there was anything seriously wrong, myself.
When I worked in maternity, I was told to look at the parents before making a judgement on the baby. I have seen FLK (funny looking kid) and NF wherever (normal for ...) obviously this before political correctness!!!
We need more specialists like Dr. House and his team. I don't know how many Doctors become Diagnosticians. But there definitely seems to be a need for more of that speciality
Most doctors are diagnosticians. But bc our society thinks we beed doctors for every sniffle, they get overwhelmed by patients and dont take the time to look deeper.
To become a doctor in the US, it is 4 years of undergrad . 4 years of med school. 3 years of training all being underpaid for working 80 to 120 hours. If you question the sheer data, walk through a medical library. What amazes me is when a child is healthy!!!! It is NOT easy! And the data is growing every day. Thank you for sharing Hurlers.
As an R.N., I am so aware of the fact that I need to listen closely to what my patients say and how they look and behave. This is important for all physicians too!!!
My dad has Myasthenia Gravis.. it was the same when he first got sick (in his 50's) they thought he was stroking out at first. He still battles with it... it's really awful ☹️
I have Myasthenia gravis and I knew she had it when she first started describing her symptoms. Once you know what to look for its very obvious. Unfortunately for me, treatments don't work for me so I'm still very weak, but I'm glad the treatments worked for her.
When my baby was in hosbital sick the pedestrian was doing rounds with a bunch of interns. He ssid to them did you hear what the mother just said. No one aswered most likely out of gear as he was one of the best. I head said i felt some thing was wrong on friday. He told them again and told them always listen to the mother they always know something is wrong.
It's so frustrating when they don't believe you. After years of frightening symptoms, several doctors and tons of testing, I came across my own potential dx after finding an article on Medscape Neurology. I brought a copy of the article and all copies of my blood work from over the years to my doctor. Surgery was scheduled and nearly all of my symptoms went away almost immediately. You must advocate for yourself.
I thought the same thing. And I've known adults with no noticeable conditions with eyes farther apart than that. I wanted to smack the aunt for saying she had Down syndrome eyes.
Unfortunately, doctors oftentimes become overly confident in their own skill and knowledge. They forget medicine is a practice and they must continue studying, researching and learning even once licensed practitioners. It's vital to advocate for yourself, seek out multiple opinions. If Dr does not listen, find another.
Wow, that’s kind of scary and wonderful at the same time. Wonderful that they found the diagnosis for these two people but also scary that she almost lost her life not knowing what was wrong with her. This is very scary to go through in life I feel so sorry for her, but thankful she went on to live a great life with her twin children.
I had the same experience as the lady. They found out that I have a genetic disorder called Ehlers Danlos Syndrome, a heart murmur and Orthostatic Hypotension. I have numerous other diagnoses as well but those were what caused my symptoms. I didn't get diagnosed until I was 23! Took my whole life up until that point to get Dr's to listen to me. Before I received my diagnosis, I was told it was my period, it was just bc I was a woman, that I wanted attention, that I just had growing pains, all sorts of degrading things. Fight for yourself! Be your own advocate! Don't let anyone dismiss you if you have concerns!
I know the feeling. My official diagnosis came at 42 at a connective tissue disorder study. My dad participated and found out he has EDS as well. He was 69. He was referred to as “sickly” as a kid and later as a hypochondriac and I was, “…a hypochondriac just like your daddy!”
How interesting that for both Haley and Larue, it was an eye doctor that, first of all actually listened to them, but second, put all the pieces together to lead to the diagnosis. Maybe not the ones to make the final diagnosis, but the ones to turn the tide and point everyone in the right direction. Both conditions started in other systems, but it was the eyes that brought it all together and provided the key to the diagnosis.
I had to wait almost 3 years to be diagnosed with diabetes. a simple diagnosis and I was pretty sure I had it. Instead I was diagnosed with sleep apnea, vascular dementia, a bad diet, and a Covid spreader. No joke. I finally left the doctor's office and went to the ER.
Undiagnosed diabetes can be deadly. My mother had a boyfriend who was always tired. He wanted to marry her, but she didn't like the fact that he was only about 36 years old, and always tired and sleeping. They broke up and sometime later he was diagnosed. It was too late for him though because complications included gangrene intestines. He passed within a few years of their breakup. Very sad.
Please look at the yt channel called "beat diabetes". Eating sugar will not allow for insulinnto drop. Insulin resistance is at the heart ofntype 2 diabetes. Even in type 1 diabetes, insulin is damaging. The less sugar you eat the less insulin you need, both damage your blood vessels, eyes, kidneys, nerves and heart. I beg you!!
I have known I'm diabetic for years, noone would listen. It took getting double. Pneumonia and almost dying for them to finally dx me diabetic type 2, with a glucose level of 564 in the ambulance
Actually, the baby's eyes do look spaced. I have son who was born with a tumour on his face. It impeded his eyesight because it was just below eyes. I was not afraid to look up special docs. His tumour was removed on his first birthday. Never give up. Glad these parents did not give up!!
I had MDs - including specialists - misdiagnose me for YEARS. The eventual/true diagnosis was something that paramedics, nurses, etc, had suggested all along.
She's so cute and I can't imagine having to be so terrified that somethings wrong with your baby but to not even know for sure what it was would be horrifying .My Daughter was born a few weeks early and only weighed 4 pounds when She was born but She was perfect and We went Home the next day .But She had eat infections a lot and We spent a couple times in the hospital but She was ok and is all grown up now but She's still played with ear infections a lot .
Guessed myasthenia with the first 2 symptoms. It’s appalling that drs don’t start over from scratch instead of assuming the previous Dr was right. Hence the strep throat to which was ludicrous. It was not that hard to diagnose if you just took a decent history. The last gentleman sounds like he had a vagus induced seizure. Ordering an MRI was ridiculous since it was a cardiac/ vagal reaction. I’ve seen 5 people at least have seizures following this reaction. Anytime the cardiac output falls, seizures can happen. The vagus nerve lowers the pulse rate causing low cardiac output It is a benign.condition. In this case, I believe the nausea abd vomiting caused the vagal reaction followed by a more profound drop in pulse rate and the resulting seizure. There is one difference between neurogenic grandmal seizures and those caused by low cardiac output. Those originating from the brain are followed by a postictal period where the pt is very sleepy and confused. That is absent in a “cardiac” seizure. I wish they would teach this in medical and nursing schools cause I didn’t learn this until on the job.
Thank you for the clarification re: different origins of Grand Mal seizures. I guessed the MG as well, and thought Vago-Vasal due to the positional shifts affecting consciousness. I had felt nausea and fainted a few times in Nursing School of Cornell U, in the 60's, had been told it was caused by low BP due to Vago-Vasal nerve response. It stopped on its' own...not long after a few episodes...was never treated...no recurrence in the last 50 years...my BP has been low normal for many years...no heart issues.
@@susanpaul4752 I’m. an ER doc and former RN, and have seen generalized seizures 6 x due to cardiac arrest and/or v fib. Always check the pulse first cause the pt may need CPR It’s the same pathophysiology as a vagal nerve stimulation ie. the pulse and BP drops to nothing and so does cardiac output. In your case,you may have had transient dysauttonomia when you were younger possibly. Glad you outgrew it cause it can be horrible to deal with long term.
My husband had dental X-rays and a small dot showed up at the base of his head.. our dentist was insistent that it be checked out.. turned out he not only had brain cancer, but also lung cancer.. died 2 yrs later.
Score 2! I got Larue's dx right before they gave it away!! I feel bad for her too because I am a doctor who doesn't trust my own colleagues for this very reason.
Looking at these photos and videos of Haley, she looked like a normal baby, I don't see her eyes being to far apart, but that's just me. It's so sad. Also, she died in 2013. 😢
I noticed through my experience that the doctors that worked with me they only zero in on their expertise nothing else. I fell down the stairs and got a compound fracture on two lower vertebraes. I was going through horrible pain in my sciatica no one paid me any attention, it was like the couldn't or wouldn't address this problem.
I knew early on that something was very, very wrong with my baby. The doctors acted like I was a silly, new time mom.. She was sick, with infections and fevers all the time. I couldn't get the pediatrician to refer her to a specialist at a university. I finally called the specialist's secretary, told her what I'd been dealing with for 18 months. She got me in quickly:. Without a referral! My daughter turned out to be deficient in two of the 3 major antibody types. Doctor's:. Please listen to parent's. I had numerous nieces and nephews, by my older siblings. I also had two stepchildren. But the doctors kept treating me like a nervous first time mom. I really wanted to kick them where it would hurt.
There is such a lack of diagnosticians in the medical community. Docs aren’t being taught to listen and accumulate facts anymore. As a patient it feels like you’re on a conveyor belt being pushed through the office (if you’re lucky) & given a prescription, even if you don’t want medication.
This is why doctor should always listen to the mothers especially if mothers is complaining since babies born mother has that intuition motherly instinct sometimes when they know something's wrong doctors just listen to the mothers you can do the testings and whatever prove them wrong but make them feel better if the mother thinks something's wrong with her baby then do all the testing necessary to find out what's wrong with them
If you watch the whole segment of baby Hayley, you'd find out she lived, after the filming of this. Reading further into the comments, people say she died in 2013, I guess. So, I agree with you, RIP baby Hayley.
@@jasminegiachetti5150 So did I. But I read into more of the different comments and replies of those different comments, and people said she died. I haven't looked it up myself tho.
Oh honey......I'm so sorry for your loss. But thank you and your precious daughter for the gifts of life .....I wish they would ban alcohol like they do Mary Jane.......
Around 14 year of age I began having vomiting seizures that lasted for 24 to 78 hrs...during this time I dry heave constantly, as if my body is trying to expel my stomach or turn it inside out. They happened once or twice a year, and grew worse in intensity as I grew older. Today, at 51 years old, I have up to 30 of them a year. Still doctors can not tell me why or what is wrong with me... My 28 year old son has recently moved back home to help me out during covid, and I have noticed he suffers from the same vomiting seizures but not as badly or for as long as I did at his age. I am scared for him...I haven't been able to gain any weight, I am constantly loosing weight and my body is eating its self to remain alive...my time is short, and I would like to know what is wrong with me before it's too late for my son.
Im so sorry, that must be frightening and feel hopeless. Did anything traumatic happen to you before 14 to trigger it ? Have you tried CBT for the seizure and eating ? They may give you some temporary relief and better quality of life, whilst you continue to find the cause. I hope you find out. Sending hugs 😊 I also just did a trawl through some medical journals, and came across this.... maybe it's worth further research ? autonomic status epilepticus and Panayiotopoulos syndrome. All the best to you both.
Go see a genetic specialists. If your son has this also it is hereditary. Make an appointment as soon as possible. They were run a test and they will be able to tell you if you inherited any kind of genetic problem.
My son has been I'll for five years medical doctors are stumped. My son suffers daily. Seizures,headaches. Extreme pain through out his body. Forget what he's doing. Goes into some type of trans it's very scary and very heartbreaking.
I reside in Georgia USA. There's a GA law that states from the date of your last seizure you cannot legally drive again for 12 full months. Zero exceptions. I experienced a fall onto a concrete slab floor. I live alone so I didn't know if I experienced a seizure or not. Once I was finally diagnosed I was placed on anti-seizure meds for several months - 'just in case. The RX can indeed have nasty side effects. (I literally had to sleep wearing long socks covering my hands and arms, otherwise I would awaken with scratches resembling claw marks all over my face, neck, arms, etc. It felt insects were crawlingunder my skin.) Not being able to drive would have meant I could not do my job, the least expensive transportation I could locate was over $125 round-trip + tip. No mass transit available in my area. These stories were initially frustrating then uplifting. We can all benefit from being thankful for everyone featured in this video and grateful for our own blessings.
I was diagnosed - finally - with mental illness in my late 40s after another suicide attempt. I asked my life-long family doctor for help in my early 20s. I knew. He literally said, "You're not bouncing off the walls." Not until he retired, and a new dr took over did someone listen to me. Just devastating to know you're suffering and being dismissed.
Don’t be afraid to advocate for yourself even if medical professionals taunt you. I found a lump in my chest and after several monograms the doctor told me it was determined to be a cyst. I told them they never even did an actual biopsy. The Dr said they didn’t need to because the mammogram was detailed enough to show a cyst. I told them I wanted the lump out. They said no. I then told them if they don’t take it out, I will cut it out myself and end up in the ER. Reluctantly they booked me for removal but not before berating me many times for wasting our tax dollars. 6 months later I got the lump out and I demanded they test it. It WAS cancer. I am alive and cancer free today because I fought hard for myself.
I cut a lump out of my own breast- trust your gut!
Your inner self knew what doctors didn't. Always listen to yourself! I'm glad you fought for yourself.
Some Doctors just went into medicine for the name and money they have no common sense.
If ur fat they just tell u it's ur weight when anything is wrong
@@loldidyoureally3246 that’s when you tell them if losing weight was easy we’d all be skinny
Precious little Haley passed in 2013. RIP beautiful little angel.
❤
She was a precious angel on earth now she is one with the Lord.
Oh thank you for the update! So sad. What a darling little girl.
She's so beautiful! Thank you for sharing her and your story.❤
Be your own advocate. I’ve also had several things missed and I’m in the medical field.
I got hook worms from a rescue dog. For a year I was tearing my skin. I was sent to a psych hospital. One doctor decided to humor me and run tests. He about fell off his rocker. It took 2 pills of ivermectin and the nightmare was over.
Most insurance will pay for a second opinion.
Much love from Kentucky, Lesley and Service Dog Jake.
Th psych route is the easiest explanation. Especially when you're a woman! 😢
There's a reason Ivermectin won the Nobel Prize, yet it was anathema to even suggest it during the recent plague. Privately though? Doctors were quietly taking it and prescribing it. If they'd admitted that Ivermectin worked? They couldn't have gotten emergency medical approval for the vaccine. What a travesty. Who knows how many lives were lost for the sake of drug money?
They always try and act like women are crazy. It's absolutely disgusting. Glad you found a diagnosis ❤ love from KY
I want to give that Mother a hug!
As a former EMT, we are trained to take two things especially seriously. 1. Mothers almost always know! 2. If a person says “I think I’m going to die.” Or something similarly serious. Take it serious because a large percentage of the time they end up being right.
When I interview a pediatrician. Ask, doing. you believe. in mothers intuition? If the answer no - they are gone. I found a great one who, when I asked him the question he went on and on that yes he does are his reasoning is that parents spend the most time with kids so they able to see changes. He also said, mom's just know....He has never waived off a mother's intuition and 99% of the times they were correct. HIRED!
As a former ER/PICU/NICU nurse, I have seen this happen more than not. And I worked with one doctor who refused to listen to the mom about her son's chronic diarrhea. When he left I questioned the mom some more, found out they had been camping and her kids had been swimming in a river for over a week before the diarrhea started. Found out other things that pointed me in the direction of giardia or similar little beasties. I ordered a giardia test for the boy without the doctor's knowledge and it came back not just postive but really high. The doctor was absolutely floored - came to me asking how I knew...I said I listened to the mom, that moms usually know. He was ticked off at me, thankfully didn't report me for ordering a test without a doctor's order - and mom was so grateful. Her son was nothing but skin and bones, was so sick, miserable, not eating or drinking at that point...
Likewise, when we had people come in just feeling 'off' and enough to make them scared, they usually had a heart attack or coded within an hour. Their body knew things were 'off' and getting worse, and they tried to get to help before it hit. Like an aura before a seizure, the body tells you if you listen.
Henry Ford said if you believe it it's true😢
AMEN
EMT myself and what you say is right
When my sister , a nurse in a school for children with serious medical needs , was being trained for the job , a teacher said something every doctor needs to listen to. She said always listen to the mother’ . How true that is , and how many times is a parent just swept aside .
@Linda Carruthers, As a nurse myself who has also been a nursing instructor. That is only partly true, only because you have to consider what the parents have said, what the child's is presenting, and expertise of the provider. Meaning it is a combined effort to diagnose a child.
And Nf:
@@pamgerhardt5472 what is nf . What does it mean ?
@@detrajackson5992 👍You’re right in many cases, parents (people in general) don’t have the correct words or even the accurate perspective to make the claims they make, HOWEVER, doctors SHOULD listen with more discernment. I wasnt just completely dismissed, I was blamed for outrageous lies & called unstable (that was the most flattering comment about me), but I kept my child ALIVE against the terrible odds and I was RIGHT!!! But this didn’t change my status for the better, it only got worse.
that doesn't always apply. that woman who went to jail because she kept saying her daughter has cancer but she never did. she said she had a tons of health problems but she didn't. even though she kept taking her to doctors. you cant always listen to the parents. there are other branches of healthcare where parents dont know the severity of their childrens health. they think they do but they wont actually do anything about it. they wont listen to doctors. the difference is if the doctor is competent, not always that the parent is right. the parent can recognize something is wrong but shouldn't be taken as an expert opinion. a child died where I am because mom thought she knew better then doctors and the child died of meningitis. mom and dad both went to jail for it. she knew something was wrong and refused to listen to even her nurse friend
If we could keep the government and the insurance companies out of medical treatment, you'd be surprised how much better healthcare would be.
Meanwhile people keep crying for 'universal/socialize' healthcare, the exact OPPOSITE of this.
Insurance = Legalized Mafia
Ktetefo esther chapoval 😅
. P
Q9q99
@@daniellejarvis157
Not until doctors receive training in natural health and healing. All they now learn is which drug they get kick-backs for using.
My little brother died from this in 2006.. my parents, me and my sister and all unaffected carriers.
Little brother died at under 1 year old, his health dramatically fell and 2 days later he was gone. I was 6 when it happened and I still remember so clearly when my parents came to my grandparents where I had been dropped when they were in hospital. Remember it like yesterday.. really horrible
They caught the disease only after he had passed
rest in peace lil bro, Valtteri 2005-2006
❤❤
I hate how so many medical professionals
ignore the fears of parents and pooh pooh
their worries 🤬
Drs poo poo all ages of patients unfortunately. More often than not, Drs just don't listen.
@ Steph T 👍👏 Yes, doctors often have high opinions of themselves & often cannot listen to ANYONE ELSE or admit when they’re WRONG, which they ARE sometimes.
saw a doctor's response to this type of comment
his words:
it's because the cure isn't covered by ins. so they will come back and say they don't know what's wrong or misdiagnosis.
@@Thinking.Of.Some.Handle In which country would this be allowed?!
@@margaretr5701I'm thinking USA The Dr's over here won't even admit that Lymes disease is everywhere. It is hard to get the test done and has a lot of false negatives. Then it goes into long stage illness and most Dr's just let it progress....
So sorry you had that experience!! I am a humble family doctor but I had the "punch line" before Haley's doctors did. Too many doctors forget that rare disorders still exist. They cannot forget that fact.
Being told it's all in your head when you're suffering is the worst kind of insult.
When my granddaughter had Graves’ disease at 8 yrs of age. I diagnosed it ( as an RN I recognized and studied the symptoms) Her doctor wouldn’t believe it so they sent her to an eye doctor and also a Neurologist. Thankfully I was there for the neurology appointment. I told the doctor my concerns and what I noticed. She listened to me and Indeed she did have it.
My mom diagnosed mine when I was 15. She knew by my eyes
My parents told me that, as a newborn, they knew that I had a medical problem, so my parents took me to a big hospital to be checked out by pediatricians. The pediatrician instantly said my issue WAS NOT HYPOTHYROIDISM, as “that is an older woman’s disease”. Long story short, after roughly 1 year and many tests and misdiagnosis, the pediatrician told my parents that “if they couldn’t find out what my problem was, that they should put me in an institution and get on with their lives; that I probably not live to see my 14th birthday; and some other nonsense. With Divine intervention, a blood test proved that my medical problem WAS SEVERE HYPOTHYROIDISM! The very thing some doctor REFUSED TO TEST FOR IN THE BEGINNING, causing much expense to my parents and lost ability for me to develop motor skills necessary for babies to have in their first year. This has adversely affected my normal growth and physical abilities to function like a normal child. ALL BECAUSE OF THE SHORT-SIGHTEDNESS OF A DOCTOR TO HAVE AN OPEN MIND TO PERFORM A SIMPLE BLOOD TEST!
It is called “the practice of medicine” , because the Medical profession has yet to get diagnosis right the first time! I am now 72 years old and STILL struggle with getting my doctors to listen to me about my SYMPTOMS! Not all patients are HYPOCHONDRIACS!
There is as saying that doctors look for horses instead of Zebras in medicine. The most common diagnosis is what they start off with and work their way to more obscure things.
TOTALLY AGREE WITH YOU. 95 % OF DOCTORS IN NORTH ANERICA ARE TRAINED PUPETS WITH NO USE OF THEIR BRAIN.
Obamacare didn't help with getting a correct diagnosis. I live in the medical field due to a rare disease. It's sad to see so many fall through cracks due to the restraints Obamacare has put on doctors. It basically has tied the doctors hands. They don't make the decisions anymore. Medical care went from bad to worse and the scariest part is no other president can change it.
And guess what your hyperthyroidism I'm sure was a cause of an environmental interaction flash vaccination or some type of medicine or some type of antibiotic f****** otic
Two and one half years after a mastectomy I had a health problem. It put me in a wheelchair. All medical test showed nothing wrong. I insisted on having tho breast implant removed and was constantly told it wasn’t the cause. No lab test to check that. I talked to a silicone survivor and she told a doctor (6 hours away from me)
The picture of the baby at 2:46 is so beautiful. I don't notice at all what the mom notices about her eyes being too far apart, but I understand the mom knows best, it's her second baby and she would be the one to know. Just wanted to say, eyes far apart or not, she just so sweet and beautiful looking to me! I never got to have a girl so I'm partial to all baby girls!!
I wish this show was still on. This is what doctors are for. Finding a cure.
Tell that to them. All they care about is money and not the patient.
@@kikis-dg3tqyikes. Are you a doctor? And why are you not? Step up
@@chrismartin5450 Thanks, I appreciate that!
@@kikis-dg3tq Well I certainly care, but I don't deny that some certainly don't seem to.
Such a beautiful little girl. Her mother seemed to know there was a problem even before she was born, and couldn't help looking for what it was.
YES IT IS CALLED A MOTHER'S INTUITION!!!
Totally the mother saved her life and helped that she got an early diagnose so now she can hopefully live a normal and healthy life.
@@teijaflink2226 she died at the age of 10
@@olivegreen337 It's not "intuition," but “Fetal-Maternal Microchimerism.” When a woman is carrying a baby, the cells of the mother and baby interchange. They are literally one! This continues years after the birth. This is why a mother absolutely KNOWS when something is wrong. Look up the name of it.
The biggest issue with medical mysteries is the medical gas lighting. Doctors kept telling this mother who knew something was wrong with her baby that he baby is fine. In an older person they say there's nothing wrong with you when you KNOW there is something wrong. Doctors need to be willing to look deeper and listen to their patients. It took 8 years for me to be diagnosed with Ehlers-Danlos Syndrome a genetic disorder and everything in my life ALL those "unrelated" health issues were related and had a cause!
Don’t get me started! As the result of a back injury that went undiagnosed and ignored by a back surgeon for months, I will live with Fibromyalgia for the rest of my life. He is no longer doing spinal surgery.
@@sandragruhle6288 sadly many people get fibromyalgia because their pain went untreated for too long. I also injured my back but can't have surgery because it's too high risk.
@@amandamccallum6796 I am sorry! It can be caused by menopause, untreated back pain, and lack of sleep over long periods of time. I hit the trifecta, but Lyrica, available in generic, has been helpful. It took some getting used to, but it works. If the high risk is a cause you can mitigate, by all means, work at it! I have had nine spinal surgeries, and lead an active social life. It can be done.
@@sandragruhle6288 unfortunately my perfect storm is Ehlers-Danlos Syndrome I don't make collagen properly at the genetic level and don't heal well. I had a slip and fall blew my L4,L5,C6, torn rotator cuff, rotated tailbone. EDS also comes with the comorbidity of orthostatic intolerance so my BP drops rapidly and I faint. Migraines are also really bad and my autoimmune system is weakened. I am blessed that I have one of the best pain management doctors in Canada so I am able to live my life as best as I can.
@@amandamccallum6796 I am so sorry and have some idea of your pain. I have had seven lower back surgeries and two on my neck for deteriorating discs. I too, was in an accident at 14. As an adult I had rotator cuff surgery which the doctor Pooh-pooped for months, then was surprised at the size of the tear. Lyrica may not be for you, since I fainted twice while getting used to it, but it really does help. I distract myself by keeping active socially, play Bridge as often as I can, read voraciously, and co-teach a Bridge class. I keep tabs on my former high school kids and just had one of my girls appointed to a Federal judgeship. They have exceeded my expectations on so many occasions, but I was lucky to teach in a small town with amazing kids. Their work ethic is fantastic!
I went undiagnosed for Non-Hodgkins Lymphoma for 7 years; the doctors I had seen thought that it was only an old person's disease, so never tested me for Cancer. I finally was taken seriously when I lost 50 pounds in a month and a half, and had it throughout my body: liver, spleen, and all of my lymph nodes. First, San Francisco County Hospital and treated at Stanford University for oth Chemotherapy and a Bone Marrow Transplant. It has been 33 years, since my CORRECT diagnosis.
Moms always know when something isn’t right. Such a beautiful little girl. I hope she recovers completely.
She died in 2013 😔
😬😬😬
😢😮 Angels received her.
Wow, her mom is a true hero.
Ehlers danlos syndrome Warrior here !! 🦓 wow so many interesting illnesses,
Some I didn’t even know!! Thanks for the upload!!
4th zebra I found here! Got a whole dazzle! 😜
Me too!!
I have had so many Dr's basically 98% tell me my illnesses were all in my head it took me yrs to fight for diagnoses but now I refuse to see a Dr no matter how sick or in pain I'm in unless I absolutely have to.
So heartbreaking when I found out she passed away at age 11…what a precious girl
Oh no 💔 I was hoping she would be thriving now, that’s absolutely heartbreaking. May she RIP.
Oh wow.😢 RIP
These doctors can always make you feel like you're crazy. Had a friend who at 18 went to the ER because she couldn't breath. They told her she was having a panic attack. She told them she wasn't and it was something else. So she called a friend's mother who was a doctor who told her to demand an x-ray and she'd be there shortly. Well lo and behold it was collapsed lung and after test and everything they diagnosed her with Marfan syndrome.
I am not a doctor but was screaming from beginning at the screen about John…his heart,his heart,his heart!
My first thought was POTs just from the first story he gave. :( Like...he flatlined right in front of them and they didn't check his heart?
Watching Haileys mom recount finding out her daughter would die was absolutely heartbreaking 💔
I searched Haley’s name and found her obituary from 2013. She outlived the timeline she was originally given. So sad for her family.
How old was she when she passed?
@@ytcommenter375 9
@@Blackhole6800 Thank you. At least it was longer than they were originally told. Your heart just broke for them.
Oh thank you for telling us
Did they find what she had?
Haley passed away 02/21/2013. May she rest in peace 🕊️
That's so sad 😞 I genuinely hoped she was OK... do you know how she passed?
Yes I would like to know how she passed
Her obituary does not say how she passed.
My sons birthday is 2/21 🥺
I wondered as they only talked of her in the past tense .
It's really interesting the different treatments and jargon from male to female patients. I had the same symptoms as the man as a teen and was treated terribly. They didn't call them Seizures they called them faints. They also figured it was female problems.
Doctor with prepubescent female patient: "It's just a young kid thing, you'll get better once you start getting periods."
Doctor with teenage female patient: "It's just puberty, you'll get better once you've fully mature."
Doctor with young adult female patient: "It's just a normal part of your cycle. Maybe try losing some weight or getting pregnant and having a baby?"
Doctor with middle aged female patient: "It's just menopause, you'll feel better once you're hormones have settled down."
Doctor with elderly female patient: "It's just because you're getting older, nothing we can do about aging I'm afraid."
Doctor with any age male patient: "We should run some tests and investigate what's wrong."
I think we've got to admit that doctors don't know what they are doing when this sort of thing happens. They are just afraid to say " we don't know"
@@sunnyquinn3888EXACTLY .
It's amazing how often ophthalmologists find diseases that other doctors miss, such as brain tumors. I can't count the number of children I have cared for who had their brain tumors discovered by an ophthalmologist.
it happened to my pastor at my church where i used to live
he had a pituitary adenoma
There are reasons. One is that vision changes with many conditions
Those tests they do on your eyes are a real indicator when something else is wrong. They measure vascularity and if it is not right, you could be on your way to some problems.
The eyes are the windows
KUDOS TO HAYLEYS MOM AND DAD FOR BEING SO DILIGENT AND KEEPING UP WITH HAYLEY'S HEALTH ISSUES FROM THE START THAT HELPED FIND & FIX THE PROBLEM EARLY!! YOU ARE GREAT PARENTS!! 🥰🥰🥰🥰💞💞💞💞🌹🌹🌹🌹
Mother's that mourn......is the most sad thing....after the loss of mine it's hard to see the pain in another mother's eyes
Laru's boyfriend and family were so supportive. Two of these stories were diagnosed by an ophthalmologist. It sure seems surprising that the hospitals didn't notice his heart arythemia.
Hospital doctors are such ARROGANT, IDIOTS WHO THINK THEY KNOW IT ALL!!!!
Ophthalmologists can detect signs of illness way before symptoms show.
You should always see them every two years or yearly.
Could well save your life.
My Aunt told me a long time ago "Doctors PRACTICE medicine". I firmly believe in expressing my concerns and working as a team. I'd rather hear we don't know than that's not possible or there's a 1 in a million chance well guess
what 1 is still a possibility. No one knows my body better than me. Much love, healing and happiness to all ❤
Oh wow, Mystery Diagnosis! I absolutely LOVED this show as a kid! Haven’t seen it in forever
I can really empathize with Larousse…I was recently diagnosed with MS and apparently I’ve had it since I was 20 and I am new 71….
So many people say the same thing, especially women, the Dr won’t listen. It took me 16 years to get my Daughter diagnosed with Autism, my own health issues I heard the same, your female, it’s in your head, I’m a Dr what do you know? I’m a mother who knows her child, I’m a person who knows her own body. Even now, 35 years later I STILL have the same issues with Drs. I’m known as a “difficult” patient all because I advocate for myself. I just want normal life for my daughter and I. I’ve been threatened with arrest because I was protecting my daughter from teachers who refused to listen, I’ve been threatened with refusal to prescribe medication if I don’t do what the Dr wanted. Every time I have to have contact with Drs I get panic attacks, they did this to us, and we arnt the only ones.
What a beautiful baby no matter what
Some doctors have a tendency to only be concerned with what they see right now. I really admire the doctors to keep up with the latest discoveries because they are the only ones that will find what is hard to find
I love the “it’s all in her head.” I’ve had that one p,aged before and it was proved wrong.
Congratulations, Larue…….so happy for you, Sugar. I have a son and five daughters…your symptoms would have scared me to death.
If the outcome for children with Hurlers is so much better the earlier it is diagnosed and treated, why are medical professionals so quick to dismiss the worries of the parents themselves and put off even considering Hurlers for so long? They must listen to the parents - they are the ones who have the expertise in their own child. The medics are there to find and fix, not to disrespect the parent's fears until it may be too late.
I watched an episode on this show a long time ago, and one of the doctors said "in medical school there is a saying if you hear hoof beats think horses not zebras". Horses are the common diseases, and the zebras are the rare ones
Haley had chronic congestion which should have been a red flag along with her stiffness. Her Mom know their was something wrong. A Mom can usually detect something abnormal about her son or daughter
Gotta love it with doctors who don't know what's wrong with someone, so immediately it must be all in your head...🙄😒
i miss the show mystery diagnosis. i learned so much that show. wish they had more
This is why doctors need to listen to mothers.
I stated from when my kid was about 6 weeks that I was afraid my daughter was autistic. No reason. Just a weird gut feeling. Her cries weren’t standard. She didn’t have different cries for different things. No startle to sounds. High pain threshold (no crying at vaccines) lots of little things.
She was diagnosed last year.
I haven’t seen it all, but my heart is breaking for mama………
the baby looked just like her dad her eyes were perfect.
I thought she looked perfect! Mum knew something wasn't quite right, but I don't think it was anything to do with her face,or shape of her head. I would have been concerned about her not raising her arms, though. I think I would have been hesitant in believing there was anything seriously wrong, myself.
A mother knows.
almost a little bit TOO much like her dad.
When I worked in maternity, I was told to look at the parents before making a judgement on the baby. I have seen FLK (funny looking kid) and NF wherever (normal for ...) obviously this before political correctness!!!
She died 2013
We need more specialists like Dr. House and his team. I don't know how many Doctors become Diagnosticians. But there definitely seems to be a need for more of that speciality
Most doctors are diagnosticians. But bc our society thinks we beed doctors for every sniffle, they get overwhelmed by patients and dont take the time to look deeper.
To become a doctor in the US, it is 4 years of undergrad . 4 years of med school. 3 years of training all being underpaid for working 80 to 120 hours. If you question the sheer data, walk through a medical library. What amazes me is when a child is healthy!!!! It is NOT easy! And the data is growing every day. Thank you for sharing Hurlers.
As an R.N., I am so aware of the fact that I need to listen closely to what my patients say and how they look and behave. This is important for all physicians too!!!
My dad has Myasthenia Gravis.. it was the same when he first got sick (in his 50's) they thought he was stroking out at first. He still battles with it... it's really awful ☹️
I have Myasthenia gravis and I knew she had it when she first started describing her symptoms. Once you know what to look for its very obvious. Unfortunately for me, treatments don't work for me so I'm still very weak, but I'm glad the treatments worked for her.
Baby Hayley only survived because she have a great mom who doesn't take "everything is ok" as answer from the doctor... mother knows best.
sadly, apparently she died in 2013
@@AccidentallyOnPurpose that’s so sad
@Caitlyn Carvalho What? I think it might just be you.
@@elleg3651 AQ
When my baby was in hosbital sick the pedestrian was doing rounds with a bunch of interns. He ssid to them did you hear what the mother just said. No one aswered most likely out of gear as he was one of the best. I head said i felt some thing was wrong on friday. He told them again and told them always listen to the mother they always know something is wrong.
It's so frustrating when they don't believe you. After years of frightening symptoms, several doctors and tons of testing, I came across my own potential dx after finding an article on Medscape Neurology. I brought a copy of the article and all copies of my blood work from over the years to my doctor. Surgery was scheduled and nearly all of my symptoms went away almost immediately. You must advocate for yourself.
2:55 I would say that she looked like her father !😅
I agree she looks a lot like her dad
I thought the same thing. And I've known adults with no noticeable conditions with eyes farther apart than that. I wanted to smack the aunt for saying she had Down syndrome eyes.
She looked like my allergy laden nephew. With a puffy face, and a constant, running, snotty nose.
It took eleven years to get my daughter diagnosed with a rare bone marrow disease called PNH.
Unfortunately, doctors oftentimes become overly confident in their own skill and knowledge. They forget medicine is a practice and they must continue studying, researching and learning even once licensed practitioners. It's vital to advocate for yourself, seek out multiple opinions. If Dr does not listen, find another.
Exactly listen to the patient PLEASE, happens to me all the time.
PLEASE, LISTEN!!!
Wow, that’s kind of scary and wonderful at the same time. Wonderful that they found the diagnosis for these two people but also scary that she almost lost her life not knowing what was wrong with her. This is very scary to go through in life I feel so sorry for her, but thankful she went on to live a great life with her twin children.
Patrick’s dad is sooooo sweet! He’s probably the best dad!
I wonder if Patrick had any siblings later on. I wonder how John is doing nowadays
I had the same experience as the lady. They found out that I have a genetic disorder called Ehlers Danlos Syndrome, a heart murmur and Orthostatic Hypotension. I have numerous other diagnoses as well but those were what caused my symptoms. I didn't get diagnosed until I was 23! Took my whole life up until that point to get Dr's to listen to me. Before I received my diagnosis, I was told it was my period, it was just bc I was a woman, that I wanted attention, that I just had growing pains, all sorts of degrading things. Fight for yourself! Be your own advocate! Don't let anyone dismiss you if you have concerns!
I know the feeling. My official diagnosis came at 42 at a connective tissue disorder study. My dad participated and found out he has EDS as well. He was 69. He was referred to as “sickly” as a kid and later as a hypochondriac and I was, “…a hypochondriac just like your daddy!”
My grown kids seem to have EDS too. Subluxing joints is my main clue!
Me too..hEDS :(
What do you do when you've had test after test after test and everything is normal. Except for me having mild anemia.
How interesting that for both Haley and Larue, it was an eye doctor that, first of all actually listened to them, but second, put all the pieces together to lead to the diagnosis. Maybe not the ones to make the final diagnosis, but the ones to turn the tide and point everyone in the right direction. Both conditions started in other systems, but it was the eyes that brought it all together and provided the key to the diagnosis.
This was a real eye opener for me ( pun intended). I have under estimated eye doctors and learned a valuable lesson
You didn't read the other comments, did you?
I love how they made a diagnosis that was very common for once the cardiac arrhythmia
But it shouldn't have taken that long to diagnose once they saw that he flatlined. They should have done a cardiac workup, not just an EKG.
I had to wait almost 3 years to be diagnosed with diabetes. a simple diagnosis and I was pretty sure I had it. Instead I was diagnosed with sleep apnea, vascular dementia, a bad diet, and a Covid spreader. No joke. I finally left the doctor's office and went to the ER.
That's ridiculous! I hope you found a new primary care doctor!
Undiagnosed diabetes can be deadly. My mother had a boyfriend who was always tired. He wanted to marry her, but she didn't like the fact that he was only about 36 years old, and always tired and sleeping. They broke up and sometime later he was diagnosed. It was too late for him though because complications included gangrene intestines. He passed within a few years of their breakup. Very sad.
My OBGYN diagnosed my diabetes when I complained of urination issues. I already had sleep apnea, which usually comes with diabetes.
Please look at the yt channel called "beat diabetes". Eating sugar will not allow for insulinnto drop. Insulin resistance is at the heart ofntype 2 diabetes. Even in type 1 diabetes, insulin is damaging. The less sugar you eat the less insulin you need, both damage your blood vessels, eyes, kidneys, nerves and heart. I beg you!!
I have known I'm diabetic for years, noone would listen. It took getting double. Pneumonia and almost dying for them to finally dx me diabetic type 2, with a glucose level of 564 in the ambulance
I loved this show - I wish they'd bring it back
Actually, the baby's eyes do look spaced. I have son who was born with a tumour on his face. It impeded his eyesight because it was just below eyes. I was not afraid to look up special docs. His tumour was removed on his first birthday. Never give up. Glad these parents did not give up!!
Hey can we seriously get all the episodes of MD approved here for the states? It would be helpful.
The next time I get sick I'm going to an eye doctor!!!!
I had MDs - including specialists - misdiagnose me for YEARS. The eventual/true diagnosis was something that paramedics, nurses, etc, had suggested all along.
Don't leave us hanging! What was your mystery diagnosis?
Now it says *_TWO_** MONTHS* since your post. *WHAT'S YOUR CORRECT DIAGNOSIS?!*
WHAT?!??????
Wow I see nothing wrong with this babys face. Shes a beautiful lil girl. ❤🙏
If a doctor is clueless as to what a patient has, they should ask other doctors to help. Not just push symptoms side.
She's so cute and I can't imagine having to be so terrified that somethings wrong with your baby but to not even know for sure what it was would be horrifying .My Daughter was born a few weeks early and only weighed 4 pounds when She was born but She was perfect and We went Home the next day .But She had eat infections a lot and We spent a couple times in the hospital but She was ok and is all grown up now but She's still played with ear infections a lot .
Check to see if she has an intolerance to dairy!
Guessed myasthenia with the first 2 symptoms. It’s appalling that drs don’t start over from scratch instead of assuming the previous Dr was right. Hence the strep throat to which was ludicrous. It was not that hard to diagnose if you just took a decent history. The last gentleman sounds like he had a vagus induced seizure. Ordering an MRI was ridiculous since it was a cardiac/ vagal reaction. I’ve seen 5 people at least have seizures following this reaction. Anytime the cardiac output falls, seizures can happen. The vagus nerve lowers the pulse rate causing low cardiac output It is a benign.condition. In this case, I believe the nausea abd vomiting caused the vagal reaction followed by a more profound drop in pulse rate and the resulting seizure. There is one difference between neurogenic grandmal seizures and those caused by low cardiac output. Those originating from the brain are followed by a postictal period where the pt is very sleepy and confused. That is absent in a “cardiac” seizure. I wish they would teach this in medical and nursing schools cause I didn’t learn this until on the job.
Thank you for the clarification re: different origins of Grand Mal seizures. I guessed the MG as well, and thought Vago-Vasal due to the positional shifts affecting consciousness. I had felt nausea and fainted a few times in Nursing School of Cornell U, in the 60's, had been told it was caused by low BP due to Vago-Vasal nerve response. It stopped on its' own...not long after a few episodes...was never treated...no recurrence in the last 50 years...my BP has been low normal for many years...no heart issues.
@@susanpaul4752 I’m. an ER doc and former RN, and have seen generalized seizures 6 x due to cardiac arrest and/or v fib. Always check the pulse first cause the pt may need CPR It’s the same pathophysiology as a vagal nerve stimulation ie. the pulse and BP drops to nothing and so does cardiac output. In your case,you may have had transient dysauttonomia when you were younger possibly. Glad you outgrew it cause it can be horrible to deal with long term.
This is crazy. I have heart disease. I was born with it and I have Afib and I have seizures. This is so scary to me
Happy these folks were able to get answers, get treatment and live a full life:)
My husband had dental X-rays and a small dot showed up at the base of his head.. our dentist was insistent that it be checked out.. turned out he not only had brain cancer, but also lung cancer.. died 2 yrs later.
Does anyone else think John looks and sounds like Ray Ramano!?!?
Score 2! I got Larue's dx right before they gave it away!! I feel bad for her too because I am a doctor who doesn't trust my own colleagues for this very reason.
What a beautiful miracle!!!! I’m so happy for everyone
Mr Rogan had Sick Sinus Syndrome for those wondering. The stretcher test he was talking about is a tilt table test.
I’m getting a tilt table test next month for dysautonomia
Love the way he looks at the camera…..makes it feel like he’s giving me the eye ! 😊❤
Very Educative and interesting. Thank you
Makes you wonder about doctor training, I guessed it was MG in the first few minutes and I’m not a doctor.
Everyone talking about how Haley's eyes are too far apart.....they look perfectly normal to me.
Wendillon she’s perfect to me too! Shocking how they spoke of her
You can’t be sure they are using her actual photo’s or whether they were before or after treament.
@@58Kym Actually a simple google search will show you that those are her actual photos, and the timeline makes it obvious it's before treatment.
Same tbh
I thought her eyes looked perfectly normal too 🤷♀️
Looking at these photos and videos of Haley, she looked like a normal baby, I don't see her eyes being to far apart, but that's just me. It's so sad.
Also, she died in 2013. 😢
Learned a lot with this video.
I noticed through my experience that the doctors that worked with me they only zero in on their expertise nothing else. I fell down the stairs and got a compound fracture on two lower vertebraes. I was going through horrible pain in my sciatica no one paid me any attention, it was like the couldn't or wouldn't address this problem.
That first baby looks just like her dad. You could easily tell oh yeah they’re father and daughter.
I knew early on that something was very, very wrong with my baby.
The doctors acted like I was a silly, new time mom..
She was sick, with infections and fevers all the time.
I couldn't get the pediatrician to refer her to a specialist at a university.
I finally called the specialist's secretary, told her what I'd been dealing with for 18 months.
She got me in quickly:. Without a referral!
My daughter turned out to be deficient in two of the 3 major antibody types.
Doctor's:. Please listen to parent's. I had numerous nieces and nephews, by my older siblings. I also had two stepchildren. But the doctors kept treating me like a nervous first time mom.
I really wanted to kick them where it would hurt.
Me too!!
There is such a lack of diagnosticians in the medical community. Docs aren’t being taught to listen and accumulate facts anymore. As a patient it feels like you’re on a conveyor belt being pushed through the office (if you’re lucky) & given a prescription, even if you don’t want medication.
I have myasthenia Gravis too … !!I had the thymectomy ..,, very similar
Smart mom, doctors don't know everything
This is why doctor should always listen to the mothers especially if mothers is complaining since babies born mother has that intuition motherly instinct sometimes when they know something's wrong doctors just listen to the mothers you can do the testings and whatever prove them wrong but make them feel better if the mother thinks something's wrong with her baby then do all the testing necessary to find out what's wrong with them
I couldn’t imagine anything more terrifying than being told your baby has a life threatening illness. It’s so brilliant that there was a treatment
RIP Hayley ❤️
If you watch the whole segment of baby Hayley, you'd find out she lived, after the filming of this. Reading further into the comments, people say she died in 2013, I guess. So, I agree with you, RIP baby Hayley.
@@bonedaddyshonestreviews6933 i thought the transplant helped her make the enzyme ;(
@@jasminegiachetti5150 So did I. But I read into more of the different comments and replies of those different comments, and people said she died. I haven't looked it up myself tho.
@@bonedaddyshonestreviews6933 she did die in 2013.
Oh honey......I'm so sorry for your loss. But thank you and your precious daughter for the gifts of life .....I wish they would ban alcohol like they do Mary Jane.......
Around 14 year of age I began having vomiting seizures that lasted for 24 to 78 hrs...during this time I dry heave constantly, as if my body is trying to expel my stomach or turn it inside out.
They happened once or twice a year, and grew worse in intensity as I grew older. Today, at 51 years old, I have up to 30 of them a year.
Still doctors can not tell me why or what is wrong with me...
My 28 year old son has recently moved back home to help me out during covid, and I have noticed he suffers from the same vomiting seizures but not as badly or for as long as I did at his age.
I am scared for him...I haven't been able to gain any weight, I am constantly loosing weight and my body is eating its self to remain alive...my time is short, and I would like to know what is wrong with me before it's too late for my son.
Im so sorry, that must be frightening and feel hopeless. Did anything traumatic happen to you before 14 to trigger it ? Have you tried CBT for the seizure and eating ? They may give you some temporary relief and better quality of life, whilst you continue to find the cause. I hope you find out. Sending hugs 😊
I also just did a trawl through some medical journals, and came across this.... maybe it's worth further research ?
autonomic status epilepticus and Panayiotopoulos syndrome. All the best to you both.
Look into CVS (cyclic vomiting syndrome) sorry you and your son are going through this and hope you get answers soon!
Go see a genetic specialists. If your son has this also it is hereditary. Make an appointment as soon as possible. They were run a test and they will be able to tell you if you inherited any kind of genetic problem.
test for nutrition deficency or thyroid problems. if your son has it too, it might be genetics.
apparently in some cases of seizure, vomiting is the sole symptom. you should check the temporal lobe if you haven't already.
My son has been I'll for five years medical doctors are stumped. My son suffers daily. Seizures,headaches. Extreme pain through out his body. Forget what he's doing. Goes into some type of trans it's very scary and very heartbreaking.
I reside in Georgia USA. There's a GA law that states from the date of your last seizure you cannot legally drive again for 12 full months. Zero exceptions. I experienced a fall onto a concrete slab floor. I live alone so I didn't know if I experienced a seizure or not. Once I was finally diagnosed I was placed on anti-seizure meds for several months - 'just in case. The RX can indeed have nasty side effects. (I literally had to sleep wearing long socks covering my hands and arms, otherwise I would awaken with scratches resembling claw marks all over my face, neck, arms, etc. It felt insects were crawlingunder my skin.) Not being able to drive would have meant I could not do my job, the least expensive transportation I could locate was over $125 round-trip + tip. No mass transit available in my area. These stories were initially frustrating then uplifting. We can all benefit from being thankful for everyone featured in this video and grateful for our own blessings.
Any update on the baby? Also gold star for me I diagnosed the second girl before she even went to the ER.
Amazing how Mom instinctively knew something was wrong. The Drs just weren’t listening. Typical.
I was diagnosed - finally - with mental illness in my late 40s after another suicide attempt. I asked my life-long family doctor for help in my early 20s. I knew. He literally said, "You're not bouncing off the walls." Not until he retired, and a new dr took over did someone listen to me. Just devastating to know you're suffering and being dismissed.
Two ophthalmologists save their patient’s lives