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are the FXS tests covered fully by the insurance companies in US?

Nova Mentis Life Sciences (NMLSF) started on some kind of clinical trials for curing Fragile X over a year ago, but I have heard nothing since their "BIG" announcement. Does anybody have an update on their results?

Thank you. I found this to be the most informative and straightforward video on fragile X that I have watched.

The waitlist here in Canada is years long :( for diagnosis

im a carrier n my sisters. i have 2 children with fragile x & 1 with autism as well. This is AMAZING!!!!! i have all this. I need help too treat myself please i appreciate U

My son has Fragile X and he is the sweetest boy ever! I love him so much

I have a lot of physical features of someone with fragile x. Throughout middle school and high school, I was placed in advanced classes. Can someone with this disability have the capacity to be intelligent?

Thanks - great, factual, detailed presentation.

Thanks to all the specialists and parents that work hard to present this great information for parents with adults with FXS. Never too late to learn I like that thought, for me and for the bes care for my dearest son. My son is 24 years old with no speech , severe learning disabities and severe autism,

I am becoming more & more convinced fx is the explanation for the range of conditions in my family. My middle son was dx with autism and was tested for fx but results came back as ‘normal’. He was dx with gdd at age 4. I’m now feeling suspicious that the ‘normal’ results were either incorrect or perhaps on the periphery of normal and perhaps he has a pre mutation. I’ve always sensed there was something different about me & my family. I’ve always been highly sensitive and had odd muscle tone. My father developed PDD in his late 60s, 70s - so that fits in. He and I have the same square jaw that I’ve always thought was odd. He had slightly protruding ears as did his younger brother. I have adhd type issues, as do several on my father’s family and my youngest son. He also has soft skin, poor muscle tone and flat feet. Both my sons have slightly protruding ears, nothing too obvious, luckily their father has very flat ears. My son with autism has a high narrow palate. My youngest son has very obvious adhd (not dx though) and my daughter is highly intelligent but also has autism symptoms. Learning difficulties and eccentricities run through the family on my father’s side so I suspect the carrier gene was passed from his mother, my grandmother. And was passed on to all 4 of her children and it is now showing up in the grandchildren. As far as I know no one has been dx with the full fx syndrome but there are so many matching symptoms I feel like we all need to be tested. The worst effected grandchildren are from the two boys (my father and his brother) and they both had protruding ears and flat feet. They did not have cognitive delays but my father was certainly eccentric and I wonder if some of his apparent high level of narcissism was really a form of autism. A complicating factor though is that my father’s father was also dx with PDD. So it was always assumed my father also had PDD and it was hereditary. I’m now wondering if both grandparents were carriers because my grandfather also had the large ears, long face and difficulty with his feet. He was intelligent but fairly withdrawn. Both my aunts had issues, one has autistic/narcissistic and adhd type traits similar to my father. My other aunt had crohns and died of cancer. But obviously any traits passed down to me and my children and my cousins children would likely have come from our father’s via our grandmother.

Too bad that I can't hear this even w. my speaker & extra speaker set on highest level. A highschool freind of mine in later life had 2 boys who had this condition and she wrote a book after years of research & life experience raising them. Ended her career, her marriage, most of her friendships. Being so tied down, such demand for her time especially by teen boys there wasn't much of her own needs that were met. She sadly looked beyond her age years & was always in crises and worn down. Even sadder, died very young.

Im going through this

Please beware that since a lot of us can't detox well, we have a lot of negative reactions to medication. She is brilliant, but I have to disagree with pushing ssris. I had a pharmaceutical genetic panel ran and it said that with my genetics ssris as well as most psychiatric drugs are contraindicated. I have many other genetics that say I don't detox well, so I have to use natural approaches as much as possible. I have a feeling that's most of us, and sadly they think they have found something to help us with the ssris, but once again it can be made worse if you can't detox it and end up with serotonin syndrome.

Have a good time. I have an 8-year-old child who has Fragl X. I follow you cordially. Perhaps you will discover a cure for this disease and that my child will become normal. In previous years, you were told that you have found that a protein is responsible for this imbalance. Unfortunately, the effect of this injection is for one day only, and you will develop this protein. Any news ? Unfortunately, all episodes are about donations!!! And the most important question is, do routine vaccinations for children, especially MMR, cause these diseases, including autism????

How can I get permission to use your webinars to train staff at my son's day program?

It was clear from the beginning that there was something very different about Stuart... he loved music, though. It was always his escape. His mother was a musician and she used to play the piano for him and he'd drift away. Stuart has had a lifetime of drugs, abuse and misunderstanding, he still loves music, though. He still gets taken away. 😭🥺❤

Thank you so much for this video!

What to do if a kid is constantly making strange noise like "uuu" pause "uuuu"?

Thank you Very much!

Can I please have contact details for Astra. I have a 30 year old daughter who was sexually abused by a Carer. Judy Pine

very interesting .thank you

Is there anyone that would be willing to help our family? My nephew has fragile X syndrome and he just turned 18 and now he is having many different behavior problems such as delusions psychotic behavior and rage fits. The hospitals and medical professionals in our area do not know anything about it. They can not help us and we are so afraid he is going to hurt someone or himself. Please if anyone can help please comment here and i will give you a way to reach me! Thank you for what you do! This syndrome is cery hard on the patient and the family

I found out I'm a Fragile X grey zone carrier when I was pregnant with my first daughter. I was told I shouldn't have symptoms, and it's only about a 1% chance my daughter will have Fragile X, if I pass down my affected X. What I find interesting, is I feel like I do have symptoms of Fragile X, including social anxiety and vision problems. I'm starting to worry that my now 3 year old daughter is showing signs. She seems to have signs of ADHD, she communicates, but isn't using as many words as I feel like she should be. She's also struggled with acid reflex, and can be hyperactive. She is 3 though, so I don't know if it's just her being a toddler. Has anyone seen this in "grey zone " carriers? Can anyone give me guidance/advice? I'd really appreciate it!

This is great information thank you

Thank you for your vidio x

On the dyslexia thing there are 32 forms of it, Mine is the numbers , I invert them , will write down number copying a number. As a FXS carrier, It's TOUGH , I can tell you that. But my son, is THE BEST FELLOW EVER, he is such a blessing.

My oldest son, Jesse, is 36 now. He can read on about a first or 2nd grade level, mostly thru memorization. He graduated from high school, schools in America, HAVE to give special needs students IEP.. modified school work and goals, where they WILL end up with a diploma, graduating with their class. It took his special Ed. Teacher, a saint of a lady named Liz Ripper, two years and 6 weeks for him to KNOW money, what bills, coins, and paper checks WERE, the difference between a $5 and a $50,etc... and it was a STRUGGLE. She was the BEST thing about his years in school. Sadly, there was another boy, his best friend, Sammy, who didn't get enough Oxygen at birth, and was left, much worse disabled than my son was, and the kids at school choose to pick on Sammy, far more than Jesse. Jesse was liked, for the most part, although his younger brother got into several fights defending his big brother, having some one more disabled, turned out to be a blessing for my son to be able to mingle in with the kids a little easier, and gave him a best buddy for years. Jesse ended up taking care of his Dad, who went down hill for about 8yrs,after diagnosed with diabetes, and 2 heart diseases, ending up in a wheelchair with one leg he couldn't feel, for many years.. and our son was the only one left at home, so He did everything, mowed yard with push mower, laundry, light cooking, walked a mile up the road to get mail, rain or shine. And then he died, and left no plan for our son, then 30,who had never had a "guardian" or any outside involvement from the state, etc..... Currently He lives with his deceased younger sister's husband,who's his age,and 4 of her 5 children.He sweeps the floor and loads dishwasher every evening after dinner,helps mow and helps walk family dog.He goes to day program,he enjoys, especially bowling,and his men's group,and he's had a girlfriend,for 2yrs,who is also disabled,few yrs older,and He's happiest he's ever been in his whole life. Mom's,be brave,they can and will far exceed your expectations,I promise you.They said he'd never ride a bike,drive,or function somewhat "normally"...They we're wrong.While we don't let him drive,He has far to much anxiety and response time wouldn't be there...BUT...He has ridden bike since age 8 or 9,took awhile but...He plays guitar,sings,has great sense of humor,is loyal,trustworthy,and a sweetheart 98% of the time.He does have sensory overload, esp sounds like fireworks or gunfire, and he is obese, he sneaks food, and always will. ( Watch their thyroid's!!)... He's gained at least 160lbs since his Dad died, but is starting to loose some, and is walking with the family, for exercise. At some point he will probably have to go into assited living, but that's alright, He gets along fairly well in social settings once he's comfortable. Have hope y'all.

How is it still so hard to get these tests done in Australia?

I can't get screened, even though I have all the symptoms, including the big ears. I conducted my own rapid screening, and according to the tests using three different stains, I have fragile-X, even though females’ rapid tests are inconclusive. So at this point, I’m going to add “Fragile-X Syndrome” on my medical sheets. If doctors want to challenge it, they can test me. But I’m certain I have it, and many of my family members who are autistic or have Alzheimer’s have it. My son has it, and so does my grandson from my daughter. I’m tired of waiting around for a doctor who has an ounce of knowledge in this area to decide to test me. Do I sound angry? Dang right, I am. There isn’t even an adult geneticist in my state to test me.

Surely the curve in repeats and involvement is affected by what seems to be much less people with repeats over 100. It seems most carriers fall in the 70-100 range.

Just wanted to say thank you for this presentation. It has given me a new lead to pursue when I was hitting very frustrating walls with my medical team. No one has offered this as a possibility and the fit is so good I can trace the likely genetic impact through my family tree. The only challenge now is convincing a doctor to order a test.

Very informative and helpful. Best material I’ve been able to find so far.

I just got my results back and I fall into the grey zone for fragile x carrier. I have a lot of mental and physical health issues but according to the “research” I am not at risk for health problems. My son is autistic and is either a premutation carrier himself or a grey zone carrier. We are waiting for his results. I don’t understand the research for grey zone carriers. Someone explain. I have “fibromyalgia” and have had low thyroid but no hashimotos

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Can someone explain how to jump the hurdle of doctor authorization in getting a test for the diagnosis? At my age (59), the children's hospital of Kings daughter is willing to test me, but only if I have a doctor's note. My insurance is willing to pay. But my specialist says it's outside their realm; they won't do it. My PCP won't touch rare conditions with a ten foot pole. They've even denied simple tests such as bone density. I'm not wasting a copay on something I know they'll deny. I have all the symptoms -including big ears-even though I'm a female. Even my Ancestry DNA traits says I'm an introvert and don't remember dreams. But they also said I was not a sun sneezer, so they've been wrong before. My son could be a poster boy for FXS (though he's a man). I thought he had marfans but that was ruled out. We have autism in our family, Alzheimer's (or some senile memory issue). My nephew has the high arch, flat feet, and autism. My grandson has autism. There are only two things I'm not sure about: whether the carrier is Mom or Dad (they both fit), and there's one symptom for males that...nope!...not going there. I have a microscope. Just tell me how to do the test. I've already pulled out ten hairs from my head...but I don't know what I was supposed to be looking at. I doubt any family members will allow me to pull their hair out. But I do have a finger pricker and I tried using food coloring as a stain. All that did was dyed one particular type of speckled cell and bleached all other cells. My daughter did have the Fragile-X test done on her son, and that should come back in a month; but even if it's positive, it doesn't prove I'm the carrier. It just proves either myself or my husband could be. Is there a way to fast-track this?

I was saddened to here him mentioned to terminate a baby with Fragile X 😞 they are sweet individuals and they just want to be loved and give love ❤️

We thank you for your efforts. My son has Fragil X and has hyperactivity. He was not accepted at school. He is 7 years old. Is there an effective medicine?

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Thanks for this informative video. One question please: If the mother that is the carrier gives birth to 3 male children. 1 of them has been diagnosed with the full X-Fragile mutation. The other 2 children haven’t developed any symptom. Those 2 now adults have children: girls and boys. Is there any chance that their kids (that have no symptoms) when they decide to have children, that their children could be affected by this syndrome? Sorry for my English. Thank You. Greetings from Brazil.

Dr. Hagerman diagnosed me when I was in elementary school in Aurora, Colorado. She's amazing and helped me

This is so interesting to me as I have had some life coping problems and this finally gives me some clarity. So much more to research and learn. Thank you.

I really hope you are not forcing people with fragilex to get the c jabs if they don't want them.

Very informational! Thank you for sharing.

The Child doesn't need drugs

Excellent information.Thank you.

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Dr cohen please tell me if an autistic kid tested negative for fragile x is there a risk of having an otherr kid with autism?

Can I contact this Dr please?

If an autistic child tested negative for fragile x is there a risk of having another autistic child ?