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Just Beeing
South Africa
Registrace 16. 10. 2011
With this channel I hope to explore life with Dandy Walker Syndrome. Quick disclaimer, I can only give you my perspective and I know everyone is different but hopefully this will give a bit more insight into daily life with dandy walker syndrome.
Finding Dandy Walker...
While I always knew the gist of the steps that led to my diagnosis with Dandy Walker Syndrome, it was only after a lengthy chat with my mom that I learned all the details.
zhlédnutí: 3 064
Video
Dandy Walker Syndrome: Can I have children???
zhlédnutí 1,6KPřed 6 lety
A matter of great concern for me as a woman with Dandy Walker Syndrome was how the condition would affect my chances of having a family. Here you will hear my findings on the research I did into this subject.
Growing up with Dandy Walker Syndrome
zhlédnutí 9KPřed 6 lety
An account of growing up with Dandy Walker Syndrome. From childhood, through the school and university, I outline the challenges of of Dandy Walker Syndrome.
Welcome to my first ever video. My life with Dandy Walker Syndrome
zhlédnutí 1KPřed 6 lety
Just a quick introduction to myself and the channel.
Your mother is an inspiration. I had a childhood friend whose first child had spina bifida and hydrocephalus. She had shunts that had to be changed due to growth and had to be catheterized. She is an adult now and works. My friend fought for her at school during those years. She would not allow her child to be put in special Ed where she felt she would not be challenged enough. I had so much respect for them both.
My wife is pregnant in the 23rd week. Our unborn daughter was found to apparently have no cerebellum and an oversized 4th ventricle, in ultrasound imaging. MRI is still due. DWS is a possible diagnosis. We are wondering, how much it will affect her. Will she be just a vegetable? We are glad to see, there are people like you, too.
We were told that every case is different. We were given the worst case scenario. My grandbaby has Dandy Walker, she is 10 years old. She has not needed major surgeries. She is a late learner. Walking, talking, potty training were all delayed compared to most normal kids. We think she had a seizure a couple of months ago, not sure if it's because of DW. She is scheduled to see neurology. Which she hasn't seen since she was about 2 years old. They said there was no need to. 😒
My son diagnosed as DWS..at age 11 yrs
❤❤❤❤❤
Peace be upon you, sister. We can contact you
❤Hi from Oklahoma, U.S. I found your videos a few months ago & really just have to say Thank you VERY MUCH. I found out for the 1st. time, about a year & 1/2 ago that I have Dandy Walker also. My neurologist says that for many things that somehow my brain was able to rewire itself, so we never knew that I had it. I was adopted when I was 3 so have no idea what my birth mother might have known about any medical issues & it definately wasn't passed on to my adopted parents. Although I had several miscarriages, it was after I was able to have a healthy daughter. Prayers n hugs to you....& thanks again for your wonderful videos; like you, I've little about dandy walker concerning adults. I know that I didn't mention it; but, I turn 63 next month. The doctor told me that at my age, that they either diagnose you after a brain mri because of a medical issue (mine was seizures from medicine I was put on to try to get away from cigarettes)...or by having an autopsy done.
Daha fazla bilgilendir bizi,oğlum 2buçuk yaşında şant takıldı ne gibi sıkıntılar yaşadın?
Where are you now? I really appreciate your efforts to help others ❤️ keep posting videos
I just found out this week I have this Im 49 I never knew I had it i can't understand how no one didn't know I had behaviour problems as a child I'm shocked
I am so sorry you went through that. My condolences to you and your family 💐
Thank you for sharing your story. It brings so much hope around a syndrome that I have never hear about it. My 1-month baby has it, it was diagnosed in the womb, and I am so scared what the future will brings. Your example of happiness brings to my mom’s heart comfort. God bless you and thanks for sharing.
Thank you for the videos . I was diagnosed with Dandy walker in 2004. You have answered a whole lot of my questions. I hope you put out more videos.
Thank you. Very encouraging
I always thought as most of us experience chronic head and neck pain and get very bad headaches that how would we get thru them without access to pain relief and what about the actual birth? Could our shunt break from the force of us pushing?
Thank you for sharing your story. You are doing a wonderful job with your life, discovering your talents and what makes you happy. I believe the reason the diagnosis is so rare is that there were no ultrasounds until recently. For all we know many more older people could be walking around undiagnosed.
We are trying for pregnancy. Can i get normal baby?? Please reply
From what I’ve heard Dandy Walker is often a random occurrence. If you are worried I would encourage you to seek genetic counseling.
Hi, i was pregnant with dandy walker syndrome baby. Doctors told me to terminate.
I am so sorry you had to go through that. I’ve heard that quite a bit from those expecting a baby with Dandy Walker.
dear sis Hello .... im from Pakistan ... my 1st baby boy is 2yr an old. he's suffering from Developmental delay.. now i come to know that He is Dandy walker variant... i'm much worried ... Please tell me ... can my child move on their life.. he become a normal in life ... i have no idea ... please dear tell me ...
Hello! Thank you for your comment. I can understand your concern. I am not a medical doctor so I cannot give developmental or medical advice. It would be best to check with your doctor what therapies are available in your area that could help in your son's development. Even as a mom talking to your child and playing movement games with them can be quite stimulating, but the best course of action would be to consult your doctor.
Hi
@@JustBeeingMyself thank you so much for reply ... yes.. you r absolutely right and im also concerning with neurologist... and further taking physiotherapy... i wish you all the v v v best dear for your life and i hope that i'll See my child as normal as you in Future.. Thank you so much
@@nilambodare8383 Asslam-o-alaikum
@@TheWorldBeauty.786 hi sister i read your comment that you have a dandy-walker syndrome baby. I have questions. Can i ask you??
What hospital did u use?
You ssid something right there. If u can fuction with 1\3 of your brain i got plemty lol
Love it. I have DW also. This what im also thinkingg About doing. Our stories are so different yet so similar. Id love to hear how your mom told you.
Thank you for your comment. It so rare that I hear from others who have Dandy Walker. I would love to hear your story. To be honest, I can't remember how my mom told me. I'll find out from her.
Same. And thatd so awesome to speak but i have no idea how to do it over CZcams lol
Did you go for any therapy
I didn’t go for any formal therapy growing up, but my parents did a lot of developmental exercises with me through the years. My delays were and are mainly with balance and processing speed.
Thank you for the video...my daughter was diagnosed as well she's now one year old but she can't yet sit ..she has dandy walker malformation.....I now have hope thanks for the video...God bless you
Hlo ma'am plz explain in Hindi (Translat in Hindi)ma'am meri Sister ki beti suffering from Dandywalker'sSyndrome her age is 22months .
I will do my best to have subtitles made in time. The challenge is find people to do the translation.
@@JustBeeingMyself Ok ma'am
You've given me a lot of insight. I'm a special education teacher and I sometimes feel a little frustrated when my students don't want to use their accommodations. Coming from a successful adult with a disability such as you, still battling the fear of seeming different, gives me some more perspective about the students I work with. I'm thankful you shared your story.
Thank you so much for your feedback. I will say this, though, over time I came to appreciate the benefits of my allowances and I would encourage anyone to make full use of them when available. And being different has allowed me to understand my clients from a different perspective.
Hi,Thank u for the video...My daughter was diagnosed with dandywalker malformation at the end of my pregnancy on an ultrasound.At 3 weeks old it was sure on an mri with intensity fliud at the back where the cerebellum should be,she has the cerebellar tissue but her vermis wasnt seen.It was the hardest time in my life,and at the same time shes the best thing in my life.Shes one but doesn't sit up or stand up alone ,she rolls over turns in circles and crawls on her stomach a couple months back.Now shes trying to pull up and crawl on her knees at one years old.I was afird of she gaining hydrocephalus but thank god no sign of that at all.She has an MRI soon,but am so so scared to go through that again.can I teller when u hit ur milestones.I believe shes going to be behind,but am willing to face that.
hi..hows your baby?i have a 3 year old son that has a dandy walker.at the age of 3 he cant walk alone.
Plz tell the condition of ur baby now plz
@cuteangel7849 my grandbaby started walking alone about 3 years old she is 10 years old now with DW.
THANKS FOR SHARING
THANKS FOR SHARING
My granddaughter has the syndrome she’s only 8 years but she don’t talks
can i contact with you in email i have to many questions, i have daughter she have dandy walker..
Meme, you are welcome email me, but might I suggest you post your questions here so that others can maybe add their own. I plan on doing Q&A soon. Also I have to put the disclaimer that I am not an expert and can only speak from my own experience.
Thank you for this video.
How many times have you had shunt revision? My Hannah has Dandy walker syndrome & VP shunt, she is 9 years of age. Did you as a child had any behaviour problems? Are you under any sort of ADH spectrum? How was your childhood? Thank you xx
Thank you for sharing videos. Dandy walker is definitely misunderstood. X
Thank you.
Thank you very much for this lovely video. You are very inspirational and you present in a lovely way!
Your mum sounds lovely.
Very very aresome keep safe ok what a friend in Jesus I protext all
Thank you for your video. My son was just diagnosed with dandy walker variant, he's 7, would love to hear more encouraging words from you.
Thank you, your video gives us hope, my son was just diagnosed with dandy walker variant, can you share us more videos and inspiring thoughts..
What kind of dandywalker syndrome do you have dandywalker malformation or dandywalker variant
Alex alex Going back through medical records I believe I have Dandy Walker variant.
As a Dad who has just learned his unborn son may have this, thank you. You presented facts and realities. I know that DWM can be different for everyone. Your story helps us to know that there are good stories out there.
Hi how is it going? My son is 4years old now and was diagnosed at 6months. He is perfectly fine just extra quiet and extra smart. It can go both ways. There is hope. Stay strong.
@@usooalo3b09 we’ve since found Tobias has Joubert Syndrome - even more rare, but just as challenging. He’s doing really well. You can see his progress on Facebook: facebook.com/mrmoomah/
Hi, my first son diagnosed dandy walker variant by CT scan in hospital. He has a problem about his motoric and balance. 😢
Amri Ishaq motor skills and balance is a challenge with Dandy Walker. I only started walking at age 2. To this day my hand eye coordination isn’t fantastic and I sometimes have balance issues.
@@JustBeeingMyself you right, my son very good in memorize but so hard for writing and walking balance. Can he be better in balance?
I want to thank you for sharing! Congratulations on your marriage! I wish you a happy life! I have a grandchild,18ys, with this syndrome. We just found it this week! I love her very much and I hope she will be better and happy as an adult! Just like you!
You're such an inspiration! Blessings
Any updates?? 🤗
Cheflily O Hello! Thanks for your comment. I realize I haven’t filmed in a while. I will try do a bit of a life update video soon.
I just want to say i'm so thankful for your video. My daughter has dandy walker and i'm so worry. Watching your videos give me hope. Please keep going. I'm so thankful for you sharing.
You have a great attitude and a wonderful mother. Thanks for sharing your story. I've heard of most congenital syndromes over the years, but tonight is the first time I heard of this one. It must be very rare. So, your video may likely help others.
Hello... I have dandy walker also,, the variant is arachnoid cyst fossa posterior 😊 I'm 20 years old and come from Indonesia 🙋🙋🙋🙋
Hello, i was diagnosed with Dandy walker malformation a year ago. I am 32 and I am still unsure if my symptoms come from dandy walker or not. I feel pressure in my head a lot. And i feel tired often with low muscle tone. I am still being evaluated. Prayers would be appreciated
@@jenni3853 Did you have any symptoms when you were younger... How did you know you had dandywalker and what kind are you dignosed with thank you. HOPE YOU THE BEST
@@user-raina_kh I could not stop having episodic migraines. Blood pressure and heart rate would go high. Sometimes I would throw up from severe migraines. My mom never knew i had it cuz they told her i needed glasses. I also know I had a heart arrhythmia and 3 holes in my heart when I was born. They closed on their own.. But I still felt extremely dizzy after laying down. It used to happen when i was very very young around 7yrs old to when i was 13. They would happen 1 time a month to twice a month. Sometimes 1 time every 3 months. But it was the same symptom and it feels like all the neurons in my head are spinning and its painful in a way. As I got into my 20s it happen more often. I was tired all the time and still had migraines. By the time I turn 30 they found it on a ct scan. I have dwm.
@@user-raina_kh alex my dwm is a fluid filled cyst on tye 4th ventrical. My doctors believe my symptoms are not due to dwm, they sent me to an ENT and found out i had a hole in my semicircular canals that send send misinformation to the wrong area of my brain causing mix signals. With dandy walker you can have malformations on other parts of your body
@@jenni3853 Hope you the best in life. Did you have any problems walking or talking when you were a baby?And please can you tell me which age you started to walk.when I was fullterm with my baby girl I found out,out of no where that my baby had no brian tissue which meant DWM.. I was shocked it was scary for me because through all my pregnancy my baby was healthy and out of no where this. I found out 9 days before I gave birth I wouldn't sleep eat just cry so when I had her she had her mri when she was 3 weeks old it was so scary for me. It showed she had minimal celebellar tissue and singnificant reduction in the size of the pons and was always Googleing things that made me worse.. My beautiful baby is 3 and half months a very healthy baby but am scared for what's to come in the future plz pray for me as I will pray for you
Thank you for sharing my 23 year old daughter has dandy walker with VP shunt. You and her share similar stories. She has mild she developed seizures at the age of 22 years of age. Has few not so noticable challenges but each day I thank God to have her in my life she is such a blessing in my life.
Just Being I love this stuff mate, mind having a look at my stuff and do you mind giving me some feedback on my channel and maybe sub :)