Living with ACC - The Basics of DCC
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- Опубліковано 3 гру 2024
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Potential topics for upcoming videos:
how to get through a day
sports: horse back riding, golf, running, lacrosse
my job experiences
being a special education one on one teaching assistant
Becoming a wife
Becoming a mom
Struggles I have as a mom with ACC
Struggles I have a mom of a child with ACC
Just want to say I find all of your videos very inspiring! I am a soon to be first time mommy of a 35 week active little boy with isolated CACC. We discovered his defect at 20 weeks and i had a very difficult time accepting the diagnosis and processing all the information. I tried not to google too much, but you know how that goes ;-) The day i found your videos it was like a ton of weight had been lifted off my shoulders. You gave me the strength i needed to get over my hump and come realize that there is a good chance everything will be okay :-) So, just wanted to throw a huge thank you your way and let you know how much i appreciate your channel and all information. Can't wait for the next video ;-)
yes! i too googled! it wasn't good and that's why i started my channel. I don't want parents to be afraid of this disorder. I am so happy i could help relieve some of your stress. congrats on your pregnancy and enjoy it! don't let the amount of doctors that come into the hospital room overwhelm you! most of them are there out of curiosity, in my opinion. if you haven't already had an MRI done of the brain, maybe get one the day the baby is born to rule out any other birth defects. every hospital says they have to drug the baby for the test but, they don't. we asked if our hospital would try it while our daughter was sleeping. we told them if it didn't work, at least we tried. The nurse took her, feed her a bottle, taped a pacifier to her mouth so it wouldn't fall out and she slept through the whole test! it worked so well our hospital now offers it as an option now for babies. good luck! thanks for watching my videos!
+Living with ACC We did have an MRI at 22 weeks that showed no other abnormalities. I think even his ventricles were okay and not enlarged at that point in time. We do plan on having a repeat scan done a week after he is born. We are delivering him locally and then have to travel 2.5hrs to Maine Medical center to have it done. It kinda stinks because my specialist, neurologist, and genetic counselor are all down in southern maine. So, we are keeping our fingers crossed that he does just fine and we dont have to make too many trips down there! ;-).
Selam. Çocuğunuzun durumu şimdi nasıl? Türkiyeden yazıyorum. Eşim 32 haftalık hamile ve 24. Haftada çocuğumuza ACC teşhisi kondu. Diğer değerleri normal. Hidrosefali değerleri biraz sınırda ama düşmesini bekliyoruz. Bizi neler bekliyor bilmiyoruz ve çok tedirginiz. Tecrübelerinizi benimle paylaşır mısınız?
I am 25 and have ACC (I can’t recall whether it’s PACC or CACC). I found out when I was 17 and went to get an mri for something else. I am high functioning as well. I really appreciate your videos. ^_^
hahaha! gotta love my husband who edits my videos and the corrections he placed into the video for me! i could redo the video and edit it again but way bother! this is me and my husband is the best!!!
Hi, I myself have ACC, so far I’m high functional but took a lot of processing to get where I’m at ... honestly thanks to my dad ... he taught me how to over come my struggles which was and still is being in touch with my thoughts and emotions...
It is really hard for me to open up to people as I get A LOT of emotional stress which quit frankly can disconnect my left and right brain where as instead of crying or releasing any tension out, I start to loose myself as my brain disconnects to the point I can’t remember what caused me to feel this way and it physically and mentally hurts. Not like a normal headache... it’s more like over thinking? But the emotions are stuck and won’t release. Luckily I been taught to do these breathing techniques and exercises that literally helped me connect the left and right brain that also helped me access my thoughts and emotions together so I can remember what had caused me to feel that way. But now as for today, I still struggle but now even though my brain sometimes gets all unstable, it’s been so much easier for me to connect my brain. Sometimes I need help expressing my anger, because it gets stuck sometimes. But over all, I’m ok
Selam. Türkiyeden yazıyorum. Eşim 32 haftalık hamile ve 24. Haftada çocuğumuza ACC teşhisi kondu. Diğer değerleri normal. Hidrosefali değerleri biraz sınırda ama düşmesini bekliyoruz. Bizi neler bekliyor bilmiyoruz ve çok tedirginiz. Tecrübelerinizi benimle paylaşır mısınız?
@@OTOPORTMUSTAFABADEM could you repeat that but it English ? Lol cheers
I have a bachelors in Neuroscience and want to be a neuroscientist. I've been studying ACC in my free time and just wanted to drop you a line and say thanks for the informative videos! Peace
+IAMILLEGAL2 that's very cool that you want to be a neuroscientist! The ACC Community will greatly benefit from you studying up on this disorder. Thank you for taking the time and keep watching the videos.
good information
hello I also have acc I got headaches all the time and all the doctors my mum took me to said oh it's just from playing to many video games my mum looked to the only option to go to get an MRI and I have acc and 3 cicts there like balls of fluid replacing parts of my brain and I also was recently diognoesed with autism and my doctor said I'm lucky as I'm the most normal with this as most people with my condition are worse I hope I helped.
MJ Brown hi
hi there,
thanks for sharing informative videos. To my known a child has got partial ACC. you mentioned about a NoCC institute of California. Request you to share the details for the same.
thanks a lot!!
+Atul Kumar Gosain the NODCC or National Organization for the Disorders of the Corpus Callosum is based in California. They have a website www.NODCC.org and a Facebook page under their name. Please check them both out. You can get lots of information, resources and meet other with ACC in their families.
The institute's are different. They are colleges in California where two researchers for ACC are based. Cal Tech has Lynn Paul and Fuller University has Warren Brown.