This is the 5th time I rewatch this video. Thank you so much for sharing this family's struggle and their awesome fights along with the doctors to make Aiden's life a better one. I'm studying TSC for my neuro exam coming up in med school and this video helps me see what real patients and their families go through. Very wonderful family and keep on fighting Aiden!!!!
My son is currently 4 years old, and he was diagnosed with TSC when he was 6 months old. It was devastating to learn about my son's condition, and at the same time, it was uncertain how his life would be. We continue to help him day by day with whatever comes his way, and currently, we are facing a difficult stage in terms of his behavior, sometimes aggressive and mostly destructive. I came across this video by chance while trying to find out how I can help him understand that he shouldn't do that. :(
I can relate!! Our Son got diagnosed with TSC when 1yr old. Now he is 4. very difficult stage with behavior. Trying to survive and hope for the best each day. It gets very hard at times , especially watching him not being able to keep up with life. Wish we would be in touch with people who understand the struggle without judgement. Wish you all the best
A have this condition a have 2 say a dont have it as bad as some but this broke my heart and a hope people can realise that loads of people struggle with this all over the world and im thankful some people out there have the heart 2 help us😓😊
I also have Tuberous Sclerosis and don't have the condition as severe. My only challenge is difficulty decoding and processing when things are auditorily explained. I do very well with learning through rote memorization, or in other words, repetition of tasks done over and over. Watching this video made my heart sink for this mother. I think about my mom in those days when she was raising me with this disease, and my mom never gave up on me despite being told by our local doctors that I won't be able to have an everyday life and die by adolescence. Here I am, almost thirty years old, and I'm functioning as an average person. I haven't had seizures in 26 years and haven't had new developments grow through continuous monitoring.
@@churrochavez7020 Thank you for the reply. I was on medication until I was weaned off on February 27th, 2010, when the neurologist felt I no longer needed it.
It works 💯 , my step daughter has tuberous sclerosis and until two years ago she had seizures every day , she is now siezure free for over two years , her behavior hasn't improved unfortunately and her cognitive abilities are still impaired , but she is living I believe a much better and above all safer and happier life.
@@churrochavez7020 she is extremely contrary , doesn't seem to comprehend like basic reality , for example for the last two months she's been obsessed with this school she used to go to , she will come home from school upset she didn't go to it , we try to explain she doesn't go to that school anymore and she refuses to listen and just keeps saying her lies that someone told her that she is gonna go she says incoherent things like I'm gonna go the second Monday , she won't listen to reason and then her mom resorts to sometimes agreeing with her story to appease her and then it feels like it's a wheel all over again , she won't do basic manners like asking for things everything she does is like rude ,and it's weird cause usually if someone is mentally disabled I understand not saying things that don't make sense but to always say the rude or bad or contrary thing in every instance , when she can do things like feed herself , clothe herself kind of bath herself her mom has to start the shower and monitor but , I dunno to me it almost seems like a mix of a disability and a ptsd like behavior, im her step dad so i wasnt there 15 years of her life.
@@dust17111right now I'm taking Epidiolex, Keppra, Lamictal, Trileptal and Xcopri and I still have seizures every month. Is she taking other seizure medications with Epidiolex? If so what are those medications?
Has she tried Epidiolex? It's a CBD medication that can make people seizure free. It was approved in 2020 by the FDA for people with Tuberous Sclerosis
Our son had the exact scans. They new something was wrong but didn’t know what. They told us at 26 weeks it was TS. To late to do anything about it. 😭😤 was there any thoughts of termination.?
Speechless. Nobody can understand the struggle of a mother.
This is the 5th time I rewatch this video. Thank you so much for sharing this family's struggle and their awesome fights along with the doctors to make Aiden's life a better one. I'm studying TSC for my neuro exam coming up in med school and this video helps me see what real patients and their families go through.
Very wonderful family and keep on fighting Aiden!!!!
I'm living with a child with TS
Feel free to contact me if you need to know more
I will be doing our journey soon
this is absolutely amazing.😭❤️
Very heartbreaking. Hope all families who are struggling find support
My son is currently 4 years old, and he was diagnosed with TSC when he was 6 months old. It was devastating to learn about my son's condition, and at the same time, it was uncertain how his life would be. We continue to help him day by day with whatever comes his way, and currently, we are facing a difficult stage in terms of his behavior, sometimes aggressive and mostly destructive. I came across this video by chance while trying to find out how I can help him understand that he shouldn't do that. :(
I can relate!! Our Son got diagnosed with TSC when 1yr old. Now he is 4. very difficult stage with behavior. Trying to survive and hope for the best each day. It gets very hard at times , especially watching him not being able to keep up with life. Wish we would be in touch with people who understand the struggle without judgement. Wish you all the best
I feel for you.
My 8 month old son has just been diagnosed with IS. Hoping that the prognosis is not going to devastate my family
Has he tried Epidiolex? It's a CBD medication that can make people seizure free. It was approved in 2020 by the FDA for people with Tuberous Sclerosis
A have this condition a have 2 say a dont have it as bad as some but this broke my heart and a hope people can realise that loads of people struggle with this all over the world and im thankful some people out there have the heart 2 help us😓😊
i speak prayers onto you hope you get well soon❤❤
I also have Tuberous Sclerosis and don't have the condition as severe. My only challenge is difficulty decoding and processing when things are auditorily explained. I do very well with learning through rote memorization, or in other words, repetition of tasks done over and over. Watching this video made my heart sink for this mother. I think about my mom in those days when she was raising me with this disease, and my mom never gave up on me despite being told by our local doctors that I won't be able to have an everyday life and die by adolescence. Here I am, almost thirty years old, and I'm functioning as an average person. I haven't had seizures in 26 years and haven't had new developments grow through continuous monitoring.
@@jacquelinesmith6712what medication are you taking?
@@churrochavez7020 Thank you for the reply. I was on medication until I was weaned off on February 27th, 2010, when the neurologist felt I no longer needed it.
I was on Carbotrol
🙏🏾🙏🏾
Has he tried Epidiolex? It's a CBD medication that can make people seizure free. It was approved in 2020 by the FDA for people with Tuberous Sclerosis
It works 💯 , my step daughter has tuberous sclerosis and until two years ago she had seizures every day , she is now siezure free for over two years , her behavior hasn't improved unfortunately and her cognitive abilities are still impaired , but she is living I believe a much better and above all safer and happier life.
@@churrochavez7020 she is extremely contrary , doesn't seem to comprehend like basic reality , for example for the last two months she's been obsessed with this school she used to go to , she will come home from school upset she didn't go to it , we try to explain she doesn't go to that school anymore and she refuses to listen and just keeps saying her lies that someone told her that she is gonna go she says incoherent things like I'm gonna go the second Monday , she won't listen to reason and then her mom resorts to sometimes agreeing with her story to appease her and then it feels like it's a wheel all over again , she won't do basic manners like asking for things everything she does is like rude ,and it's weird cause usually if someone is mentally disabled I understand not saying things that don't make sense but to always say the rude or bad or contrary thing in every instance , when she can do things like feed herself , clothe herself kind of bath herself her mom has to start the shower and monitor but , I dunno to me it almost seems like a mix of a disability and a ptsd like behavior, im her step dad so i wasnt there 15 years of her life.
@@dust17111right now I'm taking Epidiolex, Keppra, Lamictal, Trileptal and Xcopri and I still have seizures every month. Is she taking other seizure medications with Epidiolex? If so what are those medications?
Hope we have that kind of facility here in the Philippines
My sister has this but we didn't know she had it until she was around 4.
Has she tried Epidiolex? It's a CBD medication that can make people seizure free. It was approved in 2020 by the FDA for people with Tuberous Sclerosis
Our son had the exact scans. They new something was wrong but didn’t know what. They told us at 26 weeks it was TS. To late to do anything about it. 😭😤 was there any thoughts of termination.?
It doesn’t lead to It, but it is an associated finding with TSC
My son has diagnosed tsc when he 6 months old 😭 and seizure everyday
😭😭😭😭
How ms ur son now? My 3years niece also has same condition
@@Euphonious12still seizure
My little brother has this hes 1 year old rn 😩
Has he tried Epidiolex? It's a CBD medication that can make people seizure free. It was approved in 2020 by the FDA for people with Tuberous Sclerosis
🥺😭
My cousin is also suffering from this since last 7 year.Now he is 11 year age.from pakistan any solution of this desease...😢😢😢
Has he tried Epidiolex? It's a CBD medication that can make people seizure free. It was approved in 2020 by the FDA for people with Tuberous Sclerosis
Plz contact me my baby have tuberous sclerosis I am sooooooo worried about that😢
My twins have tsc too
😭😭😭😭🙏🙏🙏🙏 I also have TS !
Me too your not Alone ❤️
My daughter also has tsc i need help as well
Hi
Best to terminate the pregnancy in such cases. Of course, be compassionate with them if they're born.
Yeah it's better to terminate at that stage..