i agree with everything you said. i found out i have ACC in my 40's. finding this out later in life, shows that you can have a normal life depending on how it affects the rest of the brain. i did over 20 yrs of military service, so, do not let this diagnosis let you walk on eggshells with your loved ones, help them to have as normal a life as possible
That's encouraging to read Richard. I have a newborn son that's been diagnosed with ACC, thankfully that's it so far. Your comment gave me a boost, thank you
This is what I needed so bad to hear, I have a 10 month old child with ACC and most of the doctors don’t explain what to expect or what to do rather than just therapy
I don’t too often anymore. I am just too busy all day and by the time I get my kids to bed I just want to relax on the couch. I will try to start back up though soon, hopefully
It is possible, yes. Depending on what stage of development it is it can be hard to see. With our first daughter we got lucky and got a clear shot of it. With our second daughter they said they couldn’t see it due to development stage and her not being at the right angle. We had to go extra times just to try and catch a glimpse of it. They even went as far as saying that she might have Downs Syndrome because they couldn’t see it. But she does not have that. The best thing to do is to have an MRI done the day the baby is born to see the corpus Callosum area clearly. That’s what we did (they gave her a bottle and taped a pacifier to her mouth. She was never under any drugs. She slept through the whole thing!) we were able to confirm that she has isolated complete ACC and no other abnormalities. Hope this helps!! Also, just a tip since you are a new parent to this. The ventricle levels in an ACC is higher then a normal brain, but it’s our “normal”. Keep an eye on the levels if they keep going up, shunts may be needed in the future. If they “level off”, (my daughters levels are 17 and 21. They stopped going up while in utero), there should be no reason to keep checking them.
The corpus Callosum should be developed by 20 weeks if it is there. The brain is one of the earliest this to form during pregnancy. So if they had a clear view and don’t see it there’s a high chance it really isn’t there. Most doctors are still unfamiliar or inexperienced with ACC as a disorder and will aide on the side of caution if they aren’t seeing it. So your radiologist might think he isn’t getting a good picture when in reality it just isn’t there.
@@LivingwithACC I'm from Spain. My OBGYN told me my baby had ACC at 20 weeks. Every doctor told me it was best to terminate pregnancy, because our son wouldn't be able to live. So we did. Now, 4 months later, I just found your channel and I feel awful. How can I trust a doctor now?
Mam I am a pregnant women.in my 8th month usg my baby have lateral ventricle dialation and ACC.please help us to know more about this situation and it's management.iam a physiotherapist. How can I help my child to improve quality of life and overcome difficulties associated with this situation.please give me reply ..
Hi Raniya, I sent you an email. If you have any more questions, please feel free to always reach out to me directly or to the NODCC (who will be contacting you by email either today or tomorrow). I am always happy to help.
Hi mam! My son is diagnosed with diffuse corpus callosum atrophy at the age of 1ys. He Didt have seizures but now he is 2yrs not able to sit by his own, eat or talk. He has extreme development delay. We are giving therapies and doing all the possible things. Upto ur knowledge how long it may take for a baby to catch up their milestones?
My 20 yr old daughter has PACC and just moved into her first apartment😊 My daughter starts college in August
Thank you so much for this video. We found out when my daughter was 6. And all those thoughts went through my head. But she's doing great!
i agree with everything you said. i found out i have ACC in my 40's. finding this out later in life, shows that you can have a normal life depending on how it affects the rest of the brain. i did over 20 yrs of military service, so, do not let this diagnosis let you walk on eggshells with your loved ones, help them to have as normal a life as possible
Sir please call mee.pandurang khune form .india
That's encouraging to read Richard. I have a newborn son that's been diagnosed with ACC, thankfully that's it so far. Your comment gave me a boost, thank you
This is what I needed so bad to hear, I have a 10 month old child with ACC and most of the doctors don’t explain what to expect or what to do rather than just therapy
Thanks thanks for share your story!! U give me hope!
You have it ?
i have baby like this its so scary .im very worried. thaks for this video .
Do you broadcast anymore..if so..Where??
I don’t too often anymore. I am just too busy all day and by the time I get my kids to bed I just want to relax on the couch. I will try to start back up though soon, hopefully
Sure! Ask away 😁
It is possible, yes. Depending on what stage of development it is it can be hard to see. With our first daughter we got lucky and got a clear shot of it. With our second daughter they said they couldn’t see it due to development stage and her not being at the right angle. We had to go extra times just to try and catch a glimpse of it. They even went as far as saying that she might have Downs Syndrome because they couldn’t see it. But she does not have that. The best thing to do is to have an MRI done the day the baby is born to see the corpus Callosum area clearly. That’s what we did (they gave her a bottle and taped a pacifier to her mouth. She was never under any drugs. She slept through the whole thing!) we were able to confirm that she has isolated complete ACC and no other abnormalities. Hope this helps!! Also, just a tip since you are a new parent to this. The ventricle levels in an ACC is higher then a normal brain, but it’s our “normal”. Keep an eye on the levels if they keep going up, shunts may be needed in the future. If they “level off”, (my daughters levels are 17 and 21. They stopped going up while in utero), there should be no reason to keep checking them.
The corpus Callosum should be developed by 20 weeks if it is there. The brain is one of the earliest this to form during pregnancy. So if they had a clear view and don’t see it there’s a high chance it really isn’t there. Most doctors are still unfamiliar or inexperienced with ACC as a disorder and will aide on the side of caution if they aren’t seeing it. So your radiologist might think he isn’t getting a good picture when in reality it just isn’t there.
@@LivingwithACC I'm from Spain. My OBGYN told me my baby had ACC at 20 weeks. Every doctor told me it was best to terminate pregnancy, because our son wouldn't be able to live. So we did. Now, 4 months later, I just found your channel and I feel awful. How can I trust a doctor now?
Mam I am a pregnant women.in my 8th month usg my baby have lateral ventricle dialation and ACC.please help us to know more about this situation and it's management.iam a physiotherapist. How can I help my child to improve quality of life and overcome difficulties associated with this situation.please give me reply ..
Hi Raniya, I sent you an email. If you have any more questions, please feel free to always reach out to me directly or to the NODCC (who will be contacting you by email either today or tomorrow). I am always happy to help.
Hi mam!
My son is diagnosed with diffuse corpus callosum atrophy at the age of 1ys. He Didt have seizures but now he is 2yrs not able to sit by his own, eat or talk. He has extreme development delay. We are giving therapies and doing all the possible things. Upto ur knowledge how long it may take for a baby to catch up their milestones?
Im 20 years old with acc, can i email you? I have some questions if thats okay?
Sure! I am happy to answer any questions you have. You can email me at livingwithacc@gmail.com
I’m a grandma freaking out😢