My daughter has the same head drops seizures more than once every day. What do you recomment as medication and diets were not a success. Shall I go for a brain surgery?
@azzoukanourhan My daugther has been helped by a combination of brain surgery, medications, IVIG and ACTH. There hasn't been just one treatment that we found to help her. It has been a combination. She has severe epilepsy and multiple seizure types though so to tease out which treatment is working for each seizure would be impossible.
@azzoukanourhan My daugther has been helped by a combination of brain surgery, medications, IVIG and ACTH. There hasn't been just one treatment that we found to help her. It has been a combination. She has severe epilepsy and multiple seizure types though so to tease out which treatment is working for each seizure would be impossible.
@azzoukanourhan My daugther has been helped by a combination of brain surgery, medications, IVIG and ACTH. There hasn't been just one treatment that we found to help her. It has been a combination. She has severe epilepsy and multiple seizure types though so to tease out which treatment is working for each seizure would be impossible.
@azzoukanourhan My daugther has been helped by a combination of brain surgery, medications, IVIG and ACTH. There hasn't been just one treatment that we found to help her. It has been a combination. She has severe epilepsy and multiple seizure types though so to tease out which treatment is working for each seizure would be impossible.
@azzoukanourhan@azzoukanourhan My daugther has been helped by a combination of brain surgery, medications, IVIG and ACTH. There hasn't been just one treatment that we found to help her. It has been a combination. She has severe epilepsy and multiple seizure types though so to tease out which treatment is working for each seizure would be impossible.
I'm so sorry. I know this doesn't mean anything but I am 41 with no children and had a cat that had seizures. It's very frightening and it was only my cat!!! I can't imagine if it were a child. My prayers are with you.
Writing a research paper now on epilepsy for PHD. At the "atonic" section of my paper. I've had epilepsy since I was in grade school. Never wanted to talk about it, but now I find it fascinating to research it and write about it.
My son also has LGS...he was scheduled for a partial corpus callasotomy back in august but they postponed it because when they did a prolonged VEEG and they saw these exact seizures, they said that they were not Atonics but from everything I have read and seen - these are what atonic seizures look like. I am at a loss as to what to do because we have tried the keto diet 3 times, the modified atkins diet twice and he currently has the vns implanted.
@akababyblue501 So what did they tell you they were? If I remember the timeline correctly - without pulling the video back up, this was done after my daughters complete corpus callosotomy. She did have a return of most of her seizures. They are NOT as severe though. Her callosotomy wasn't a true complete even though they consider it compelte. There is till slightly less than 10% of her collosum in tact.
This is just out of curiosity, but why did the surgeon not do a complete Corpus Callosumectomy? Is there plan for total removal in the future? BTW have watch some of Heather's other video, you have got one very beautiful little girl there! Also, tell Heather I like roller coasters too!
I am an epileptic and have some similar fits to you as well as having several violent fits. Can I ask, do you know you are having them? I rarely know on the bad or the milder ones when I am going to have them or when I am in one.
I'm 13 and I am a girl with severe ADHD that causes tics. It's more common with boys to have ADHD but when girls get it, it's highly severe. Now my condition is not nearly as life-threatning as Heather but you are stong nonetheless. My parents have put me in dance to channel my energy and I'm an actress. There's a boy at my school who has epilepsy. Btw I could hear HM: The Movie in the BG..Put a smile on your face thru the tough times!! :)
Is that not a myoclonic? When my son has a drop his head falls between his legs. My son has Dravets Syndrome and has mutilply daily seizure types. He has myoclonic, drop attacks, absences and tonic clonic.
My daughter has the same head drops seizures more than once every day. What do you recomment as medication and diets were not a success. Shall I go for a brain surgery?
azzoukanourhan 2 months ago
@azzoukanourhan My daugther has been helped by a combination of brain surgery, medications, IVIG and ACTH. There hasn't been just one treatment that we found to help her. It has been a combination. She has severe epilepsy and multiple seizure types though so to tease out which treatment is working for each seizure would be impossible.
Denae1977 2 months ago
@azzoukanourhan My daugther has been helped by a combination of brain surgery, medications, IVIG and ACTH. There hasn't been just one treatment that we found to help her. It has been a combination. She has severe epilepsy and multiple seizure types though so to tease out which treatment is working for each seizure would be impossible.
Denae1977 2 months ago
@azzoukanourhan My daugther has been helped by a combination of brain surgery, medications, IVIG and ACTH. There hasn't been just one treatment that we found to help her. It has been a combination. She has severe epilepsy and multiple seizure types though so to tease out which treatment is working for each seizure would be impossible.
Denae1977 2 months ago
@azzoukanourhan My daugther has been helped by a combination of brain surgery, medications, IVIG and ACTH. There hasn't been just one treatment that we found to help her. It has been a combination. She has severe epilepsy and multiple seizure types though so to tease out which treatment is working for each seizure would be impossible.
Denae1977 2 months ago
@azzoukanourhan @azzoukanourhan My daugther has been helped by a combination of brain surgery, medications, IVIG and ACTH. There hasn't been just one treatment that we found to help her. It has been a combination. She has severe epilepsy and multiple seizure types though so to tease out which treatment is working for each seizure would be impossible.
Denae1977 2 months ago
I'm so sorry. I know this doesn't mean anything but I am 41 with no children and had a cat that had seizures. It's very frightening and it was only my cat!!! I can't imagine if it were a child. My prayers are with you.
dabgr 2 months ago
Cute redhead girl.
Tinkme27 3 months ago
~Sigh~ can those drop attacks effect the whole body mine are like that but only happen once a week
KaisyuVadin 3 months ago
Writing a research paper now on epilepsy for PHD. At the "atonic" section of my paper. I've had epilepsy since I was in grade school. Never wanted to talk about it, but now I find it fascinating to research it and write about it.
DMSteller87 3 months ago
My son also has LGS...he was scheduled for a partial corpus callasotomy back in august but they postponed it because when they did a prolonged VEEG and they saw these exact seizures, they said that they were not Atonics but from everything I have read and seen - these are what atonic seizures look like. I am at a loss as to what to do because we have tried the keto diet 3 times, the modified atkins diet twice and he currently has the vns implanted.
akababyblue501 3 months ago
@akababyblue501 So what did they tell you they were? If I remember the timeline correctly - without pulling the video back up, this was done after my daughters complete corpus callosotomy. She did have a return of most of her seizures. They are NOT as severe though. Her callosotomy wasn't a true complete even though they consider it compelte. There is till slightly less than 10% of her collosum in tact.
Denae1977 3 months ago
Our prayers are with you.
Stevanhale 4 months ago
@Stevanhale Thank you.
Denae1977 4 months ago
My dad had(s) the one when he blurts out crazy unrealistic things funny thing
Thefallengamer636 4 months ago
@Thefallengamer636 What does he say? I guess not too funny.
MSBasic 4 months ago
That must be annoying with her trying to watch TV or whatever she's lookin' at!
FlutterbaiDestiny 4 months ago in playlist More videos from Denae1977
This is just out of curiosity, but why did the surgeon not do a complete Corpus Callosumectomy? Is there plan for total removal in the future? BTW have watch some of Heather's other video, you have got one very beautiful little girl there! Also, tell Heather I like roller coasters too!
PinkSander 4 months ago
Hi Danae1987,
I am an epileptic and have some similar fits to you as well as having several violent fits. Can I ask, do you know you are having them? I rarely know on the bad or the milder ones when I am going to have them or when I am in one.
I wish you well OK?
Take care
mrbluenun
mrbluenun 5 months ago
My poor Red.. Scrappy does the same thing it's heartbreaking to watch
SuperTashaC 9 months ago
I'm 13 and I am a girl with severe ADHD that causes tics. It's more common with boys to have ADHD but when girls get it, it's highly severe. Now my condition is not nearly as life-threatning as Heather but you are stong nonetheless. My parents have put me in dance to channel my energy and I'm an actress. There's a boy at my school who has epilepsy. Btw I could hear HM: The Movie in the BG..Put a smile on your face thru the tough times!! :)
Mad4MileyCyrus 10 months ago
Can I ask does She remember and awake with her drop attacks? Thnx x :)
sexysophxxxx 1 year ago
@sexysophxxxx I don't know that she really remembers anything, but she is awake.
Denae1977 1 year ago
Is that not a myoclonic? When my son has a drop his head falls between his legs. My son has Dravets Syndrome and has mutilply daily seizure types. He has myoclonic, drop attacks, absences and tonic clonic.
AimeeJ1985 1 year ago
dose it hurt her neck?
hemed86 1 year ago
@hemed86 she is unaware of it. If it hurts she hasn't ever complained. It is painful to watch. Especially when they cluster like this.
Denae1977 1 year ago