Is she still having seizures? We just got recommendation for my 8 year old daughter to have this surgery, she doesn't have them all the time but is on 2 different meds that aren't controlling them. Any information would be helpful. Thanks!
my heart is breaking. I cried so hard watching this. My son does the same thing, I have not had him checked yet, but I will soon. Thank you for posting this. Your daughter is so beautiful.
aw....... she's so cute.... I just miss my best friend Dianne Gabrielle... While we were talking and we were going down the stairs, she blanked out and stared so I knew she was gonna have an attack again, I was about to hold her but it was too late, she fell and her head bled. She died and I still blame myself even it was already 3 yrs. ago. I cried those nights.
Hi. I am trying to figure out what is going on with my daughter. We thought it was a seizure, but after having 3 EEGs, MRI, CT the dr. said no. But she spaces out, body jerks a bit, and squints her eyes. Have you seen this before? Can you take a look at my video to see what you think?
I hope your little girl is doing ok. She is very cute.
Hi. I am trying to figure out what is going on with my daughter. We thought it was a seizure, but after having 3 EEGs, MRI, CT the dr. said no. But she spaces out, body jerks a bit, and squints her eyes. Have you seen this before? Can you take a look at my video to see what you think?
I hope your little girl is doing ok. She is very cute.
Sure...I don't mind looking at the video. I can just give you my opinion but if I were you I would also email it to your neurologist and have them see. That is what we do. I have sent the neurologists plenty of videos on Youtube. If she didn't have a seizure during the EEG it may show as normal I think...not sure. She also had a bigger seizure and the other ones are very small and eye blinking or eye closure-left eye.
@amysarahh We're back in hospital,3rd night now. Had another clear EEG, they might do another tomorrow,but she hasnt had any episodes in there. Looks like they will give her MRI on Tues or earlier if any cancellations. Not able to send video now, so far neurologists havent wanted to see videos,might push to show them tomorrow.
She was diagnosed because of CP seizures at 5 months old. They did an MRI and other tests and saw the tubers. They cause the seizures. I found out I had TSC when she was born. I have had very small seizures since I was 18 (now 35) and never knew I had a genetic disorder. My seizures never show on an EEG also. They are always normal. Dr. says they are too deep in the brain. My seizures are a feeling of falling .. ver bad panic. Did she have a brain MRI?
@amysarahh She hasnt had MRI...hoping they might do one when I go back to the neurologist. So far in hosp they didnt see anything themselves, & she'd just had the 1st one I'd noticed (which was a bigger one...think she's been having some smaller ones since then), & because the EEG was fine, they seem to think all is ok. I did too until I started doing some more research. I have a video of what I think is a small seizure...I could email it to you & see what you think? Feel very unsure :(
Sounds like complex partial seizures just like my baby. Probably not TSC though. If you go to the Dr. they will give her an EEG and an MRI and they can see what is happeing.
@amysarahh Thanks for the info, when she was in hospital they gave her an EEG which didnt come up with anything, so I'm left with lots of questions and no answers. How was your child diagnosed?? The neurologists just released her after the EEG was clear and I'm supposed to wait until I have an appointment in a couple more weeks.
@dockerstace...my daughter is now 2 and she has Tuberous Sclerosis Complex that she was diagnosed with at 5 months old because of CP seizures. The started out having a blank stare and her arms shaking. She would look right through you. Went 6 months seizure free and they came back looking a little bit what this little girl is doing. Either blinking her left eye or closing it shut with a grunting noise. Medicine seems to be controlling them now.
Thanks Nogli, much appreciated! No, that does'nt look good then. My son has an eeg in a week, so i'll have my fingers and toes crossed for a positive outcome, but obviously its not looking too good!
Does anyone know if there is a genetic link between complex partial seizures and grand mal/petit mal seizures? My son has possible complex partial seizures, soon to be diagnosed and my mum suffers with grand mal/petit mal. Also her grandad suffered with convulsions, my mum is photo sensitive. Thanks.
@SuperHeidi4 I'm sure it is genetic. Me and my brother both have epilepsy, as does my Dad. THough my dad's and brother's seizures stopped when they were young 'uns, I continue to have partial complex seizures often. So that's not good.
May I ask if you know if she is aware what is going on or is she out of it? I cannot tell if my 21 month old daughter knows what is happening. She closes her left eye shut and grunts. She also does exactly what your daughter is doing at times. New medicine has stopped them (knock on wood) we hope.
@amysarahh Hi, have you had any more diagnosis on your daughter?? Have they said what exactly it is? That sounds very similar to my daughter and I havent really gotten any diagnosis, first episode was 12 days ago, she shuts her right eye, grunts and gets stiff legs, and her arms stiffen up and she seems to dig her right hand into the top of her leg...still no idea what it is that is going on :(
poor girl. i hope for her sake and the sake of your family that they can cure these seizures. have you tried the Ketogenic Diet? or Vagus Nerve Stimulation?
what a precious little girl. I pray she can over come....and I thank god she has good parents like you. May god bless you.
Monicasdestiny 3 weeks ago
i cant say hemispherectomy irl :( sorry but i feel sorry to all those kids who have seizures :( shes so cute
lollipwop703 4 months ago 2
poor sweat little thing. I hope she get well. My best wishes.
fadilto 5 months ago
Is she still having seizures? We just got recommendation for my 8 year old daughter to have this surgery, she doesn't have them all the time but is on 2 different meds that aren't controlling them. Any information would be helpful. Thanks!
Coppedge05 7 months ago
my heart is breaking. I cried so hard watching this. My son does the same thing, I have not had him checked yet, but I will soon. Thank you for posting this. Your daughter is so beautiful.
elysegarrison 9 months ago 3
@elysegarrison hope all is ok with your son. you are both in my thoughts.
Ianjcarroll 5 months ago
These girls are both too cute in their jammies <3 <3 <3
dars2607 10 months ago 4
Aww bless her cotton socks, she's so cute xx
HopeLouiize 1 year ago
aw....... she's so cute.... I just miss my best friend Dianne Gabrielle... While we were talking and we were going down the stairs, she blanked out and stared so I knew she was gonna have an attack again, I was about to hold her but it was too late, she fell and her head bled. She died and I still blame myself even it was already 3 yrs. ago. I cried those nights.
rockishEMOgurl 1 year ago 3
@rockishEMOgurl i'm so sorry..
Alex82497 7 months ago
@rockishEMOgurl Oh, I am so sorry. She will always exist, however, in your hart.
I sound like a retarded psycologist >:|
starflash12345 3 months ago
@rockishEMOgurl Oh wow, I'm so sorry for your loss, I can't even imagine losing a friend like that...
EliasOwnage95 2 months ago
@rockishEMOgurl GOOD!!!!!! Go fucking kill yourself, murderer!
OneHugeKegParty 1 month ago
She is too cute!!! Praying for her and your family!!
sugarfaye03 1 year ago
I have these type and if they are similar to mine, they do not hurt. You cannot even feel anything or remember anything afterwards.
LauraLea38 1 year ago
poor baby, god bless her <3
luvfunnyflix 1 year ago
Was it a complete right hemispherectomy?
tydees 1 year ago
Poor little angel. She looked like she was fighting it really well, and waiting for the opportunity to sink safely into mums lap.
YoureGuilty 1 year ago
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Hi. I am trying to figure out what is going on with my daughter. We thought it was a seizure, but after having 3 EEGs, MRI, CT the dr. said no. But she spaces out, body jerks a bit, and squints her eyes. Have you seen this before? Can you take a look at my video to see what you think?
I hope your little girl is doing ok. She is very cute.
.
nportwood12 1 year ago
Hi. I am trying to figure out what is going on with my daughter. We thought it was a seizure, but after having 3 EEGs, MRI, CT the dr. said no. But she spaces out, body jerks a bit, and squints her eyes. Have you seen this before? Can you take a look at my video to see what you think?
I hope your little girl is doing ok. She is very cute.
.
nportwood12 1 year ago
why did she had to undergo an hemispherectomy? anyway, so cute...
ragazzaimpaurita86 1 year ago
She is so cute!
hifiguy9 1 year ago 10
Sure...I don't mind looking at the video. I can just give you my opinion but if I were you I would also email it to your neurologist and have them see. That is what we do. I have sent the neurologists plenty of videos on Youtube. If she didn't have a seizure during the EEG it may show as normal I think...not sure. She also had a bigger seizure and the other ones are very small and eye blinking or eye closure-left eye.
amysarahh 1 year ago
@amysarahh We're back in hospital,3rd night now. Had another clear EEG, they might do another tomorrow,but she hasnt had any episodes in there. Looks like they will give her MRI on Tues or earlier if any cancellations. Not able to send video now, so far neurologists havent wanted to see videos,might push to show them tomorrow.
dockerstace 1 year ago
She was diagnosed because of CP seizures at 5 months old. They did an MRI and other tests and saw the tubers. They cause the seizures. I found out I had TSC when she was born. I have had very small seizures since I was 18 (now 35) and never knew I had a genetic disorder. My seizures never show on an EEG also. They are always normal. Dr. says they are too deep in the brain. My seizures are a feeling of falling .. ver bad panic. Did she have a brain MRI?
amysarahh 1 year ago
@amysarahh She hasnt had MRI...hoping they might do one when I go back to the neurologist. So far in hosp they didnt see anything themselves, & she'd just had the 1st one I'd noticed (which was a bigger one...think she's been having some smaller ones since then), & because the EEG was fine, they seem to think all is ok. I did too until I started doing some more research. I have a video of what I think is a small seizure...I could email it to you & see what you think? Feel very unsure :(
dockerstace 1 year ago
Sounds like complex partial seizures just like my baby. Probably not TSC though. If you go to the Dr. they will give her an EEG and an MRI and they can see what is happeing.
amysarahh 1 year ago
@amysarahh Thanks for the info, when she was in hospital they gave her an EEG which didnt come up with anything, so I'm left with lots of questions and no answers. How was your child diagnosed?? The neurologists just released her after the EEG was clear and I'm supposed to wait until I have an appointment in a couple more weeks.
dockerstace 1 year ago
@dockerstace...my daughter is now 2 and she has Tuberous Sclerosis Complex that she was diagnosed with at 5 months old because of CP seizures. The started out having a blank stare and her arms shaking. She would look right through you. Went 6 months seizure free and they came back looking a little bit what this little girl is doing. Either blinking her left eye or closing it shut with a grunting noise. Medicine seems to be controlling them now.
amysarahh 1 year ago
Thanks Nogli, much appreciated! No, that does'nt look good then. My son has an eeg in a week, so i'll have my fingers and toes crossed for a positive outcome, but obviously its not looking too good!
SuperHeidi4 1 year ago
Does anyone know if there is a genetic link between complex partial seizures and grand mal/petit mal seizures? My son has possible complex partial seizures, soon to be diagnosed and my mum suffers with grand mal/petit mal. Also her grandad suffered with convulsions, my mum is photo sensitive. Thanks.
SuperHeidi4 1 year ago
@SuperHeidi4 I'm sure it is genetic. Me and my brother both have epilepsy, as does my Dad. THough my dad's and brother's seizures stopped when they were young 'uns, I continue to have partial complex seizures often. So that's not good.
Nogli 1 year ago
fucking god , why the hell do u create something like this.
mrMein 1 year ago
I hope she improves. A lot to go through.
sandcastlekiller 1 year ago
that is probably a simple partial seizure b/c I think she is responsive, or could be responsive.
zivarik 1 year ago
May I ask if you know if she is aware what is going on or is she out of it? I cannot tell if my 21 month old daughter knows what is happening. She closes her left eye shut and grunts. She also does exactly what your daughter is doing at times. New medicine has stopped them (knock on wood) we hope.
amysarahh 1 year ago
@amysarahh Hi, have you had any more diagnosis on your daughter?? Have they said what exactly it is? That sounds very similar to my daughter and I havent really gotten any diagnosis, first episode was 12 days ago, she shuts her right eye, grunts and gets stiff legs, and her arms stiffen up and she seems to dig her right hand into the top of her leg...still no idea what it is that is going on :(
dockerstace 1 year ago
oh bless she is absolutly gorgeous!
do they hurt her?
x
candygurlxx 1 year ago
@candygurlxx I've been having these seizures for a few years now and they don't hurt. xx
MrsAriaElizabeth 1 year ago
oh she is just so cute god bless her and her family!
Kissimii 1 year ago
A hemispherectomy is when a hemisphere of the brain is removed.
switch3453 1 year ago
what are hemispherectomy?
monjanse 1 year ago
Oh I know what it is, Cause I have the same problem?? Do you take something for treatmaent?
ajalore 1 year ago
poor girl. i hope for her sake and the sake of your family that they can cure these seizures. have you tried the Ketogenic Diet? or Vagus Nerve Stimulation?
ps. those are cute dora PJs. lol just had to say
crazychick10793 2 years ago
Poor mite. How is she now?
GuyMagicFingers 2 years ago
Hey hope they get her seizures under control :-) I started taking CP seizures wen i was 7 n im 18 now still avin dem lol
PortavogieAngel91 2 years ago
ahhh so sweet. I hope they can control this
cherchee 2 years ago
What a pretty little girl :) very pretty.. poor thing
MsWednesday13 2 years ago
Pobre verdaderamente yo se lo que es eso, pro como clinicamente lo identificaron?
ajalore 2 years ago
ella no habla espanol
kdawgfoeva 1 year ago