As sad as these sort of videos are, I believe that they are important because such children can teach us that although life may not be easy for many of us who view--I am bipolar myself--that many out there just want to be loved and would love ( for example) a day without seizures. These parents are heroes and these children are teachers...I pray for a cure for her illness xoxo
@TheGuineagirl101 Thank you for your support with this comment. It means a lot. I decided to delete the previous comment stating that posting this video is not helping anyone, because that is clearly not true. I've received countless e-mail messages telling me how helpful our videos have been to parents trying to understand what is happening with their own children. I, too, hope that a cure is soon for all neurological conditions. Thank you again!
I had never seen this Video before. But I just wanted to tell you this is exactly type of seizure type that our children with CDKL5 have. They dont even have to have the Infantile Spasms Hypps. Amber didnt have IS, and others I have seen in person dont. But it is believed to be specific to CDKL5. She is such a little doll, I am glad little Zoe is getting some relief with the Keto diet. Much love to you all
@carolanne37 Indeed, Zoe's seizures were totally undetectable on an EEG up to about this age (14 months). But a few weeks after this video was shot, she did the 24 hour EEG again (4th one), and that time the hypsarrhythmia was there and detectable all of a sudden. But now at age 3.5, her EEG no longer shows this, though it is not normal either. Typical of CDKL5 children, her EEG does not show a clear focus or any data that Neurologists know what to do with.
@MasterDino3 Yes, things are better. Seizures of this severity are now gone thanks to a treatment called the Ketogenic Diet. Our lives will always be difficult, as we now know Zoe has a genetic disorder called CDKL5 and this disorder currently has no treatment or cure. She will remain extremely developmentally challenged, but she's a super sweet girl and we just shower her with love, and that seems to make her content. She works hard, and I believe someday she will even walk and communicate. :-)
@TheShasiti We now know that she suffers from a very rare genetic disorder called CDKL5. On the positive side, seizures of this magnitude are no more, thanks to something called the Ketogenic Diet. While she still has small 1 second "drop" seizures from time to time, they are nothing like this. As for her other development, she will always be developmentally a baby or toddler, unless a treatment is someday found. We fight hard for her and hope to get her walking and communicating someday soon.
The liquid comin from her mouth maybe formula, while havin seizures ppl tend to throw up, or have other accidents... i have a seizure disorder, and have puked several times.. i feel for tat little gurl
@xxxAlphaxxx5 Don't worry - we had just given her some Mylanta for her tummy and she hadn't had a chance to swallow it when this started. She was not foaming or anything. But it was a truly terrible seizure. Rest assured that seizures of this severity are now gone thanks to a treatment called the Ketogenic Diet.
@gloriass777 Back when she was having seizures this severe, she would usually go to sleep when they were over because she was exhausted. But I won't lie - there were times she'd jerk in her sleep and I'd wonder if they ever ended. Things are thankfully different now - the Ketogenic Diet took seizures of this severity away. And if she ever has the odd breakthrough that approaches this severity (has only happened a couple of times) we are now able to stop those quickly with a rescue medicine.
Had she been born long ago, they would have thought of it as a possession by the devil and she would have been exorcized or worse. Although we've evolved since then, doesn't seem to change the reality of her horrific suffering. Never saw anything to this degree of pain in my life, as if some ghost was beating her up. I can't believe her parents can deal with her torture without going insane.
@janineaaaaaaa Well, the good news is that we live in the 21st century in the free world, so she has not had any exorcisms performed on her. :-) You're absolutely correct that it always looked like a ghost was beating her up. It is EXTREMELY hard to deal with, but we just do because she's our daughter and she deserves everything we can give. That said, we now have better control of Zoe's epilepsy symptoms and these giant seizures are no more.
Lord,please lift zoe and her family up to you Lord let your love and healing come to them.You are the great Healer and with You all is possible'Please Lord she is child suffering so much and You said in the Bible 'Come to Me all who is heavy burden and I will give thee rest.Please help this family.Thank You Jesus Amen and Amen.Iam sorry if I offend you with this prayer But I had a strong feeling to do this.Whenever 2 or more gather in His name there is Love
@leverymerica These turned out to be full blown seizures. Since this video, Zoe is now obviously nearly 2 years older, and we have learned that she has a rare genetic disorder called CDKL5. Google it if you're interested in more info. The good news is that we have much better control of her seizures now, thanks to the Ketogenic Diet. She still has very tiny seizures (comparatively) and probably always will, but we have not seen a seizure of this severity since 2009.
hola talbes no me entiendas pero siento mucho ke tu baby tenga eso yo tengo un niño reciente mente diagnosticado con epilepzia pero los neurolos lo pusieron en un medicamento ke se llama TOPAMAX esta ayudandole mucho espero ke tu bebe mejore GOD BLEES YOU
Please keep us posted, I have been following your daughter's story and praying for some answers and for her not to be in pain anymore. I will continue to keep her and your family in my thoughts. I hope and pray they can find the root cause and help her!
Please keep us posted, I have been following your daughter's story and praying for some answers and for her not to be in pain anymore. I will continue to keep her and your family in my thoughts. I hope and pray they can find the root cause and help her!
I'm sorry that it took so long to be diagnosed and have her in so much discomfort. The drs should have tried anti-epileptic meds during that time. they use them for severe cases of myoclonus, which should have been her dx without eeg activity. I am glad you are on the right track with meds/diet and trying to figure the cause. has she has been tested for all of the rare metabolic disorders? the lysine deficiency disorders can present with IS, brain changes and developmental regression
I'm so sorry your daughter has to go through this. I am having a hard time getting my daughter diagnoised with some sort of seizure disorder. Zoe's symptoms look alot like my daughters. My daughter also has a rare genetic disorder. I hope that you can find a medicine that works for her. Have you tried ATCH. I belong to a infantile spasm group and alot of parents go with this treatment.
@amiemiceli It took us 1.5 years to even get someone to say for sure these were seizures (we now know it's Infantile Spasms), so we didn't start the real anti-seizure tactics until about 6 months ago. We tried Sabril/Vigabatrin at all levels, but it didn't hold. We're currently trying the Ketogenic diet, which is doing better than Sabril did. ACTH will be next if this fails. They now suspect she has Rett Syndrome or mitochondrial disease based on suddenly abnormal white matter on a recent MRI.
It pains me to see your daughter suffer being so young. I kept thinking while watching the video that she was indeed having seizures--I have seen a previous vid of yourl daughter and read that she didnt- and Now I read your Update and it said that she now does!
My niece has epilepsy she's 4.5 and is because she has Mito disease-she's 4.5 yrs old and since age 1 on the Ketogenic Diet-her seizures began @ 5 mos-there's been a huge improvement!! Together w/meds and the diet she's OK!
@mnat28 Thank you so much. There have been changes in Zoe's MRI recently, particularly in her white matter, which indicate a pretty high likelihood of a mitochondrial disorder or similar. We're on the search to try and figure that part out. And, like your niece, Zoe is now on the Ketogenic Diet. It wasn't working at first, but we've been taking away her other medicines lately, and that has really helped. We're optimistic about the big reduction in seizures we're seeing lately. :-)
@dirtyelectronic Im very glad her seizures have reduced!! Yea the Ketogenic diet is very hard at the beginning- and one must stick to it 110% in order for it to work.! We've seen that!! And as for Mito-I believe one of the test is a skin graf done on the thigh-for the test. If she has Mito then they'll be able to understand her condition better and work with it. It's a complicated disorder and in every child is different-but when there's a diagnosis-things are always better! God bless!
my 8 year old daughter has episodes similar to this only not quite as bad, hers only happen at night. it wakes her up and her stomach muscles tense up and she vomits usualy several times and her pupils are also usualy dialated after the episodes, also she tends to mumble and has no sence of anything that is or has happend. i too also had the cat mri pet and eeg tests done and yielded no results. she has been having then for almost 6 years now and no meds have seemed to help either.
@LikuidKandy I'm sorry to hear about your daughter's suffering. I would wish this stuff on no child. What medicines have you tried? We've had little success with meds too, but a slight improvement on Sabril (Vigabatrin), which has reduced the severity a bit. We're now just starting the Ketogenic diet through our local hospital. We're very hopeful about this treatment, as it has helped a lot of kids with episodes such as these that are unresponsive to medicines.
Yes, we finally now know that they are. However, no EEG (including 24 hour video which did capture several events) ever revealed any abnormalities. Nor was their anything wrong with her CAT, MRI, or PET. We even tried anti-seizure meds just in case. No effect. However, after a massive regression just a few weeks after this video, we had yet another 24 hour EEG. It revealed Infantile Spasms. It is still unresponsive to medicines. Why it did not show up as spasms sooner, we may never know.
Yes, we finally now know that they are. However, no EEG (including 24 hour video which did capture several events) ever revealed any abnormalities. Nor was their anything wrong with her CAT, MRI, or PET. We even tried anti-seizure meds just in case. No effect. However, after a massive regression just a few weeks after this video, we had yet another 24 hour EEG. It revealed Infantile Spasms. It is still unresponsive to medicines. Why it did not show up as spasms sooner, we may never know.
Yes, we finally now know that they are. However, no EEG (including 24 hour video which did capture several events) ever revealed any abnormalities. Nor was their anything wrong with her CAT, MRI, or PET. We even tried anti-seizure meds just in case. No effect. However, after a massive regression just a few weeks after this video, we had yet another 24 hour EEG. It revealed Infantile Spasms. It is still unresponsive to medicines. Why it did not show up as spasms sooner, we may never know.
I can't believe they eliminated ifantile spasms on EEG, her actions are EXACTLY like those with infantile spasms. It is also very obvious she is in a lot of pain and discomfort. Poor, precious little girl...I'll be keeping her and your family in my thoughts and prayers.
Yes, we finally now know that they are. However, no EEG (including 24 hour video which did capture several events) ever revealed any abnormalities. Nor was their anything wrong with her CAT, MRI, or PET. We even tried anti-seizure meds just in case. No effect. However, after a massive regression just a few weeks after this video, we had yet another 24 hour EEG. It revealed Infantile Spasms. It is still unresponsive to medicines. Why it did not show up as spasms sooner, we may never know.
Yes, we finally now know that they are. However, no EEG (including 24 hour video which did capture several events) ever revealed any abnormalities. Nor was their anything wrong with her CAT, MRI, or PET. We even tried anti-seizure meds just in case. No effect. However, after a massive regression just a few weeks after this video, we had yet another 24 hour EEG. It revealed Infantile Spasms. It is still unresponsive to medicines. Why it did not show up as spasms sooner, we may never know.
this made me in tears....it so sad to look at her like this:(i hope she will be cure soon and with God's help...
TheSummersheen 1 month ago
poor sweetie My daughter has IS its so sad you feel helpless (((hugs)))
coyote70k 1 month ago
As sad as these sort of videos are, I believe that they are important because such children can teach us that although life may not be easy for many of us who view--I am bipolar myself--that many out there just want to be loved and would love ( for example) a day without seizures. These parents are heroes and these children are teachers...I pray for a cure for her illness xoxo
TheGuineagirl101 1 month ago
@TheGuineagirl101 Thank you for your support with this comment. It means a lot. I decided to delete the previous comment stating that posting this video is not helping anyone, because that is clearly not true. I've received countless e-mail messages telling me how helpful our videos have been to parents trying to understand what is happening with their own children. I, too, hope that a cure is soon for all neurological conditions. Thank you again!
dirtyelectronic 1 month ago
I had never seen this Video before. But I just wanted to tell you this is exactly type of seizure type that our children with CDKL5 have. They dont even have to have the Infantile Spasms Hypps. Amber didnt have IS, and others I have seen in person dont. But it is believed to be specific to CDKL5. She is such a little doll, I am glad little Zoe is getting some relief with the Keto diet. Much love to you all
carolanne37 2 months ago
@carolanne37 Indeed, Zoe's seizures were totally undetectable on an EEG up to about this age (14 months). But a few weeks after this video was shot, she did the 24 hour EEG again (4th one), and that time the hypsarrhythmia was there and detectable all of a sudden. But now at age 3.5, her EEG no longer shows this, though it is not normal either. Typical of CDKL5 children, her EEG does not show a clear focus or any data that Neurologists know what to do with.
dirtyelectronic 1 month ago
Poor little chick! Hope things are a lot better for her (and you) now...
MasterDino3 5 months ago
@MasterDino3 Yes, things are better. Seizures of this severity are now gone thanks to a treatment called the Ketogenic Diet. Our lives will always be difficult, as we now know Zoe has a genetic disorder called CDKL5 and this disorder currently has no treatment or cure. She will remain extremely developmentally challenged, but she's a super sweet girl and we just shower her with love, and that seems to make her content. She works hard, and I believe someday she will even walk and communicate. :-)
dirtyelectronic 3 months ago 2
I know this is a terible question to ask, but what is her prognosis long term?
TheShasiti 6 months ago
@TheShasiti We now know that she suffers from a very rare genetic disorder called CDKL5. On the positive side, seizures of this magnitude are no more, thanks to something called the Ketogenic Diet. While she still has small 1 second "drop" seizures from time to time, they are nothing like this. As for her other development, she will always be developmentally a baby or toddler, unless a treatment is someday found. We fight hard for her and hope to get her walking and communicating someday soon.
cosmicity 3 months ago 2
The liquid comin from her mouth maybe formula, while havin seizures ppl tend to throw up, or have other accidents... i have a seizure disorder, and have puked several times.. i feel for tat little gurl
eeyoreblue2910 6 months ago
Sorry to ask this way but may i know what is the white liquid coming out from her mouth ?
xxxAlphaxxx5 6 months ago
@xxxAlphaxxx5 Don't worry - we had just given her some Mylanta for her tummy and she hadn't had a chance to swallow it when this started. She was not foaming or anything. But it was a truly terrible seizure. Rest assured that seizures of this severity are now gone thanks to a treatment called the Ketogenic Diet.
dirtyelectronic 3 months ago
How do you know when her episodes end?
gloriass777 8 months ago
@gloriass777 Back when she was having seizures this severe, she would usually go to sleep when they were over because she was exhausted. But I won't lie - there were times she'd jerk in her sleep and I'd wonder if they ever ended. Things are thankfully different now - the Ketogenic Diet took seizures of this severity away. And if she ever has the odd breakthrough that approaches this severity (has only happened a couple of times) we are now able to stop those quickly with a rescue medicine.
dirtyelectronic 3 months ago
Had she been born long ago, they would have thought of it as a possession by the devil and she would have been exorcized or worse. Although we've evolved since then, doesn't seem to change the reality of her horrific suffering. Never saw anything to this degree of pain in my life, as if some ghost was beating her up. I can't believe her parents can deal with her torture without going insane.
janineaaaaaaa 9 months ago
@janineaaaaaaa Well, the good news is that we live in the 21st century in the free world, so she has not had any exorcisms performed on her. :-) You're absolutely correct that it always looked like a ghost was beating her up. It is EXTREMELY hard to deal with, but we just do because she's our daughter and she deserves everything we can give. That said, we now have better control of Zoe's epilepsy symptoms and these giant seizures are no more.
dirtyelectronic 9 months ago
Lord,please lift zoe and her family up to you Lord let your love and healing come to them.You are the great Healer and with You all is possible'Please Lord she is child suffering so much and You said in the Bible 'Come to Me all who is heavy burden and I will give thee rest.Please help this family.Thank You Jesus Amen and Amen.Iam sorry if I offend you with this prayer But I had a strong feeling to do this.Whenever 2 or more gather in His name there is Love
msdawnjay56 10 months ago 2
how is she doing??
plushbanana 1 year ago
it's scary that she's frothing at the mouth and turning blue. must be really frustrating for her. how is something like this caused?
leverymerica 1 year ago
@leverymerica These turned out to be full blown seizures. Since this video, Zoe is now obviously nearly 2 years older, and we have learned that she has a rare genetic disorder called CDKL5. Google it if you're interested in more info. The good news is that we have much better control of her seizures now, thanks to the Ketogenic Diet. She still has very tiny seizures (comparatively) and probably always will, but we have not seen a seizure of this severity since 2009.
dirtyelectronic 9 months ago
She's so beautiful, sorry you all have to go through this... innocent little girl! She should be playing and having fun!
Poofacespectacular 1 year ago
poor baby, how is her development otherwise?
kimklingler007 1 year ago
hola talbes no me entiendas pero siento mucho ke tu baby tenga eso yo tengo un niño reciente mente diagnosticado con epilepzia pero los neurolos lo pusieron en un medicamento ke se llama TOPAMAX esta ayudandole mucho espero ke tu bebe mejore GOD BLEES YOU
edith478 1 year ago
LOL funny vid
freddythecanine 1 year ago
@freddythecanine What is wrong with you???
gloriass777 3 months ago
Please keep us posted, I have been following your daughter's story and praying for some answers and for her not to be in pain anymore. I will continue to keep her and your family in my thoughts. I hope and pray they can find the root cause and help her!
lawofjude 1 year ago
Please keep us posted, I have been following your daughter's story and praying for some answers and for her not to be in pain anymore. I will continue to keep her and your family in my thoughts. I hope and pray they can find the root cause and help her!
lawofjude 1 year ago
I'm sorry that it took so long to be diagnosed and have her in so much discomfort. The drs should have tried anti-epileptic meds during that time. they use them for severe cases of myoclonus, which should have been her dx without eeg activity. I am glad you are on the right track with meds/diet and trying to figure the cause. has she has been tested for all of the rare metabolic disorders? the lysine deficiency disorders can present with IS, brain changes and developmental regression
alisonamsb 1 year ago
I'm so sorry your daughter has to go through this. I am having a hard time getting my daughter diagnoised with some sort of seizure disorder. Zoe's symptoms look alot like my daughters. My daughter also has a rare genetic disorder. I hope that you can find a medicine that works for her. Have you tried ATCH. I belong to a infantile spasm group and alot of parents go with this treatment.
amiemiceli 1 year ago
@amiemiceli It took us 1.5 years to even get someone to say for sure these were seizures (we now know it's Infantile Spasms), so we didn't start the real anti-seizure tactics until about 6 months ago. We tried Sabril/Vigabatrin at all levels, but it didn't hold. We're currently trying the Ketogenic diet, which is doing better than Sabril did. ACTH will be next if this fails. They now suspect she has Rett Syndrome or mitochondrial disease based on suddenly abnormal white matter on a recent MRI.
dirtyelectronic 1 year ago
It pains me to see your daughter suffer being so young. I kept thinking while watching the video that she was indeed having seizures--I have seen a previous vid of yourl daughter and read that she didnt- and Now I read your Update and it said that she now does!
My niece has epilepsy she's 4.5 and is because she has Mito disease-she's 4.5 yrs old and since age 1 on the Ketogenic Diet-her seizures began @ 5 mos-there's been a huge improvement!! Together w/meds and the diet she's OK!
Good Luck!!
mnat28 1 year ago
@mnat28 Thank you so much. There have been changes in Zoe's MRI recently, particularly in her white matter, which indicate a pretty high likelihood of a mitochondrial disorder or similar. We're on the search to try and figure that part out. And, like your niece, Zoe is now on the Ketogenic Diet. It wasn't working at first, but we've been taking away her other medicines lately, and that has really helped. We're optimistic about the big reduction in seizures we're seeing lately. :-)
dirtyelectronic 1 year ago
@dirtyelectronic Im very glad her seizures have reduced!! Yea the Ketogenic diet is very hard at the beginning- and one must stick to it 110% in order for it to work.! We've seen that!! And as for Mito-I believe one of the test is a skin graf done on the thigh-for the test. If she has Mito then they'll be able to understand her condition better and work with it. It's a complicated disorder and in every child is different-but when there's a diagnosis-things are always better! God bless!
mnat28 1 year ago
I'm so sorry Zoe is going through this, but glad you finally have some answers. My thoughts are with you and your family.
indayloveschocolate 1 year ago
@indayloveschocolate Thank you very much. We really appreciate it. :-)
dirtyelectronic 1 year ago
thanks for the quick response
rslnvss 1 year ago
my 8 year old daughter has episodes similar to this only not quite as bad, hers only happen at night. it wakes her up and her stomach muscles tense up and she vomits usualy several times and her pupils are also usualy dialated after the episodes, also she tends to mumble and has no sence of anything that is or has happend. i too also had the cat mri pet and eeg tests done and yielded no results. she has been having then for almost 6 years now and no meds have seemed to help either.
LikuidKandy 1 year ago
@LikuidKandy I'm sorry to hear about your daughter's suffering. I would wish this stuff on no child. What medicines have you tried? We've had little success with meds too, but a slight improvement on Sabril (Vigabatrin), which has reduced the severity a bit. We're now just starting the Ketogenic diet through our local hospital. We're very hopeful about this treatment, as it has helped a lot of kids with episodes such as these that are unresponsive to medicines.
dirtyelectronic 1 year ago
these look like classic myoclonic infantile spasams
rslnvss 2 years ago
Yes, we finally now know that they are. However, no EEG (including 24 hour video which did capture several events) ever revealed any abnormalities. Nor was their anything wrong with her CAT, MRI, or PET. We even tried anti-seizure meds just in case. No effect. However, after a massive regression just a few weeks after this video, we had yet another 24 hour EEG. It revealed Infantile Spasms. It is still unresponsive to medicines. Why it did not show up as spasms sooner, we may never know.
dirtyelectronic 2 years ago
I'm in tears watching this poor baby.She is so beautiful.I hope the cause has now been found.
5566Trish 2 years ago
Yes, we finally now know that they are. However, no EEG (including 24 hour video which did capture several events) ever revealed any abnormalities. Nor was their anything wrong with her CAT, MRI, or PET. We even tried anti-seizure meds just in case. No effect. However, after a massive regression just a few weeks after this video, we had yet another 24 hour EEG. It revealed Infantile Spasms. It is still unresponsive to medicines. Why it did not show up as spasms sooner, we may never know.
dirtyelectronic 2 years ago
They look like Myoclonic seizures or infantile spasms...?
kittypride2 2 years ago
Yes, we finally now know that they are. However, no EEG (including 24 hour video which did capture several events) ever revealed any abnormalities. Nor was their anything wrong with her CAT, MRI, or PET. We even tried anti-seizure meds just in case. No effect. However, after a massive regression just a few weeks after this video, we had yet another 24 hour EEG. It revealed Infantile Spasms. It is still unresponsive to medicines. Why it did not show up as spasms sooner, we may never know.
dirtyelectronic 2 years ago
oh! poor little girl....this made me cried...love you little Zoe...
PIYAMAS123 2 years ago
I can't believe they eliminated ifantile spasms on EEG, her actions are EXACTLY like those with infantile spasms. It is also very obvious she is in a lot of pain and discomfort. Poor, precious little girl...I'll be keeping her and your family in my thoughts and prayers.
lawofjude 2 years ago
Yes, we finally now know that they are. However, no EEG (including 24 hour video which did capture several events) ever revealed any abnormalities. Nor was their anything wrong with her CAT, MRI, or PET. We even tried anti-seizure meds just in case. No effect. However, after a massive regression just a few weeks after this video, we had yet another 24 hour EEG. It revealed Infantile Spasms. It is still unresponsive to medicines. Why it did not show up as spasms sooner, we may never know.
dirtyelectronic 2 years ago
im sooo sorry for you all. my heart breaks. I do pray they get to the root of it. stay strong
cherchee 2 years ago
Your daughter appears to be having infantile spasms or seizures. Have you shown any of these videos to her doctor?
candace499 2 years ago
Yes, we finally now know that they are. However, no EEG (including 24 hour video which did capture several events) ever revealed any abnormalities. Nor was their anything wrong with her CAT, MRI, or PET. We even tried anti-seizure meds just in case. No effect. However, after a massive regression just a few weeks after this video, we had yet another 24 hour EEG. It revealed Infantile Spasms. It is still unresponsive to medicines. Why it did not show up as spasms sooner, we may never know.
dirtyelectronic 2 years ago