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Hopes Journey with epilepsy and ACC
United Kingdom
Приєднався 28 кві 2018
This page is for baby Hope, when we was 20wks pregnant she was diagnosed with hypogenesis of corpus callosum,a cyst in middle of her brain and abnormal front left lobe,and abnormalities to the right side, confirmed by MRI at 1yrs of age, the outcome wasn't looking good but we had Hope! She was 3 months old when the seizures started! Then she was Finally diagnosed with complex generalized focal,partial,absent myoclonic flexor & tonic clonic spasms at 7months then given meds but no change,daily seizures still occur, lots of EEG's show more epilepsy episodes. We were told she would need life time care, She started on clobazam, keppra,vigabatrin and topamax. She has global development delays and mobility struggles. Now 4 years old we still have HOPE and HOPE has us! She's defying her odds and is so happy!
We will take any struggles head-on! ❤
💫PLEASE SUBSCRIBE AND FOLLOW HOPES JOURNEY AND PROGRESS AND HELP BRING AWARENESS TO HCC AND EPILEPSY 💫
Thanks guys its so much appreciated ❤️
We will take any struggles head-on! ❤
💫PLEASE SUBSCRIBE AND FOLLOW HOPES JOURNEY AND PROGRESS AND HELP BRING AWARENESS TO HCC AND EPILEPSY 💫
Thanks guys its so much appreciated ❤️
Hopes seizures, big drop outs, aged 4 years 7 months #epilepsy #acc #beautiful #nevergiveup
Hopes seizures. Started with big drop attacks, eye rolls when laying down, arm spasms and stiffening of the legs and body. Clusters of seizures for around 8 minutes. This was a long strong seizure. After a nap she woke and it kicked straight in bless her x had a long nap after!
Переглядів: 1 309
Відео
Hopes first term at school, shes so happy here 💗 #epilepsy #acc #happiness #progress
Переглядів 60321 день тому
Hopes first term at her new special needs school Birch Wood, shes so so happy here and making great progress, from hydrotherapy to rebound therapy all the teachers there go above and beyond to help all their student progress and become more independent and they really do care and the children are so happy! 😊 so so thankful to everyone there thats helps hope be happy everyday we really do apprec...
Hopes Seizures woken up to a seizure eyes roll eyes stuck in a stare/spasm sword position #epilepsy
Переглядів 2,3 тис.Місяць тому
Just managed to catch this seizure after she started and started to calm down, focal seizure, stuck in a sword strike position as they call it, eyes fixed also eye rolls and spasms and jolts, around 6 minutes start to finish
Hopes Seizures, Hopes happy times summer 2024 #fighter #nevergiveup #beautiful #babygirl #seizures
Переглядів 1,7 тис.2 місяці тому
Hopes Seizures, Hopes happy times summer 2024 #fighter #nevergiveup #beautiful #babygirl #seizures
Hopes Seizures full drop out /drop attacks start to finish Seizure,eye rolls spasms to light spasms
Переглядів 26 тис.2 місяці тому
Hopes seizures, actually got this ine from the start hope woke from a nap as you can see she literally drops out, folds if sat up. Once laying down it's eye rolls and body cut off's with each spasm which happen in a cluster, this I e was short at around 5 minutes then after filming she went back to sleep again. It can be continuous with sleep seizure sleep seizure as its the tiredness/sleep tha...
Hopes Seizures, spasms , eye rolls ,drop outs, 4 years old jumpy twitchy #epilepsy #seizures
Переглядів 4,7 тис.2 місяці тому
Hope after a drop out seizure where she was playing but then dropped out and folded to the floor, put onto sofa to lay down this video was towards the end if the seizure which actually lasted around 8 minutes, Her eyes roll back, arms drop, body switches off for a second, happens like this in clusters for around 5-15 minutes daily and through the night, at the moment around 7/8 times a day and ...
Hopes seizures aged 4 years, a light cluster of spasms and eye rolls, #epilepsy
Переглядів 2,1 тис.2 місяці тому
Hopes seizures, this is a light seizure of clusters of spasms eye rolls, slight breath holding and huff with each spasm, you can tell by her pupils going large, body spaced out,stiff legs and curled in feet, eye rolls, squeeze of hands and you can hear in her breathing her breath holds for a split second with each spasm. After she will either play or sleep, mostly sleep as they exhaust her thes...
Hopes Seizures,recognising different types,not all are convulsions!,eye rolls, spasms,head drops ect
Переглядів 2,4 тис.6 місяців тому
recognising different types of Seizures is essential, not all are convulsions, as hope started Seizures as a 3 month old baby some were confused by GPS with wind,twitches and other things, if in doubt get it checked out. Always ask for second opinions and 24hr EEGS as not all types can be seen or recognised even by a proffesional eye! only you know your child only you can tell in some cases whe...
Hopes seizures Happy 4th Birthday #epilepsy #fighter #nevergiveup #lennoxgastautsyndrome #acc
Переглядів 6487 місяців тому
HAPPY 4TH BIRTHDAY to our beautiful girl Hope 🩷 Each year with you gets better and better we love to watch you grow, so beautiful, strong and determined to defeat your odds we are your biggest supporters! You amaze us everyday girlie 💓 Love Mummy & Daddy, Isaiah, Kane Mason and Shayla 🩷
Hopes Seizures drop attacks, spasms , clusters, lennox gastaut syndrome #epilepsy
Переглядів 12 тис.8 місяців тому
drop attack sruzure, eye rolls, clusters, spasms, absent seizures always ending happy hopey, amazed how alert she is throughout x #soldier #epilepsy
Hopes seizures Epidiolex medication being reduced, Happy Hope #epilepsy lennox gastaut syndrome
Переглядів 8428 місяців тому
Epidiolex being reduce to cone off it as was on 2.8ml twice daily and did no good just made her drousy sleepy and so un balanced like she was drunk, she slept all day and seizured due to tiredness but since being reduced she's happy,alert and so chatty again x starting topirmate at the same time see if helps x
Hopes seizures, lennox gastaut syndrome. drop attacks, spasms, tonic clonic generalized convulsions
Переглядів 2,3 тис.10 місяців тому
hopes seizures, still having around 7 to 10 a day everyday on 4 medications! they come from no where now, happen at anytime, to tired too happy or sad, excited, hungry, poorly or just out the blue they happen x she's getting older now and knows what's going on and doesn't like it bless her xx always followed by a nap as they tire her put so much, even at nursery sometimes none sometimes one som...
Hopes seizures, head drops, spasms, brain switch off, eye rolls, came from no where!
Переглядів 6 тис.Рік тому
hopes seizures, head drops but laying down turns to spasms, body and brain shut down. her neurologists class tbese as generalised tonic-clonics and drop attacks. so unfair but she gets through them she's a fighter that's for sure! check out our other videos of hope on our channel, their are happy ones too, 😊
Hopes seizures and ACC Hopes happy time, no epilepsy spasms or head drops, just happy Hope for 5mins
Переглядів 4,5 тис.Рік тому
Happy Hope for 5 minutes, not interrupted with seizures for once (almost but didn't get her) just time to play and laugh, and love herself, love these moments ❤️ she's so happy and a joy to watch, with all her seizure videos this makes a change so I thought we'd share so people can see there is happy times during her day, between seizures she makes the most if life bless her, also diagnosed wit...
Hopes seizures,head drops,spasms,brain switch off, always finish happy & smiling #fighter #epilepsy
Переглядів 18 тис.Рік тому
short cluster of seizures, brain switch offs,eyes roll arms spasm back, if sat up it would be full head drops as her brain switches off for a second but hope always finishes smiling and happy, like water off a ducks back sometimes, nap will follow for sure although she's happy they exhaust her bless her, around 5-8 of these ones a day around 5 really light and absent ones a day followed by 2 re...
Hopes seizures aged 3 years convulsions/head drops, drop attacks, generalised tonic clonic
Переглядів 4,1 тис.Рік тому
Hopes seizures aged 3 years convulsions/head drops, drop attacks, generalised tonic clonic
Hopes seizures aged 3 years 4 months, eye rolls , body switch off, cluster, tonic spasms, ect
Переглядів 8 тис.Рік тому
Hopes seizures aged 3 years 4 months, eye rolls , body switch off, cluster, tonic spasms, ect
Hopes seizures,3 years 3 months old. starting to scare her but ends with smiles as always! #epilepsy
Переглядів 12 тис.Рік тому
Hopes seizures,3 years 3 months old. starting to scare her but ends with smiles as always! #epilepsy
Hopes seizures evolved to convulsions 3 years old , epilepsy, absent corpus callosum
Переглядів 49 тис.Рік тому
Hopes seizures evolved to convulsions 3 years old , epilepsy, absent corpus callosum
Hopes seizures,light seizures from today,hand signals amaze us! shes so clever 🥰 #acc #epilepsy
Переглядів 1,9 тис.Рік тому
Hopes seizures,light seizures from today,hand signals amaze us! shes so clever 🥰 #acc #epilepsy
Hopes seizures almost 3 years old, bad day, seizures all day! #epilepsy #agenisisofthecorpuscallosum
Переглядів 8 тис.Рік тому
Hopes seizures almost 3 years old, bad day, seizures all day! #epilepsy #agenisisofthecorpuscallosum
Hopes walking progress 31 months hypogenesis of corpus callosum #epilepsy #nevergiveup #fighter
Переглядів 1,7 тис.Рік тому
Hopes walking progress 31 months hypogenesis of corpus callosum #epilepsy #nevergiveup #fighter
Hopes seizures light head drops, trying to control herself, happy as ever though! 35 months old
Переглядів 1,7 тис.Рік тому
Hopes seizures light head drops, trying to control herself, happy as ever though! 35 months old
Hope's seizures Head drops, up to 15 clusters a day! refractory to medication, 34 months old
Переглядів 2,8 тис.Рік тому
Hope's seizures Head drops, up to 15 clusters a day! refractory to medication, 34 months old
22 week Ultrasound absent corpus callosum
Переглядів 372Рік тому
22 week Ultrasound absent corpus callosum
Hopes Seizures all day long, head drops, spaced hands absence partial focal,alert & aware inbetween
Переглядів 4,2 тис.Рік тому
Hopes Seizures all day long, head drops, spaced hands absence partial focal,alert & aware inbetween
Hopes seizures after a nap. Complex partial focal absence generalised, tonic spasms ACC
Переглядів 2,2 тис.Рік тому
Hopes seizures after a nap. Complex partial focal absence generalised, tonic spasms ACC
Hopes Seizures Head drops spaced hands absence complex partial clonic focal lennox gastaut syndrome
Переглядів 1,2 тис.Рік тому
Hopes Seizures Head drops spaced hands absence complex partial clonic focal lennox gastaut syndrome
Hopes seizures head drops at hospital 2years 7months old seizure after nap
Переглядів 9 тис.2 роки тому
Hopes seizures head drops at hospital 2years 7months old seizure after nap
Hopes Seizures after medication increase cannabidiol (epidyolex) & colobazam 31 months old
Переглядів 2,1 тис.2 роки тому
Hopes Seizures after medication increase cannabidiol (epidyolex) & colobazam 31 months old
she strong girl
This suizure are monster they always make you unconfortable and always in an seen pain but we have hope in God everything will be okay
@valypm884 thank you x she's such a superstar, a strong girl having to go through these everyday and night. Such a fighter though she doesn't let them get her down! X
Praying for her not to have suizure I know how painful they are because I have a tonic clonic type of suizure
@valypm884 Thank you. we appreciate your support x
How is ur baby😢
How is he now
@@Pakistan-c70 'She' still seizures daily and has gone into regression at the moment cannot crawl properly or walk anymore and is non verbal, now 4 and a half years old hopes progress videos are all on our channel if you'd like to see them x
My baby has severe form of epilepsy where can I purchase the wheelchair for him to use ? He struggles to walk from time to time 😪
@viecano3317 hope was issued her chair free from our occupation therapist through our local opcare mobility centre, are you from the UK?
💜💙💚💛🧡❤
❤❤❤🎉
Beautiful girl ...having spasms but still smiles ...
veary sweet baby . oh Allah protect them from calamites
Quem gosta de sorte francês 😊
What caused the seizures?
@georgek685 hope is missing the middle part of her brain the corpus callosum and has major brain malformations both sides x check out our other videos on our channel x hope is now over 4 years old still seizuring daily bless her on 4 types of medication x ty 😊
Que linda está garotinha ok. Deu proteja ela é os seu país ok.
How do you tell thats a seizure?
@mominaahmad27 you can just tell when movements aren't right, I have 5 children and we were told to look out for this kind of thing with hope as she was diagnosed missing the middle part of her brain the corpus callosum when we was 5 months pregnant and one of the main symptoms from this after birth is seizures so made these videos to show the hospital then had EEG and it confirmed they were seizures, there's so many different types of seizures most people think of them as shaking uncontrollably on the floor but that's just one type x
Can we see more videos? 😊
Gosh, this would be hard to spot if you didn't know what you were looking for.
🎉🎉😘
Hi my dauther as a same probleme plz can i ask you cestion ??? Please
@khadijaaboulahcen7362 yes no problem
My daughter is 5 months old and has partial absence. Everything is normal for her. She has not had seizures, but she does not raise her head. Is this normal? The doctor said that she needs to be tamed, but I do not know how.
How was her day at her new school, did she like it?😊
@johnc.6910 she loves it there bless her, has rebound therapy and hydro therapy in the pool there , every type of sensory activities all day, there really good 👍
@@HopesSeizures I would love to see her therapy if it's possible, I think it'd be inspirational and educational 🙂 I think I speak for all of us viewers when I say we enjoy being a part of your lives, experiencing your ups and downs and being there to see the progress and happy achievements🙂😊❤️❤️❤️❤️
Huggs
How has she been doing?🙂 we haven't seen anything in a few weeks I was just wondering 😊
Hi thank you, shes doing OK, been so busy with her new special needs school shes started but will upload a video soon ☺️ shes seizuring a couple of times a day after school too but they're all trained to deal with it so shes in safe hands ❤
@@HopesSeizures hopefully she has a great day at school😊
My two twins baby girl they had Epilepsy now they are 4 Years old but Still they are eating medicine but when they are playing they are not look like they had Epilepsy
MashaAllah MashaAllah Allah pak sehat dain Ameen. Kia ap mujhe medicine bata skte hon meri 7 months k beti hai jo fits atain hai
❤🙏🥰💕💛🥰🙏🙏🙏😊😇😇😇
may Allah bless you baby
Si es una💕💗 princesa hermosa 💗me 💗💕💕fasina es un 💕💕angelita👸💗💕💕
Ke niña hermosa ke Dios la cuide mucho con el favor de Dios ella tiene ke salir de eso
Настойки
I'm glad to see she's doing ok. I really care about children alot. I wish her only the best of luck in life. ❤️❤️❤️💕💕💕
É uma verdadeira benção linda Deus abençoe muito ❤😊
Ella es hermosa
Thank you ❤
❤❤❤❤
❤❤❤ hermosa bebé espero que Jehová te de tu salud mi niña hermosa eres la niña de los ojos de tus papis
Thank you ❤
❤❤ hermosa bebé disfrutando de la compañía de su mami
@@MiguelAngelSanchezMontelongo thank you 😊
Thats the way i do it when i was a Little Girl too☺️
@@LisaPrincess93 bless u xx
These are hopes most recent and frequent types of seizures, never goes a day without minimum of 5
Hello.I want to talk with you about seizures
Please answer me
@@GulbesMusazade ok
@@HopesSeizures do you have instagram?
How old is hope?
Hello.What medications do you give the child?
@GulbesMusazade vigabatrin, clobazam, keppra and topamax, check out our channel and latest videos as hope is now 4 years old, still seizures daily and through the night.
@@HopesSeizures do you have WhatsApp?
I'm so happy to looking the princess is strong fighter. Wake my hope for my 7 month old IS son. Please share medication and diet. 😊
Normal diet, medication is topomax, vigabatrin, keppra and clobazam
God help you❤
Beautiful girl ❤❤ bless her Been watching her now 4 years. She is a sweet girl . And lucky to have a good Mom 😊😊
@elizabethgarland2238 thank you so much x im so greatful for your support it really helps 💜 she's growing up so fast. she starts special needs school next week we're hoping she can attend the full 5 days a week, as she's only ever managed 2 seperate days at nursery a week it just exhausts her so much like she needs a days sleep to get over the previous day bless her but she will LOVE it! ❤️
Oh baby’s breathing so heavily hopefully she’s going to not get wrost❤ 😓🙏
Two of my friends had seizures and they died I have one boy in my plus that’s autistic and has them.
I’m not going to say his name though.
She had bubbles coming in and out of her mouth is that part of it..?
@jazminlanatti5918 yes they make her druel and mouth bubble x
Precious little girl!! I think my 6 week old just had a seizure. She was gulping, had her head turned right, seemed like she couldn't breathe, was straining and turning bright red. I had a hard time keeping calm myself. I couldn't tell if she was panicking or unaware. She couldn't stop. It was repetitive. I think she would have been very obviously panicking, it wasn't obvious to me how aware she was. My Husband saw it from across the room and was convinced she choked on spit up.
Oh bless her, always check with your gp, try to record it if it happens again so they can see themselves then they'll arrange an EEG to check brain waves ect to confirm if its seizures or not x
😢
1:11 Allah sənə kömək olsun 😊 1:36 😊
Love you Hopes❤❤❤❤❤
Hi I am from India Saurabh my 3 year old daughter and she had drop attacks too any suggestions like how she cure asap
@saurabhjagtap4987 no cure just medication to help slow them down and reduce as many per day x
have you found a cure for this condition please
@@Lora-j7u no sorry x
Angel
N hw u develop ur child like this any physiotherapy
Yes she's in physio has been since age 2 years x