Cluster Seizures - why does this keep happening?
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- Опубліковано 18 вер 2024
- Join me in the morning as I am getting ready to bring Elin to hospital with cluster seizures; tonic clonic seizures and partial focal seizures. Later in the vlog I try to explain why she is having seizures.
I'm a special needs mum vlogger in the UK with two daughters, one of whom is severely disabled. Elin is a girl with quadriplegic cerebral palsy, she has a feeding tube, is a wheelchair user and as she can't use the toilet independently she is in a nappy / diaper.
Apart from cerebral palsy, Elin has complex medical needs and seizure disorder. She has tonic clonic, or grand mal seizures, partial focal seizures and absence seizures. She is on multiple medications every day, for her spastic muscles, for her reflux disorder and for her epilepsy. Elin is on a blended diet, which we give her through her feeding tube, and I share tips, how to and recipes.
On this channel I share our day to day life, our morning, feeding, medication and bedtime routines, feeding techniques, how Elin communicates, etc. I also showcase the relationship between Elin and her sister Alice, and how they play and interact with each other.
Elin’s medical procedures playlist: bit.ly/2HhKFsE
Tips and tricks playlist: bit.ly/2ugfoy1
Come and join us on other social media platforms:
Instagram: / parentxp
Twitter: / parentxp
Facebook: / parentxp
Can’t imagine how exhausting for you both when seizures follow one after another after another. Your experience and explanation seem spot on, Elin’s doctors and nurses would do well to listen to you 💗
Sending much Love and Praying for Peace.
Thank you
Poor baby 🥺 this hurts to watch I hope she’s doing better x
She's definitely heading the right direction now 😊
Oh goodness I hope you are doing better soon Elin love to you Toya and Alice ofcourse
I love watching your family videos
Thank you.
Your outro gets me every time seeing that beautiful smile and pretty eyes
🥰
I m so sorry you have to go through this and even for your sweet girl ☹ hope everything will be ok soon
Thanks Lucienne. It sucks when we're here but she's improving now.
Get well soon little princess hope your OK tova
Thank you 😊
Sending my love, stay safe. Xxxx
Oh Tova I’m so sorry you guys have to go through this. Poor Elin, she just breaks my heart. It is comforting to know that she has an amazing mom and dad however! I’ve worked with special needs children whose parents have no business having them or any child at that! I pray that Elin’s seizures get under control, she’s back home, and back to her smiley little self ♥️ I’m confused as to why the doctors were acting as if this is all brand new however, didn’t they go over her medical chart?!?!
It breaks my heart when our amazing, lovely children are unwanted by their own parents 😢
This particular hospital isn't great with systems that allow you to review previous visits. They want an in-hospital-epilepsy-care-plan and it's not finished yet.
I’m glad they let you skip an A&E and go straight through to where she needs to be. Rest when you can. I well remember the exhaustion of poorly children. Alice is so sweet and lively. I wish Elin a speedy recovery.
Thank you. Yes, I prefer open access, though I have to say that since the start of the pandemic A&E have been pretty fast at getting us admitted proper.
Poor girl x
Thank you 💗
From a totally different context I have experience of the *we'll probably never know the reason" stuff. I find some doctors are quite comfortable with it, and some just won't accept it.
I've also started to live by "be curious, sure... But treat the symptoms in isolation of the cause"
It's difficult, but ultimately more productive
Best of luck, hope she's okay x
I have an idea to bring up with the epilepsy nurse tomorrow that I hope will help a lot with the "we don't know why" stuff. They're such sticklers for paperwork here, I swear if I had a piece of hospital letterhead with the sentence "do what mum and dad tell you they'd practically hand us the keys to their medicine cupboards 😂
@@ParentXP like dr who psychic paper for mums! 🤣 Best of luck with it x
Oooh, that is a great idea. Right, I'm off to find The Doctor!
Oh no she's in the wars at the moment how is she doing sending my love
It's kind of crazy it takes that long to get phenytoin! She has brain injury s doc! Let's hope there isn't any infection goodness. Mum knows best. Your fab as always. Good ole ambu! That's what I do go straight to ambu. I did two days ago and I'm back in again ughhh . But I'm a big ole adult poor little Elin
Good ole ambu indeed 😅.
Oh, I hope you settle down soon too and can stay home for a while.
@@ParentXP hopefully after this admission. How is Elin now?
She's tired but not fitting as much so definitely heading the right way.
Poor Elin, Tova get a sitter for Alice and go get some sleep chickie. You need to take good care of yourself to do everything you do for your girls. I know I am on the outside looking in but a very tired mumma makes it hard for your girls and you plus being extra tired can make you more susceptible to illnesses. God bless you Tova, Alice and Elin.
Haha, how soon can you get here? 🤣
@@ParentXP if I could I would but a ocean lays between us.
Do you want to be friends with me on tex I'm a girl I'm 38 old I'm in a wheel chair my body hurts me every day so if I ask you too play with your body on tex would you play with your body down that Al the way for me baby love you too
Ok 👍
All my love, my darlings ❤
Thank you Sally. Elin is sending you half a smile 😏
@@ParentXP ❤
Hope she's feeling better but if you think the doctors are incompetent why take her to hospital?
Not all doctors are incompetent. But most importantly, at home I can't give her IV drip and IV medication so I don't have a choice but to take her to hospital.
Oh dear, Tova. How is she doing?❤❤❤❤❤❤❤❤
Heading the right way 😊
I am very very sorry
Thanks Tina
Qué linda hija tienes.
I know exactly how that feels!! Docs couldn’t recognize my seizures!! My partner had to tell the docs what they were!!
Cerebral palsy have their own “seizures”
Oh, thanks Danina, I've never thought of it like that but that phrase is going to be sooo helpful. Cerebral Palsy has their own seizures. I'm stealing that one, alright 😉
Yehh, I got CP, in a chair and Seizures, but not epilepsy, it’s CP seizures. I started these seizures in 2019 and we had absolutely no clue on why. In 2020 I got diagnosed with complex partial seizures and with mine doesn’t matter how long it goes on for and it looks exactly like Elin’s seizures.
Anyway that’s what the neurologist told us
Could it be early puberty as well?
I actually suggested that as a possibility 🙂
Just curious as to why you didn't call the paramedics
I live 5 minutes walk from the hospital... She has seizures every day and they are very much a part of life, most of them don't require paramedic care. I have called for an ambulance in the past, we had a bad one when she started going blue and that was an ambulance job. But for this she was breathing breathing responding in between the fits so I called and got her direct access to the ward and walked down.
I have a friend who has/had seizures and she moved to Ohio because they have medical marijuana, sadly Indiana does not, we are surrounded by states who have legalized it. The medical marijuana has controled her seizures. Do you have medical marijuana where you live? I’m sure it would help her. I take full spectrum CBD for my pain & have been off opioids for one year this past January. Take care, love you all! 💜🙏🏼
How did I miss this comment? Yes, we have CBD oil in the UK and yes, it is possible to get on prescription, once you've exhausted everything else. You can buy it privately, if you can afford the equivalence of a monthly rent on top of existing expenses... It costs a lot.
how did daugther bceame paraylzed
I have seizers too🙏🙏🙏🙏🙏
Hi Anna, thanks for sharing. What do your seizures feel like?
Done to you ...I new friend not easy situation like that cause I have BBY have generalized sezuire to much hurt to see situation my heart to much cry
Thank you ♥
Do you want to be friends with me on tex I'm a girl I'm 38 old I'm in a wheel chair my body hurts me every day so if I ask you too play with your body on tex
Sherila 🎉
My grand baby is 3 . with C P
😅sorry your feeling poorly 🤒
I cant tell if she having a seizure
Most people can't tell, I can barely tell and I probably miss a lot of them.
Rachel martin
Happened. Hospital
I love watching your family videos
Thanks Sarah