You don’t have to feel bad for her, @ Robloxian Life. Living with a chronic health condition can certainly be challenging, and sometimes it sucks.) but it doesn’t have to color your whole life or mean there isn’t also joy and purpose in it.
Music and Me, she may not know what epilepsy is at that young age, but I can assure you as an epilepsy patient myself, you are aware of something going on. Not during the seizure, because typically you are unconscious, but after you certainly feel the pure pain and exhaustion that goes with having a seizure. I used to have a dozen a day for over a year before my meds got balanced out. It’s very scary to go to bed in your own bed, and wake up either in an ambulance or the hospital at 4am in the morning. Your skin changes color sometimes, and every muscle and bone in your body hurts and you have the biggest headache after that can last for days. I can definitely assure you she is at least aware of it even if she doesn’t know the name.
@@22qartandmusic Well most people that have Epilepsy don't remember how they felt. In fact most people that have Epilepsy didn't know they had Epilepsy until someone informed them of what happened to them. My Mom mentioned I used to have Seizures in Kindergarten I do remember being in a Hospital watching TV and I think I was in my Pajamas.
People who have turned to CBD oil to manage their seizures or their child’s seizures have done so because the medicine wasn’t working for them and their quality of life was being affected. I think you’re doing an awesome job! ❤️
Hello! Thank you for this video. I was diagnosed at 13 with epilepsy aswell. I’ve had 5 major grand mal seizures and now am 20 years old. With focal seizures being a everyday struggle these videos open light about what I have to go through too. I appreciate this and your little girl she is going to shine a big bright light through this world ❤️ I can see it
I absolutely LOVE Max 🥰 the way he asked her to sign "help" when she needed the door open. I took ASL for a year in hs. I hope she will continue to thrive.
I work with the Epilepsy Foundation of Mississippi and I’m so thankful for you’re family bringing awareness, educating your community and being a great advocate! Thank you!!!
Crystal you and Aaron are Aurora's angels. And she is yours. GOD knew what he was doing bringing her into your lives. You are amazing epilepsy is hard, but it is manageable and as you learn it will get easier to handle.
Crystal is such an amazing mother. You can just tell how much she cares for and loves her children. It must be so difficult and overwhelming at times. She’s so strong!
Lol, I would be co sleeping until she is 20! It's so important for you to get sleep and not worry. I have always slept with my kids when they are ill. Even well into their teens. Aurora is so unbelievably cute. How special you all are ❤
I have had epilepsy since I was 12 mine were caused by a car wreck and my mom co-slept with me till I was about 15 and we got them somewhat under control. You have such a strong family keep IP the amazing work.
I was diagnosed with Epilepsy when I was 13, I think videos like this are important to educate people and show them we are normal functioning people too. Shes so cute and im sorry shes having to go through these things so young
Hi Crazy Pieces, I love watching your videos and think your all amazing. I had epilepsy as a child I remember all the seizures, the medication and the weight gain. I had the seizures from about the age 2-11 and then I stopped having them for maybe a year and the I started having the absent seizures and they changed my medication a lot. It wasn't until I was about 19/20 when I eventually grew out of it they said, I'm 34 next month and haven't had any type of seizure since. I hope that Aurora grows out of it too, I love watching her having her dance parties and her little giggle is adorable. Love to you & the family from the UK xx
One of my close friends died after a seizure. She was in her late 20s and had epilepsy since she was a child. It can be scary. I pray Aurora will be fine.
Crystal you do what you think is best, as a parent, for your child(ren). I have special needs kids who are grown and on their own. Do I think I made all the right decisions? I look back and yes I did with what I had then. If the same happened now I would make a different decision because I have different knowledge or outlook on the situations. I guess as parents we always second guess ourselves but you know your child(ren) so do what you think is best and forget any naysayers. Love you guys and hope all gets better.
Barbara Mercer God has made you and your children so beloved and beautiful in His eyes y’all are nothing but perfection. Sending love and prayers always
My daughter (16 now) was diagnosed with epilepsy at 14, her first week of high school. She is on 2400 mg of the exact same meds every day. It’s heartbreaking. We were almost 6 months seizure free until 2 days ago. It was a very mild seizure and she had been in the sun for 4 days on vacation so she was sunburned and probably dehydrated. She had 2 febrile when she was 2 years old so I’ve been through it at different ages with her. Prayers for Aurora! PS watching your family is one of my favorite parts of every day!
Cameron boyce died from a seizure 😭 My brother also has epilepsy and as she gets older make sure she doesnt have a huge time period with out food because that may cause a seizure. It did for my brother he went on a 15 hour trip and he didnt eat and once they got to the restaurant he had a seizure but hes fine
@Flamey Tube yea I kinda do my brother has epilepsy and I live with him I see him has a seizure about every 2 months and I have tge freedom of speech to talk about what ever I want
Thank you for making sure the teachers know what to do and there is a condition. Whenever I work/worked in Nursery or classes that is information I always needed or wanted to know so if something happened.
my best friend died due to a seizure when we were just eighteen, and I wish now that we all took the precautions that you guys take with aurora. you're such fantastic parents, and I'm glad you're raising awareness for the condition. I've witnessed seizures before and it's not nice to see someone you love go through it, but I hope that aurora can get better, she's such a special little girl.
even though I’ve never met your family aurora seems like the sweetest little girl, I hope she has a long beautiful life! also I just wanted to say, you guys are AMAZING parents and are so strong. i can’t even begin to imagine your child having seizures and there’s nothing you can do about it. Saying my prayers for aurora and the family!
Aurora is so lucky to have u guys and. She’s on same medication as me I’ve had epilepsy since I was born which was 2006 and hopefully she never has severe grandmal seizures like me. Have a happy life aurora and stay cute🥺😔😉
So sweet! This little girl is a ray of sunshine. I agree with someone below. She is so very lucky to have your family to guide and love her through life. Keep being fabulous! I love watching your whole family. No favorites here. I love you all the same!
Ik what it’s like to help family with epilepsy as my dad has Roladanic epilepsy Wich means he has his fits / Seizures in his sleep that can wake them up after but not knowing a lot about what’s just happened they get insomnia and or short term memory loss and won’t know what has happened for the past week
I found your channel a couple of weeks ago and am watching some old videos. I just can’t believe how much the kids matured in one year. Especially Max.
My son is 2 and has epilepsy and was finally prescribed CBD (epidiolex) by his neurologist for his seizures. Hasn’t started yet but will start soon. Hoping all goes well! Your daughter is amazing. Y’all are such a great family!
She is so cute. My daughter is going to be 9 I miss her being so young. I would love to say that even in my hard days when my depression is bad and I cant stop crying your family and your sister's make me smile
I love to see Aurora smiling and fighting and taking it so well. She is awesome. If you see this, tell her I said she is doing so well and that I am proud of her
I also have seizures 💕that’s how I discovered your channel. I’m very fortunate to sense a seizure and alert my family when I’m having one. Awhile ago I had one in biology class and it was hard but I got tested when I had my first one when I was really young. They haven’t been able to figure out what’s wrong but going in for more tests soon💕
What a wonderful job you are doing with Araura. You are super parents. I am 71 and have epilepsy and know the impact it has on my husband. He is a wonderful and caring person and I love him so much. We have been married for 50 years and i have had epilepsy for 20 years. Given the love and support from both of you and all her siblings I pray she will have a wonderful life. My daughter is a teacher with children with additional needs and has one little one in her class who is non verbal but my granddaughter is teaching her Makaton. Do you have Makaton sign language over there. We are from Manchester in England. I love watching your shows. When I was watching tonight you had Arauras hair in bunches. Can I be cheeky and suggest a short tailored hairstyle would suit her more. Gods blessings to all of you Veronica xx
I love seeing aurora, it shows us how happy she is even though she is going through so much ❤️We all have to be greatful for everything we have in life, you’re such a great fighter aurora, we love you ❤️
I have Epilepsy to and I know the pain Aurora is going through.I have been dealing with it for a long time and she is such a fighter so I'm praying for you guys.Stay safe.
co sleeping is actually pretty good for little kids! Of course, it depends on the parents and the kids and what everyone feels comfortable with :) I think you're both doing an awesome job !!!
Oh my heavens that unicorn tutu is awesome!!! Sweet girl. Christ Jesus bless your entire family. It is so beautiful to see a family with so much love in it. A blessing from God! Great job mom and dad and each sibling. Love to your family from my daughter and i. May the Lord God give you all strength, peace, comfort and healing in the name of Jesus.
I feel so bad for her. She is so young and having health issues already! I know how she feels. I have epilepsy too and it can be hard, but you just have to live with it and deal with it. Stay strong Aurora!
Aww aurora is such a wee fighter and so cute. The messy hair just adds more cuteness to her personality. I don’t blame you for having her in your bed at night, I actually let my youngest sleep with me she is 10 next month as I couldn’t settle and was constantly checking on her and she doesn’t have epilepsy so if it makes you feel better there is no need to apologise or explain. Hope things go well, Much love from Scotland x
It's so funny watching Aurora dance in this video and then videos now she is doing the tiktok movies lol she is just the best little beauty so pure and kind because of her amazing parents .. I love you all..
I do appreciate you being open to researching cbd! It helped my father so much in his end stages of brain and lung cancer, it certainly can be so beneficial but I’m sooooo happy you’re looking at ALL the research both good and bad because it’s true, not all cbd is made or grown in the best circumstances!!❤️
Aurora is such a fighter, I have epilepsy (I’ve had it since I was born). I’m so proud of Aurora I know how hard it can be after having a seizure. I had to transfer to another medication and I know how hard it can be for a young child to have to take medicine 2 times a day. She’s such a fighter
I’m also epileptic and I got it when I was 6 months old. I’m now 16 about to be 17 and I also take Oxcarbazepine in pill form but when I was younger I also took it in the liquid form. Watching this video brings back so many memories of me growing up. You are such a great mother and I really respect you because I know my mom went through many nights and days where she was confused because she didn’t know what was going on. She is such a strong little girl and I wish y’all the best!
Hey crazy pieces, Just wanted to provide an example of someone who has lived a full life with uncontrolled seizures. I am a RN and caregiver to my uncle, who has Lennox-Gastaut Syndrome (it took him almost 20 years to receive this diagnosis, which opened up more specific pathways for medication so ask your doctor about the criteria for diagnosis!) and every type of seizure, including clonic tonics. He is about to be 47 and even though his seizures are uncontrolled and he has been in status epilepticus more times than I can count, he is happy and lives a wonderful life! Wishing you all the best throughout this journey. ❤️
Thank you so much for sharing about your Uncle. We have heard from multiple people about Lennox-Gastaut and will do some research to see if it fits. Hearing others are going through this also helps so much so thank you for sharing!
My 4 yr. old ( 5 in Sept.) granddaughter, Laila, is non- verbal, epileptic. Her diagnosis is LGS and she had her on-set at 2 1/2 yrs old. LGS is in part, defined as many types of seizures and very hard to control seizures. She is on clobazam and epidiolex. The epidiolex is pharmaceutical script of CBD. We had her on Charlottes Web CBD before the epidiolex was prescribed and okayed through insurance. Charlottes Web was wonderful for her as she was seizure free for about 10 mths after starting it. However, the brain is tricky ,and as often happens with epilepsy, she became resistant and it stopped working for her. So we started looking for the next med. Sadly, this has become a common occurrence for Laila’s situation concerning meds. I have had all the fears and frustrations that go along with this diagnosis. I also have the fear of her sleeping alone. She has a toddler bed next to my side of the bed, but often she just sleeps with my husband and I. I mention that to let you know, it may be common with these situations, and those of us living it out, completely understand. I will be praying for Aurora and your family, as I pray for Laila. Blessings!!
Thank you for sharing this. I have a funeral Friday for a gorgeous friend who sadly passed away from SUDEP. It is very scary for people with epilepsy to have this as a reality. One very good friend of mine also had a seizure in the bath almost 2 years ago which took her life. So hard but I’m so glad she has the embrace watch can really make a difference , all my love
Epilepsy is so scary! I feel you! My husband has had it since he was 15. His is thankfully controlled with his meds, and you are right the meds change their moods and personalities. He also has days where he wants to be in bed all day. I’ve only seen two seizures the 9 years we’ve been together, and they were bc he forgot his meds. I’m on top of that now though with lots of reminders in my phone! I can only imagine what it’s like though for a momma to see her baby going through that, in my opinion it would be tougher! Glad she has y’all though! You can see the love you have to her!!
As someone who also has tonic clonic seizures, and have since I was a toddler I can tell you that as she gets older she will get to know what her body feels like as a seizure is coming on. Most Neurologist refer to this as an "aura" It is different for everyone some see colors around things other have their vision go blurry I tend to get what I call twitches where my arm or leg will randomly jerk and I get a huge headache. As the parent if you listen to what she says around the time she has the seizures you will start to notice what her aura is like and can start teaching her to pay attention to when she feels it so she can tell you. I will keep you and her in my prayers as you go through this. As a tip regaurding the weight gain from the medicine I suggest you research the ketogenic diet it helps epileptics maintain weight and can actually help naturally limit seizures she has I have been on the diet since I was 5 when my mom was told about it. Good luck
Thank you for sharing her story everyone should know what do too if someone is having a seizure. Every day I struggle because I never know when I will have one
Hi I’m from the UK my name is Jonathan and I have epilepsy. I do understand what you’re going through, as my family had to look after me when I was younger.
My now 19 year old son has epilepsy since age 14 due to braintumor surgery. He is now on 3 medications on highest dose and has 5-6 seizures a day. His epilepsy is treatment resistent the specialist say. He is highly intelligent but cannot do college because his memory is highly affected. Keeping a job is also very difficult because once he has had a seizure during work they tell him he cannot stay. So life is very very challenging for him. Hope Aurora won’t have to deal with these issues when she grows up ....
As someone who has epilepsy themself, I recommend trying gummies once she gets old enough! Also, I recently started having seizures while sleeping, which can be normal if the sleeping pattern or normal daily routine is thrown off. Which could also explain why she's so tired, or acting as if she didn't get enough sleep- it's her bodies way of letting her know something is wrong and shutting itself down. I hope she gets better and keeps strong throughout her journey! Stay strong, y'all got this!
I am epileptic, diagnosed at 4. Worsened hugely at puberty, Anything from 1 cluster every two months - 24 seizures per day. You mention “Do not put anything in mouth”, Something like a paperback book is ok in mouth during seizures. Putting nothing in mouth can be as bad as putting something something in mouth. Grinding and snapping teeth during seizures result in broken and chipped teeth, (I’m talking from experience)! Having had paperback shoved in my mouth during seizures I can say from experience my teeth fare better that way. No choking AND no broken teeth! I definitely prefer something like paper, card, even fabric between teeth!
Crystal and Aaron, I can understand your protection for Aurora. I have Epilepsy myself; when I was very young I was taking Epanutin and Tegretol. Now I take Epilim.
I had a friend that has epilepsy but at the time was undiagnosed but we knew she had seizures and we were in this like community course so out of the school at a local collage and none of the other class mates or lectures knew what to do when or if she had one that not only made her nervous but also everyone involved in the situation including her parents being worried because they weren't there understandable but anyway i took it upon myself to talk to my school and ask to be put through first aid course so if in any case she had one at least i knew and knew what to do etc i did already have previous knowledge school agreed and both lecturers her parents and the school were blown away with my actions I personally didn't think it was that big of a think to do on my part as this helped me feel more comfortable and confident as we also this girl and I traveled on a public bus between our town and neighboring town for another extra curriculum thing a hour each way so made sense to me but yea all we can really do is recovery position if possible and remove anything that could cause them harm and then speak to them and reassure them that you're there etc that is what we were told anyway and ofc it would be different on age, type that person has and environment. That is my little experience i have with the condition so watching these videos and seeing how if effects differently helps as i'm training to be an early childhood educator as well aha so thank you so much for sharing
I did the same at my school! Me and a teacher realized that even tho we have a class of first aids, the people taking it are never around when something happens. We are going to ask if we can bring someone to school so EVERYONE knows how to handle a situation, from kids to adults. I personally know how to handle seizures and some stuff but there is a lot of things that I can learn. Thankfully when we had accidents like someone hitting their heads and getting a big cut and passing out, the students that were close knew how to do the first aids until a teacher got there, but a lot of people wouldn't be able to help, so we need to prepare everyone not only to act at school, but if something happens outside and no one knows what to do and the ambulance takes long to get there. These little things can literally save lives!
My dad has seizures and was thought to have epilepsy but it turns out it's not, it's been 3 years and they still dont know because the doctors were we live aren't the best in my opinion. My dad hasn't had a seizure in a while which I'm very happy about. I have also recently had an episode like a seizure that we are still unsure about, I've been going to the doctor and a nephrologist. I'm still undergoing alot of test but we suspect either kidney disease or hypertension, my anxiety also doesnt help but I'm doing fine and haven't had an episode for a while aswell. I wish the best for your family and Auroras journey through over coming epilepsy ❤
My 22 year old son is on that medication and that's not for seizures for another medical for another issue but it does make you sleepy very very sleepy
I had my first granmal seizure at age 21... and was put on medication about a year later, when I had 4 seizures in 8 hours... 2pm, 4pm, 6pm, & 8pm in Emergency. I was kept in for observation for 3 days after that, as I began meds for the first time in my life. I was fortunate enough that the medication worked. But my medication levels are at their highest; I need two different meds together in order to make them work successfully. I have had numerous EEGs, MRIs, blood tests, & neurologist visits ever since. Although it was an emotional upheaval & change to my whole world in the beginning, I now have been employed for years in a job, I even got a special drivers license, & I have a partner; we’ve been together for 4 years thus far. 30 years later, I am still here. Still on meds, still employed. The technology has improved dramatically over those decades... the brain scans finally revealed two scars on my left temporal lobe. These scars may have been caused by my traumatic birth all those years ago. My mother had a difficult birth, lost a LOT of blood, and almost died in hospital when a nurse accidentally tried to give her a blood transfusion with the incorrect blood 🩸 type. I was eventually delivered naturally; but my mother was two small to actually do this safely. My next brother was born via caesarean, & the next two were 5 weeks & 4 weeks premature; so small enough to be delivered safely. Epilepsy is still a very mysterious condition, and there is a whole spectrum of different types & causes. An invisible condition... and the worst part of it is when people react in fear around you.
Crystal i have epilepsy too since i was born but it i wasn't diagnosis until i was 11years old at the end i found out i have 14 forms of epilepsy we have been told by a professor to wear a eye patch when traveling because of the sun
Im on a seizure medication for migraines, Topiramate idk if someone as young as Aurora can take it. I'm not going to lie it's made a huge difference in my life and I've been on it since I was 16 and I'm almost 32. A family friend has seizures and has been on it for a few years and it has helped.
I have had epilepsy for 12 years diagnosed for 8 I had my first 80 minute episode when I was 5 I struggled for years to get diagnosed and get in the right meds extreme weight loss due to medication and to even understand the fact that I have epilepsy and now that I've had it for over 12 years I am doing very well and am an advocate for kids around my state and region in hopes of spreading awareness to break the stereotypes and help others understand so happy others are doing the same to show that we are just like any other person with a few special quirks
Hi Aurora!!!! I also have epilepsy and I’m getting a medical id and a seizure Watch (new diagnosis) and I’m taking medication as well!!! Bless u Aurora!!! From, Gracie May
Aww poor baby girl ! I feel bad for lil ones that have to go thru so much its just heartbreaking 💔 ive went thru alot with my 2 oldest boys growing up. Their now 20 and 19 but my 19 yr old needs a kidney transplant but were in the beginning of the process of a transplant and hes gonna be doing dialysis in the next few months which he wants to do at home so ill be hooking him up and everything for that. Its hard as a mother to go thru these things but we have to do what is needed to keep our children healthy and well. I love u guys and ill keep sweet Aurora in my prayers 🙌 Shes just the cutest lil girl ❤️
I just wanted to comment 3 years later as someone who lives in a place where growing cannabis at home is legal and quite common, I have never heard of anyone using pesticides on their plants as they are typically used for consumption. Most professional growers (even those who grow just of CBD and not the THC) says that using pesticides can actually damage the plants since they are so fragile.
Hey crystal do tou have the epilepsy mat they are brilliant my son has had 3 seizures at night since we haave had it and its notified me every time and waiting on the embrace watch to come love your vlogs and your family are amazing xx
Aurora is on the same medication as me for seizures. I’ve has seizures since 2013. She is such a fighter. I love you guys.
I have epilepsy since 2004 when i was in kindergarten and now I’m in college with a service dog in training
You don’t have to feel bad for her, @ Robloxian Life.
Living with a chronic health condition can certainly be challenging, and sometimes it sucks.) but it doesn’t have to color your whole life or mean there isn’t also joy and purpose in it.
I feel so bad for ye
My daughter is on the same medication to. Has been the last 5 yrs
I have been on that medicine since 2013 too
I’m so happy to see Aurora smiling and all happy I love that she looks on the bright side of life instead of the dark things
Annayka I don’t think she knows she has. epilepsy
Music and Me, she may not know what epilepsy is at that young age, but I can assure you as an epilepsy patient myself, you are aware of something going on. Not during the seizure, because typically you are unconscious, but after you certainly feel the pure pain and exhaustion that goes with having a seizure. I used to have a dozen a day for over a year before my meds got balanced out. It’s very scary to go to bed in your own bed, and wake up either in an ambulance or the hospital at 4am in the morning. Your skin changes color sometimes, and every muscle and bone in your body hurts and you have the biggest headache after that can last for days. I can definitely assure you she is at least aware of it even if she doesn’t know the name.
Annayka agree!!
@@22qartandmusic Well most people that have Epilepsy don't remember how they felt.
In fact most people that have Epilepsy didn't know they had Epilepsy until someone informed them of what happened to them.
My Mom mentioned I used to have Seizures in Kindergarten I do remember being in a Hospital watching TV and I think I was in my Pajamas.
Hi aurora is ruby xx
People who have turned to CBD oil to manage their seizures or their child’s seizures have done so because the medicine wasn’t working for them and their quality of life was being affected. I think you’re doing an awesome job! ❤️
Hello! Thank you for this video. I was diagnosed at 13 with epilepsy aswell. I’ve had 5 major grand mal seizures and now am 20 years old. With focal seizures being a everyday struggle these videos open light about what I have to go through too. I appreciate this and your little girl she is going to shine a big bright light through this world ❤️ I can see it
I absolutely LOVE Max 🥰 the way he asked her to sign "help" when she needed the door open. I took ASL for a year in hs. I hope she will continue to thrive.
I work with the Epilepsy Foundation of Mississippi and I’m so thankful for you’re family bringing awareness, educating your community and being a great advocate!
Thank you!!!
Crystal you and Aaron are Aurora's angels. And she is yours. GOD knew what he was doing bringing her into your lives. You are amazing epilepsy is hard, but it is manageable and as you learn it will get easier to handle.
Thank you Debra for your kind words!
Crystal is such an amazing mother. You can just tell how much she cares for and loves her children. It must be so difficult and overwhelming at times. She’s so strong!
Lol, I would be co sleeping until she is 20! It's so important for you to get sleep and not worry. I have always slept with my kids when they are ill. Even well into their teens. Aurora is so unbelievably cute. How special you all are ❤
Lol I’m 19 and I sleep with my service dog next to me
Auroras smile is so cute
like if u agree
Everyone agrees
I have had epilepsy since I was 12 mine were caused by a car wreck and my mom co-slept with me till I was about 15 and we got them somewhat under control. You have such a strong family keep IP the amazing work.
I love how you set three alarms as a reminder. It’s so easy for us mom to forget sometimes.
I was diagnosed with Epilepsy when I was 13, I think videos like this are important to educate people and show them we are normal functioning people too. Shes so cute and im sorry shes having to go through these things so young
Hi Crazy Pieces, I love watching your videos and think your all amazing.
I had epilepsy as a child I remember all the seizures, the medication and the weight gain. I had the seizures from about the age 2-11 and then I stopped having them for maybe a year and the I started having the absent seizures and they changed my medication a lot. It wasn't until I was about 19/20 when I eventually grew out of it they said, I'm 34 next month and haven't had any type of seizure since.
I hope that Aurora grows out of it too, I love watching her having her dance parties and her little giggle is adorable.
Love to you & the family from the UK xx
I love how positive she is and how she took all those kids in has her own and they are all so beautiful
One of my close friends died after a seizure. She was in her late 20s and had epilepsy since she was a child. It can be scary. I pray Aurora will be fine.
Crystal you do what you think is best, as a parent, for your child(ren). I have special needs kids who are grown and on their own. Do I think I made all the right decisions? I look back and yes I did with what I had then. If the same happened now I would make a different decision because I have different knowledge or outlook on the situations. I guess as parents we always second guess ourselves but you know your child(ren) so do what you think is best and forget any naysayers. Love you guys and hope all gets better.
Barbara Mercer God has made you and your children so beloved and beautiful in His eyes y’all are nothing but perfection. Sending love and prayers always
My daughter (16 now) was diagnosed with epilepsy at 14, her first week of high school. She is on 2400 mg of the exact same meds every day. It’s heartbreaking. We were almost 6 months seizure free until 2 days ago. It was a very mild seizure and she had been in the sun for 4 days on vacation so she was sunburned and probably dehydrated. She had 2 febrile when she was 2 years old so I’ve been through it at different ages with her. Prayers for Aurora! PS watching your family is one of my favorite parts of every day!
For some reason this video makes me emotional specialy at the end. The love you have for your daughter is beautiful ❤️❤️❤️ God bless love you all xx
You should take aurora to dance classes. She seems to love to dance and it would help with her health and fitness alot! 😊❤
I love how max is always taking care of aurora it's the cutest thing ever ❤️❤️
Cameron boyce died from a seizure 😭 My brother also has epilepsy and as she gets older make sure she doesnt have a huge time period with out food because that may cause a seizure. It did for my brother he went on a 15 hour trip and he didnt eat and once they got to the restaurant he had a seizure but hes fine
I don’t think you should have brought that up because she a little girl and I’m not trying to be rude
@Flamey Tube it was it was confirmed and im aloud to talk about Cameron
@@maricew2661 I was just saying something that could be helpful
@Flamey Tube yea I kinda do my brother has epilepsy and I live with him I see him has a seizure about every 2 months and I have tge freedom of speech to talk about what ever I want
Made by Kaitlyn yes you are allowed to talk about Cameron but they don’t need to know that
Thank you for making sure the teachers know what to do and there is a condition. Whenever I work/worked in Nursery or classes that is information I always needed or wanted to know so if something happened.
my best friend died due to a seizure when we were just eighteen, and I wish now that we all took the precautions that you guys take with aurora. you're such fantastic parents, and I'm glad you're raising awareness for the condition. I've witnessed seizures before and it's not nice to see someone you love go through it, but I hope that aurora can get better, she's such a special little girl.
I love Aurora dancing in the intro credits. It is so cute and always makes me smile.
even though I’ve never met your family aurora seems like the sweetest little girl, I hope she has a long beautiful life! also I just wanted to say, you guys are AMAZING parents and are so strong. i can’t even begin to imagine your child having seizures and there’s nothing you can do about it. Saying my prayers for aurora and the family!
Aurora is so lucky to have u guys and. She’s on same medication as me I’ve had epilepsy since I was born which was 2006 and hopefully she never has severe grandmal seizures like me. Have a happy life aurora and stay cute🥺😔😉
So sweet! This little girl is a ray of sunshine. I agree with someone below. She is so very lucky to have your family to guide and love her through life. Keep being fabulous! I love watching your whole family. No favorites here. I love you all the same!
Prayers for you as you care for Aurora. Thanks for sharing this part of your family life. ❤️❤️❤️
Ik what it’s like to help family with epilepsy as my dad has Roladanic epilepsy Wich means he has his fits / Seizures in his sleep that can wake them up after but not knowing a lot about what’s just happened they get insomnia and or short term memory loss and won’t know what has happened for the past week
Can u do a video of dress code of what yall let the kids wear (girls/age )
Eve Burns good idea
thank u
That is a good idea
Yes great idea ❤️
Simone Darmoul think you
I found your channel a couple of weeks ago and am watching some old videos. I just can’t believe how much the kids matured in one year. Especially Max.
My son is 2 and has epilepsy and was finally prescribed CBD (epidiolex) by his neurologist for his seizures. Hasn’t started yet but will start soon. Hoping all goes well! Your daughter is amazing. Y’all are such a great family!
Please come back and let us know once he does we would love to hear an update of how it works! Hope all is well!
OmG 😪😪 that is such a swwwweeeet child. She is so sweet in every video. God bless her and help her with the epilepsy 🙏
She’s so lucky to have such a fun, loving and supportive family!
She is so cute. My daughter is going to be 9 I miss her being so young. I would love to say that even in my hard days when my depression is bad and I cant stop crying your family and your sister's make me smile
Love little Aurora keep getting better
I love to see Aurora smiling and fighting and taking it so well. She is awesome. If you see this, tell her I said she is doing so well and that I am proud of her
I also have seizures 💕that’s how I discovered your channel. I’m very fortunate to sense a seizure and alert my family when I’m having one. Awhile ago I had one in biology class and it was hard but I got tested when I had my first one when I was really young. They haven’t been able to figure out what’s wrong but going in for more tests soon💕
Your family is amazing I pray that Aurora grows up healthy and happy I love you guys ❤
God bless you crystal and aaron. Everything that you two do for the kids is inspiring. The world needs more people you guys
It’s great to see her smile!! She has a contagious smile. My brother has epilepsy. It’s been a life long journey. He is 57 years old.
I to am in foster care so watching ya'll gives me hope for the future thank you
I'm in foster care too x
Hannah puppy2012 lol
Auroras sooo cute😍
I know she’s going to grow up to be such a great person❤️
What a wonderful job you are doing with Araura. You are super parents. I am 71 and have epilepsy and know the impact it has on my husband. He is a wonderful and caring person and I love him so much. We have been married for 50 years and i have had epilepsy for 20 years. Given the love and support from both of you and all her siblings I pray she will have a wonderful life. My daughter is a teacher with children with additional needs and has one little one in her class who is non verbal but my granddaughter is teaching her Makaton. Do you have Makaton sign language over there. We are from Manchester in England. I love watching your shows. When I was watching tonight you had Arauras hair in bunches. Can I be cheeky and suggest a short tailored hairstyle would suit her more. Gods blessings to all of you Veronica xx
I love seeing aurora, it shows us how happy she is even though she is going through so much ❤️We all have to be greatful for everything we have in life, you’re such a great fighter aurora, we love you ❤️
I have Epilepsy to and I know the pain Aurora is going through.I have been dealing with it for a long time and she is such a fighter so I'm praying for you guys.Stay safe.
co sleeping is actually pretty good for little kids! Of course, it depends on the parents and the kids and what everyone feels comfortable with :) I think you're both doing an awesome job !!!
Oh my heavens that unicorn tutu is awesome!!! Sweet girl. Christ Jesus bless your entire family. It is so beautiful to see a family with so much love in it. A blessing from God! Great job mom and dad and each sibling. Love to your family from my daughter and i.
May the Lord God give you all strength, peace, comfort and healing in the name of Jesus.
Aurora is so blessed to be in such a loving family. She is having a wonderful life!
I feel so bad for her. She is so young and having health issues already! I know how she feels. I have epilepsy too and it can be hard, but you just have to live with it and deal with it. Stay strong Aurora!
Aww aurora is such a wee fighter and so cute. The messy hair just adds more cuteness to her personality. I don’t blame you for having her in your bed at night, I actually let my youngest sleep with me she is 10 next month as I couldn’t settle and was constantly checking on her and she doesn’t have epilepsy so if it makes you feel better there is no need to apologise or explain. Hope things go well,
Much love from Scotland x
It's so funny watching Aurora dance in this video and then videos now she is doing the tiktok movies lol she is just the best little beauty so pure and kind because of her amazing parents .. I love you all..
I wanna be a mom like this someday. Much love to you guys and I hope Aurora gets better.💖💕
I do appreciate you being open to researching cbd! It helped my father so much in his end stages of brain and lung cancer, it certainly can be so beneficial but I’m sooooo happy you’re looking at ALL the research both good and bad because it’s true, not all cbd is made or grown in the best circumstances!!❤️
Aurora is such a fighter, I have epilepsy (I’ve had it since I was born). I’m so proud of Aurora I know how hard it can be after having a seizure. I had to transfer to another medication and I know how hard it can be for a young child to have to take medicine 2 times a day. She’s such a fighter
I’m also epileptic and I got it when I was 6 months old. I’m now 16 about to be 17 and I also take Oxcarbazepine in pill form but when I was younger I also took it in the liquid form. Watching this video brings back so many memories of me growing up. You are such a great mother and I really respect you because I know my mom went through many nights and days where she was confused because she didn’t know what was going on. She is such a strong little girl and I wish y’all the best!
hi. I'm a Korean. I am suffering from epilepsy. I understand pain in a child.
이무비 lucky your Korean you understand what bts is saying 😭
@@skullkitties lol. I wish.
Hey crazy pieces,
Just wanted to provide an example of someone who has lived a full life with uncontrolled seizures. I am a RN and caregiver to my uncle, who has Lennox-Gastaut Syndrome (it took him almost 20 years to receive this diagnosis, which opened up more specific pathways for medication so ask your doctor about the criteria for diagnosis!) and every type of seizure, including clonic tonics. He is about to be 47 and even though his seizures are uncontrolled and he has been in status epilepticus more times than I can count, he is happy and lives a wonderful life!
Wishing you all the best throughout this journey. ❤️
Thank you so much for sharing about your Uncle. We have heard from multiple people about Lennox-Gastaut and will do some research to see if it fits. Hearing others are going through this also helps so much so thank you for sharing!
Sometimes life is complicated... my daughter has epilepsy too, but hey, God has a reason and a plan for each one of us.
I love watching your family videos
My 4 yr. old ( 5 in Sept.) granddaughter, Laila, is non- verbal, epileptic. Her diagnosis is LGS and she had her on-set at 2 1/2 yrs old. LGS is in part, defined as many types of seizures and very hard to control seizures. She is on clobazam and epidiolex. The epidiolex is pharmaceutical script of CBD. We had her on Charlottes Web CBD before the epidiolex was prescribed and okayed through insurance. Charlottes Web was wonderful for her as she was seizure free for about 10 mths after starting it. However, the brain is tricky ,and as often happens with epilepsy, she became resistant and it stopped working for her. So we started looking for the next med. Sadly, this has become a common occurrence for Laila’s situation concerning meds.
I have had all the fears and frustrations that go along with this diagnosis. I also have the fear of her sleeping alone. She has a toddler bed next to my side of the bed, but often she just sleeps with my husband and I. I mention that to let you know, it may be common with these situations, and those of us living it out, completely understand.
I will be praying for Aurora and your family, as I pray for Laila. Blessings!!
Thank you for sharing this. I have a funeral Friday for a gorgeous friend who sadly passed away from SUDEP. It is very scary for people with epilepsy to have this as a reality. One very good friend of mine also had a seizure in the bath almost 2 years ago which took her life. So hard but I’m so glad she has the embrace watch can really make a difference , all my love
Epilepsy is so scary! I feel you! My husband has had it since he was 15. His is thankfully controlled with his meds, and you are right the meds change their moods and personalities. He also has days where he wants to be in bed all day. I’ve only seen two seizures the 9 years we’ve been together, and they were bc he forgot his meds. I’m on top of that now though with lots of reminders in my phone! I can only imagine what it’s like though for a momma to see her baby going through that, in my opinion it would be tougher! Glad she has y’all though! You can see the love you have to her!!
Do you keep her medical ID bracelet on her all the time? Even when she’s
sleeping?
Uh Oh Maya's Here i do 🤷🏾♀️ why not? it’s waterproof and easy to forget to put on each day.
That's also when ur most vulnerable somtimes
I have epilepsy and I have a sos talisman on a chain, I take it off at night and put it back on in the morning.
Jon Davies same but I normally have a chain that I put on my belt that says my name and that I have epilepsy and ptsd
My grandma has epilepsy. She once had a seizure when I was at her house when I was little and it was super scary😬
As someone who also has tonic clonic seizures, and have since I was a toddler I can tell you that as she gets older she will get to know what her body feels like as a seizure is coming on. Most Neurologist refer to this as an "aura" It is different for everyone some see colors around things other have their vision go blurry I tend to get what I call twitches where my arm or leg will randomly jerk and I get a huge headache. As the parent if you listen to what she says around the time she has the seizures you will start to notice what her aura is like and can start teaching her to pay attention to when she feels it so she can tell you. I will keep you and her in my prayers as you go through this. As a tip regaurding the weight gain from the medicine I suggest you research the ketogenic diet it helps epileptics maintain weight and can actually help naturally limit seizures she has I have been on the diet since I was 5 when my mom was told about it. Good luck
Thank you for sharing her story everyone should know what do too if someone is having a seizure. Every day I struggle because I never know when I will have one
Aurora is so brave she is amazing. God bless you guys! love your channel
Alora is doing the best job ever and I love her
Hi I’m from the UK my name is Jonathan and I have epilepsy. I do understand what you’re going through, as my family had to look after me when I was younger.
I just love how Max adores Aurora a lot brotherly love 💖
crazy how well she speaks now
My now 19 year old son has epilepsy since age 14 due to braintumor surgery. He is now on 3 medications on highest dose and has 5-6 seizures a day. His epilepsy is treatment resistent the specialist say. He is highly intelligent but cannot do college because his memory is highly affected. Keeping a job is also very difficult because once he has had a seizure during work they tell him he cannot stay. So life is very very challenging for him. Hope Aurora won’t have to deal with these issues when she grows up ....
As someone who has epilepsy themself, I recommend trying gummies once she gets old enough! Also, I recently started having seizures while sleeping, which can be normal if the sleeping pattern or normal daily routine is thrown off. Which could also explain why she's so tired, or acting as if she didn't get enough sleep- it's her bodies way of letting her know something is wrong and shutting itself down. I hope she gets better and keeps strong throughout her journey! Stay strong, y'all got this!
I am epileptic, diagnosed at 4. Worsened hugely at puberty, Anything from 1 cluster every two months - 24 seizures per day.
You mention “Do not put anything in mouth”, Something like a paperback book is ok in mouth during seizures. Putting nothing in mouth can be as bad as putting something something in mouth.
Grinding and snapping teeth during seizures result in broken and chipped teeth, (I’m talking from experience)! Having had paperback shoved in my mouth during seizures I can say from experience my teeth fare better that way.
No choking AND no broken teeth!
I definitely prefer something like paper, card, even fabric between teeth!
Crystal and Aaron, I can understand your protection for Aurora. I have Epilepsy myself; when I was very young I was taking Epanutin and Tegretol. Now I take Epilim.
I LOVE YOU AURORA!
God is good! Glad to see her doing well, smiling and being able to kid things 😇🙏🏼💕
I had a friend that has epilepsy but at the time was undiagnosed but we knew she had seizures and we were in this like community course so out of the school at a local collage and none of the other class mates or lectures knew what to do when or if she had one that not only made her nervous but also everyone involved in the situation including her parents being worried because they weren't there understandable but anyway i took it upon myself to talk to my school and ask to be put through first aid course so if in any case she had one at least i knew and knew what to do etc i did already have previous knowledge school agreed and both lecturers her parents and the school were blown away with my actions I personally didn't think it was that big of a think to do on my part as this helped me feel more comfortable and confident as we also this girl and I traveled on a public bus between our town and neighboring town for another extra curriculum thing a hour each way so made sense to me but yea all we can really do is recovery position if possible and remove anything that could cause them harm and then speak to them and reassure them that you're there etc that is what we were told anyway and ofc it would be different on age, type that person has and environment. That is my little experience i have with the condition so watching these videos and seeing how if effects differently helps as i'm training to be an early childhood educator as well aha so thank you so much for sharing
I did the same at my school! Me and a teacher realized that even tho we have a class of first aids, the people taking it are never around when something happens. We are going to ask if we can bring someone to school so EVERYONE knows how to handle a situation, from kids to adults. I personally know how to handle seizures and some stuff but there is a lot of things that I can learn. Thankfully when we had accidents like someone hitting their heads and getting a big cut and passing out, the students that were close knew how to do the first aids until a teacher got there, but a lot of people wouldn't be able to help, so we need to prepare everyone not only to act at school, but if something happens outside and no one knows what to do and the ambulance takes long to get there. These little things can literally save lives!
Oh my goodness!!! Aurora is absolutely precious!!!! She is a beautiful little girl!!!! ♥️♥️♥️
My dad has seizures and was thought to have epilepsy but it turns out it's not, it's been 3 years and they still dont know because the doctors were we live aren't the best in my opinion. My dad hasn't had a seizure in a while which I'm very happy about. I have also recently had an episode like a seizure that we are still unsure about, I've been going to the doctor and a nephrologist. I'm still undergoing alot of test but we suspect either kidney disease or hypertension, my anxiety also doesnt help but I'm doing fine and haven't had an episode for a while aswell. I wish the best for your family and Auroras journey through over coming epilepsy ❤
My 22 year old son is on that medication and that's not for seizures for another medical for another issue but it does make you sleepy very very sleepy
I am really happy she got a great 2Moms and a dad❤️🥺
I really love Aurora ❤️
I always pray for u guys especially her🌚❤️
Aurora is much loved by all of her fans crystal
When she said Aurora hit the the woah it was so cute
She has the same type of epilepsy as my sister we just found it at her last appointment
I had my first granmal seizure at age 21... and was put on medication about a year later, when I had 4 seizures in 8 hours... 2pm, 4pm, 6pm, & 8pm in Emergency.
I was kept in for observation for 3 days after that, as I began meds for the first time in my life. I was fortunate enough that the medication worked. But my medication levels are at their highest; I need two different meds together in order to make them work successfully.
I have had numerous EEGs, MRIs, blood tests, & neurologist visits ever since.
Although it was an emotional upheaval & change to my whole world in the beginning, I now have been employed for years in a job, I even got a special drivers license, & I have a partner; we’ve been together for 4 years thus far.
30 years later, I am still here. Still on meds, still employed.
The technology has improved dramatically over those decades... the brain scans finally revealed two scars on my left temporal lobe. These scars may have been caused by my traumatic birth all those years ago. My mother had a difficult birth, lost a LOT of blood, and almost died in hospital when a nurse accidentally tried to give her a blood transfusion with the incorrect blood 🩸 type. I was eventually delivered naturally; but my mother was two small to actually do this safely.
My next brother was born via caesarean, & the next two were 5 weeks & 4 weeks premature; so small enough to be delivered safely.
Epilepsy is still a very mysterious condition, and there is a whole spectrum of different types & causes.
An invisible condition... and the worst part of it is when people react in fear around you.
The people who disliked either had their phone upside down or they hate to see people in pain, in thick and thin I will support u guys!❤️
So cute. Hope the meds help her she gets better soon. God bless you guys
Crystal i have epilepsy too since i was born but it i wasn't diagnosis until i was 11years old at the end i found out i have 14 forms of epilepsy we have been told by a professor to wear a eye patch when traveling because of the sun
tony freddie spicer omg same
Im on a seizure medication for migraines, Topiramate idk if someone as young as Aurora can take it. I'm not going to lie it's made a huge difference in my life and I've been on it since I was 16 and I'm almost 32. A family friend has seizures and has been on it for a few years and it has helped.
Max is amazing!
Aurora dancing and 'hitting the woah' is cute!!!!
I have had epilepsy for 12 years diagnosed for 8 I had my first 80 minute episode when I was 5 I struggled for years to get diagnosed and get in the right meds extreme weight loss due to medication and to even understand the fact that I have epilepsy and now that I've had it for over 12 years I am doing very well and am an advocate for kids around my state and region in hopes of spreading awareness to break the stereotypes and help others understand so happy others are doing the same to show that we are just like any other person with a few special quirks
Hi Aurora!!!! I also have epilepsy and I’m getting a medical id and a seizure Watch (new diagnosis) and I’m taking medication as well!!! Bless u Aurora!!!
From,
Gracie May
Omg... Aurora is so cute! God bless her
Aww poor baby girl ! I feel bad for lil ones that have to go thru so much its just heartbreaking 💔 ive went thru alot with my 2 oldest boys growing up. Their now 20 and 19 but my 19 yr old needs a kidney transplant but were in the beginning of the process of a transplant and hes gonna be doing dialysis in the next few months which he wants to do at home so ill be hooking him up and everything for that. Its hard as a mother to go thru these things but we have to do what is needed to keep our children healthy and well. I love u guys and ill keep sweet Aurora in my prayers 🙌 Shes just the cutest lil girl ❤️
I just wanted to comment 3 years later as someone who lives in a place where growing cannabis at home is legal and quite common, I have never heard of anyone using pesticides on their plants as they are typically used for consumption. Most professional growers (even those who grow just of CBD and not the THC) says that using pesticides can actually damage the plants since they are so fragile.
Hey crystal do tou have the epilepsy mat they are brilliant my son has had 3 seizures at night since we haave had it and its notified me every time and waiting on the embrace watch to come love your vlogs and your family are amazing xx