MY CHILD HAS EPILEPSY || You are not alone
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- čas přidán 28. 08. 2019
- I just wanted to bring to light this condition and share my story. I want you to know you are alone and that we all are in this together. Here is the continuation of our story.
- Jak na to + styl
Hi Elle, I hardly ever leave comments on videos but wanted to reach out. I'm a member of the group that didn't grow out of epilepsy. I didn't need surgery, but if I go off my meds I will have a seizure. I have the classic tonic clonic seizures. I had my first seizure at 13. It took us awhile but through trial and error we learned my major triggers were lack of sleep, high stress and not eating enough protein. All of that to say that even if your daughter doesn't grow out of it, it's still possible to have an awesome life with epilepsy. I'm 40 years old and have been married for 15 years and have a 9 year old son. I'm so glad you pushed to see an epileptologist. An epileptologist in my 20's changed my life and took me off Depakote (which controlled my seizures but had hideous side effects) and put me on Keppra (you are right about it being a tough drug to adjust to but it controls my seizures w/out the side effects of Depakote). One of the best things my parents did was to talk through all of my feelings and let me feel however I wanted to feel about being epileptic, especially after having a seizure in public. They also never treated it like it was something to hide (back in the day people were always surprised when we were honest and treated it as a fact of life). I don't want to write a novel, but if you ever want to talk to someone who has been through it I'm here. Sending healing thoughts to you and your family!
I so relate to you, I was diagnosed with the same form of epilepsy when I was 13 with sleep deprivation as the trigger. I am on medication for life as any attempt to come off leads to a seizure. I am on Sodium Valporate. It was not talked about much when I was young, so it is great that more people are speaking about it. Best wishes
May God bless you and thank you for sharing your story .
Thank you for sharing this. I relate to your story as well. So glad yours are under control!
God Bless you ❤️!
💜💜I'm so glad to hear you've done so well!💜💜 So glad you've done so well over t he years, despite those (they sound miserable!) tonic clonic seizures.
She can most definitely be the 10 percent! Speak it! Pray it! The Lord is with you on this! Hang in there mama!
Nothing is too big for God! He is our healer and are strength. Glad you handed it over..now believe for your miracle. Much love love Elle
Elle, Praying for our Heavenly Father to keep your precious baby girl wrapped tightly in His loving arms during this difficult time. Praying for you and your hubby also. Claim it in the name of Jesus!!!
I am praying for you. As a mom to a special needs daughter I understand the absolutely overwhelming emotions you feel. It is not easy to make hard choices for the best interest of your child. You never know how strong you are until you have to fight for your child. ALWAYS trust your gut. No matter what. I am praying for Gray too💕💕💕
You and your family are in my thoughts and prayers Elle. Miracles do happen and hope is never wasted.
Good for you for fighting so hard. I’m glad you finally found a doctor who can help.
I am crying. Love and healing to you. My nephew has epilepsy. He was a healthy 8 year old when he had his first seizure. My sister lives this life, he is now 25 years old. He can not be alone. He has had many brain surgeries, and is always on different medication's to try to control.
Oh Elle. I'm so very sorry. My heart breaks for you and Grey. I can't imagine how hard this is on you and your husband.
My mom had epilepsy, and it was never easy to watch her go through an episode.
Sending prayers to you and your family. Please give Grey a hug for me. I'm sending hugs to you. ❤😥🙏🙏
@Makayla True thank you so much for your kindness. My mom has been gone for over 10 years, (she had early onset Alzheimer's), but how very sweet of you to reach out. Wishing the very best to you. ❤
God bless you and your family, Elle. May you find the “peace that passes understanding.”
I’m so sorry you guys are having to deal with this ❤️❤️❤️ I’ve had 3 seizures and the doctors could never tell me what caused it. But I can’t imagine what you guys are going through with how many seizures she’s having. There’s this documentary called weed by Sanjay Gupta. It’s from cnn and it’s on CZcams, there are 4 parts. In the first two parts it focuses on two little girls with severe epilepsy who try medical marijuana (high cbd very very low thc) and it worked better then any meds they had tried. I don’t know if it’ll work for her but I thought I would mention it just in case. Praying for your family and their health ❤️❤️❤️
Iluvmakeup
Yep, low THC and high CBD, I know this helps immensely. But I do take 3 meds also. Just got the third one added because I'm still having seizures. Not often though. I did have a doozy of one a few months ago. There's all kinds of different seizures. I call them little ones and big ones. I get both, the big ones I call are the blackout kind. I don't notice the little ones most times, but my husband knows when I'm having one. I can feel the big ones comin on. It's scary. Luckily, my husband has been home for my bad ones. They seem to happen at night mostly, which is so bizarre.
How wonderful of you to share this I will keep you in my prayers
Your daughter has the greatest champion in you and your husband
Sending you love and hugs
Lifting up your daughter as well as you and your family in prayer and will keep you in my prayer list.
Oh Elle...my heart goes out to you! You're an amazing Mommy!! Hugs & prayers love♡
💖💖💖
Crying watching this mama:(
I can’t even imagine what you’ve gone through (all of you). I am praying for you and your daughter...and your family. I’m so sorry Elle...I’m sending you all my positive energy and love right now💜ALL of it!
Elle turn it over to God and pray a lot, there is nothing God can’t cure, I’m feeling your pain🙏
The pain in your voice is so sad to hear. I am praying for a course of action that leads to a symptom-free, happy life for your baby girl.
My life was devastated when my 16 year old daughter ,who had just graduated from modeling school, came down with the severest form of Multiple Sclerosis. We were told that she had 2 weeks to live,but her christian pediatrician told us to try a controversial medical procedure from Australia that involved a low dose of kemo. It rebooted her system. So don't be afraid to try some of the different/alternative forms of medication. She has gone from a vibrant teenager to a child (mentally) of about 12, but her brain IS healing. She is now 30! I will never stop believing that God has a plan for her future. Never stop believing that God has a plan for her future as well. We touch people with our lives whether we know it or not. Someone is always watching. Thank you for sharing. You are in my prayers. Much love from Northeastern, North Carolina!
Rachel Howard amazing thank you for sharing
We had a similar experience after a vaccination at 15 months. You are your child’s best advocate. God Bless
Aww Elle, keep strong. With a mama like you she will always be okay xxx
Oh my goodness, you are in my prayers. Last year my son had his first seizure at 4 that lasted 5 minutes at school. He was diagnosed with a grey matter heterotopia. He too is on Keprah. He has not had a seizure since but I understand your exactly how you feel.I too would be turning over EVERY stone. Before he received his diagnosis, the doctor's said his EEG was abnormal and he could have a tumor or congential defect. Dear goodness, that was one of the worst days of our lives. I researched every children's hospital near us. We were so thankful for the heterotopia diagnosis.I pray your daughter will be the 10%Hugs!Ana
Ana Lynch prayers for your son
Elle, have you seen the Netflix Diagnosis series. The second episode is on a young girl with seizures. I haven’t finished the episode but I immediately thought of you. One for the seizures and/or submitting your daughters case to the New York Times.
Your family is in my prayers. CBD all the way. I have seen people almost cured instantly on cbd
Keep searching Mama. Listen to your gut!
April Coker I actually just posted a comment on here about the medical marijuana. It almost cured my daughter’s friend, who suffered from severe seizures due to a brain cancer. She quit all meds, took the CBD oils & now is in remission. A miracle walking! CBD is a game changer
@@marybodnar4749 what type of CBD....I need to know exactly what kind bc what I bought does nothing. The real deal isn't legal here but idk if that matters ty in advance 😘✌
@@Michelle-007 if you look on You Tube for Natural health Resources she is absolutely Pro CBD and she recommends a quality 1 on there that's worked for me for back pain she also gives you guidelines for dosing. Hope this helps
Lisa T
@@lisatucker3432 thank you so much!! I'm on it!!😘👍🏻👍🏻🙋♀️
You are so brave... thank you for sharing.. My prayers are with you and your family.
My little sister had her first seizure in her mid 20s.. currently she takes Lamictal and CBD drops.. the CBD has helped her tremendously.. 💕
Oh my sweet Elle, thank you so much for sharing your journey with baby girl Grey.. I’ve been here with you for a long while now and hearing what y’all are going through brings tears and a heavy heart. 🙏 sending prayers and positive thoughts that Grey 🧸 will be that 10% and that the doctors figure out the right medications to keep her seizures under control. Stay strong momma and Grey will be strong too. We are all here for you, even though you don’t actually see us we are all family.. 💖🙏😘🌸Xoxox
Alexandria Cosentino we all are the Elle squad family
My niece had epilepsy as a child but as she grew into her teenage years and older they stopped all by themselves.
Terri Reyes
My mother did the same thing.
I'm sorry you have to go through this. I'm at a loss for words. Lots of love & prayers sent to you and your family.
My baby brother (31 years young) had type 2 uncontrolled seizures. He has lived a difficult and challenging life for 21 years. A life full of hospital visits, special ed, and insecurities to leave home for fear of a seizures or to wake in an ER afraid. In 2009 he went to Cleveland Clinic, and had a brain surgery that would change his life more than we could ever have hoped for. He has 10 years seizure free October 15th. He drives and is learning to work, and be independent. Which is so very much more than we could ever have imagined for him. He’s grown so much in 10 years, and we are all forever grateful to Cleveland Clinic (Dr. Gonzalis and Dr. Gupta) that healed him so he is alive, and living a full life today.
I'm sorry this is something your family is going through and the diagnosis I'm sure is just scary!
Don't ever apologize for being scared or like you're not allowed to be upset simply because it could be worse. This is not something that any child should ever have to go through and as a Mother, I'd be scared to death in your shoes.
I'm speaking from personal experience, as 5 years ago I was diagnosed with a debilitating neurological condition that will affect me for the rest of my days. Yes, my symptoms and struggles could be worse, but it's also something that scares me every single day, simply because you never know what could happened.
I'm so glad you strongly advocated for a specialist, again from personal experience, getting the RIGHT answers is literally the difference in life and death. You have every right to worry and feel for your daughter. It's so hard to not be able to heal your child, or yourself, and I completely understanding you taking a step back and basically give it to God. She's blessed to have such a wonderful mother! This is a big deal and it's your reality right now. You're allowed to cry, to hurt, to be angry! Take some time for yourself and your daughter to just have a few fun, no medical involvement days eachmonth, as this will help her to accept her condition and not feel like she's defected or less than because of her medical condition. After watching your videos, listening to you talk about your family, your daughter and to hear the caring in your voice tells me that you guys will get through this and you and your little girl will be stronger for it! Dont give up hope and Let Go and Let God. My family will keep you all in our prayers. Hugs, comfort, and Love to you and your daughter.
Brandi Rubio prayers for you .💙💚💙
I’m sorry she’s going through this! You are doing all the right things! Sending healing prayers and love and hugs to you all!🙏🏻🙏🏻💞😘
Oh Elle I’m sorry! I’m crying with you. Keep fighting momma! You can do got this. Hugs to you and your beautiful family.
Mighty brave to put this out there. It's so tough to have a child that has a chronic condition like this. I too have had something happen to my daughter and the most important thing to do is take care of yourself too. I didn't and ended up getting sick. That is not good for your family. My daughter has a friend in her twenties that has epilepsy and thankfully she is on meds and is living a great life with her little boy and husband. There is hope but at her young age, we feel helpless. I don't know if you believe in counseling but maybe a pediatric behavioral health specialist can help through this. My heart breaks for you but I feel things will get under control soon.
Hi Elle, I've been a pediatric nurse for many years and had a patient who failed medication treatment and parents put her on keto diet and slowly helped bring the seizures under control and her quality of life improved significantly. All my love and prayers!
She is so lucky to have you to fight for her as any Mamma Bear would! Hang in there! as a mother, I know how much it hurts to have your child hurt. We send good vibes, hugs and prayers.
I am so sorry. It breaks my heart. I truly hope your baby pulls thru and gets healthy.Thanks for sharing your pain and fears with us. Sending you lots of ❤️🤗❤️🙏🏻
I was diagnosed with Epilepsy when I was 2 and had a Brain Tumor surgically removed when I was 8.
23 years Seizure free.
It’s shocking a Neurologist couldn’t help your Daughter when they cured many Epileptics.
Hi Elle i'm from Scotland my daughter was born at 28 weeks and had the fight of her life then at 18mths she had her first seizure she had numerous EEG done over the years and nothing ever showed up she had a MRI done it showed she had a scar an inch big back left temporal lobe she started on sodium valporate for a few years then they changed to topiramate (Topamax) i feel you i would cry myself to sleep worrying about it i was consumed by it all they wouldn't tell us either if she had Epilepsy we new she had it then at the age of 14 and another EEG and there it was first time it reared its ugly head she is now 29 in sept and has been seizure free for a good few years she's still on her meds, know that i am thinking about you all listening to you brought it all back and your right your not alone sending prayers and strength for you all xxx
My heart goes out to you and prayers for continued strength you are wonderful parents for pushing to get answers. Lots of love for your family.
When I read the title my heart sank! I am grateful you have answers. I hope that your adorable daughter will flourish with this condition. You are in my prayers :) Your love for her shows in the fight you have fought for her. I am happy to hear that you have the issue up to God, He is mighty!
God Bless your heart for opening up, I shed alot of tears...the heartbreak and sadness is real it shows, I feel the Lord will ease your pain and your sweet baby girl! Sometimes it's hard for youngins to describe the sick feelings from euphoria after exhaustion or gymnastics etc. I was that child but 40-45 yrs ago I was one of 6 children and they didn't take me seriously plus they all had braces on all the others and told me they couldn't afford to get me "fixed", and be happy I have perfect teeth....I'll be 54 soon and the worst seizures was when i was pregnant I spent it in the hospital, had so much stress, under weight never ate meat and gave birth at 104 lbs..I was 21 with a tiny baby boy. It wasn't until I was 30 that I had a massive attack in my sleep, both sides terrifying.....I'm that 1 in a million you read about bc all these yrs I also had a tumor growing. It also came back 3x...so 3 skullbase surgeries but by completing removing things on my bad side the other side picked up eventually. This is how I went deaf in 2002. The advanced technology out there now to treat your daughter you'll find, I promise. She's probably experiencing vertigo before and after but can't explain what it is and is a horrible nonstop feeling....I know when I'm going into one, that my 1st sign and my vision goes, eyes I cannot control and that's all I remember......BUT, bc I have renal failure and am still fighting Melanoma, but Nephrologit says I can't take any meds, none! Special diet too. I think back to the ppl that picked on me and I knew I was sick, my Grandfather was our town's only Dr.....go figure! I will put your daughter and her STRONG parents fighting for their child life and well being on our chapel's prayer list. Believe in the power of prayer, it is true, a lot of us are alive telling you our stories! Sending you huge comforting hugs, constant prayers and positive powerful thoughts your way!! Your super strong for letting us know about this and that makes me love & admire you all the more, stay strong Elle!!😘💖💕💖🙏
#ELLESQUAD
Sending love and prayers for all of you! You are an amazing mom and you all are fighters!! Prayers! Love to you!
You are an amazing mom! Prayers for your sweet girl 🙏🏻. Also sending prayers for you and your husband🙏🏻
You are an amazing mother and my heart goes out to you and your family.
You are not alone either, Elle. I have been a nurse for over 40 years, a Mom for that long and a grandma. I’ve cared for people with all kinds of things but by far, THE most difficult of all has been when one of my kids was really ill. I almost lost my daughter 3 years ago (she’s doing very well now) and I was in “Mom” mode big time. Overdrive. We can’t help it. Like you did, I finally realized that I had done all I could do and I gave it to God and figured he knew the outcome and would place the right people in our path. And he did. And I had to learn to manage this so that I wouldn’t fall apart. I also wanted to be a positive role model for my girls and their kids. The one thing that has always amazed me is how well kids do emotionally when they are faced with something. They accept so much easier than most adults. I know how much you hurt for your daughter. Life is not fair but it can make us stronger, kinder and wiser.. I will keep you guys in my prayers. What a lucky little girl to have a loving mom like you. Sue
Thank you so much for sharing this video!!! I'm glad after such a long journey and so many sleepless nights and exhausting days and I'm sure arguing with many providers as you advocated for her that you have the answers. Continue to push and argue when needed love. My mom had to do the same for me and I'm now almost 33 with epilepsy and uncontrolled seizures by medications alone. I am disable because of this and other conditions that tend to occur with epilepsy. I didnt grow out of it as I had hoped and wished and have it for life. I went untreated for 15 years due to doctors not wanting to listen to my moms concerns and my mom being scared of ridicule when speaking up and fighting for me. Good luck as you begin your journey and prayers are being sent. Its actually a good thing that there is a focus point where the seizures begin. If needed that focal point can be removed. ❤💕
Sorry to hear about your sweet baby, Elle. I’ll add her to my prayers. Thank you for sharing. Blessings to you and your family. ❤️🌞
Yes! I believe that the body can heal itself!!! Stay positive, girl! You're an amazing mama! xoxo
Elle, I am a school teacher and I just had s student go through this! Last April he had a seizure in my classroom. After much testing, he was diagnosed with epilepsy. We just started back to school in August. He is in 5th grade and doing great. Prayers for your family.
Elle, I am deeply touched by you. I am 54 yrs. old. Had seizures over and over since 17 till 2o. I was in the Israeli military service (mandatory in Israel) and had a grand mal seizure infront of a big group of souldiers. It took me 4 yrs, and a angel Doctor to get the right mediction that stabelised ne with very little side affects. I am a Social Worker for 30 yrs.Married with my partner also almost 30 yrs. Have to healthy children in their twenties. My parents always set me to believe I am capable to deal with everything. It made me to cope but while my B.A. studies Iwas not yet stable and the meds made me awfully sleepy. In the long run, I have a full life, I do about everything It seens you are going through your journey and finding things out on the way. You are wise and intelligent, you will do the right things. What at least is in your hands. Leora from Israel.
Thinking of you and the family. Stay strong mama, so sad as a mom when our kids are sick or going through things. Your not alone and your doing a great job!
Sending so many good thoughts and prayers for your sweet girl, your whole family, and her medical team.
Thank you so much for sharing this, Elle. I am struggling with a son who has ADHD. Not the same, but similar in that the path that you expect your child to take has to be altered--at least for now. He is in the middle of elementary school, so grades are starting to be important and we are struggling to keep up--among other issues. I think it is so important as a mom to keep fighting--even when you get discouraged. It sounds like she is a fighter and it sounds like you are a fighter. Don't get discouraged; stay positive--even when it seems that you are looking right at proof that it is never going to get better. Have faith!
My nephew recently passed with epilepsy. Spoke to his mom started his college math homework and a grandmal took him to heaven within 0.5hrs. The epilepsy foundation has lots of people all over. I encourage you to teach out to them an have coffee with a loving person in your area that is traveling your same rough road. Taking helps, idea sharing helps
Thinking of you and your family, best wishes to you xx💞💞
My heart goes out to you and your family. I have always liked you because you are so real in your approach to beauty. Take care of yourself and have some down time during this stressful time.
We also struggled to get a diagnosis for my son - he was 5 at the time. He'd wake us up saying his eyes felt funny, and would literally zonk out for 45 minutes as a time. Then we struggled to find the correct medication - some gave him terrible rashes, others did absolutely nothing to prevent the seizures. Our journey went from hospitals, doctors telling us he will never live a normal life, telling us he will forever be a burden to us... We fought for him by researching schools, therapy, whatever we could do to help him live a better quality of life. We found a special school in our region (we live in South Africa) where I got involved in every day life at the school, helped wherever I could - just to be as close to him as I could. Today he is a healthy 17 year old young man, had a clean EEG in February and is almost weaned off all his meds...
My heart just overflows hearing your story and knowing the journey you and your family are on. Don't let anyone tell you: oh, it could've been worse - this is YOUR journey, this is YOUR reality! Keep allowing yourself that grace, keep the positive thoughts, the prayers, even the tears when you need them 💗 most of all, keep fighting, mama bear...
sending you a huge hug!!!
Thank you for sharing and for your vulnerability as we need to know there are others in the struggle. I've been in your shoes--not knowing what the future holds. You are doing the right things and my prayer is that you find what works for your daughter. Believing she is in the 10%! Life storms have expiration dates and you will get to the other side!!
You're amazing for sharing this video. It has been going on in my family for the last 2 years. I am so sorry, you have to know you're an amazing mother.
And thank you so much for sharing this particular moment of your life. Pls do keep us updated. Hugs. God bless you and give you His strength.
Oh Elle I’m so sorry you’re going through this! I will pray for your daughter to grow out of this and heal soon. Hugs to you all!
Awe Elle I am so sorry to hear this. I remember when my kids were little I always prayed to God that if something bad had to happen that it would happen to me and not them. I don’t know anything about this condition but I do know that they are always working on cures for things and so it’s always possible that they could come up with something for this. I sympathize with the way you feel because you can’t fix this for her right now. As parents we always want to make everything better for our kids But your love and support will get her through this and hopefully over time things will improve. You’re an amazing mom. Stay strong for her and know that my thoughts and prayers are with you.
Sorry to heard that but i will praying for you daughter. Trust God He is good.He will take care your daughter. God bless you.
Keep your chin up Elle all of us have you guys in our thoughts stay strong girl xx
Oh my sweet mama. You are not alone. You are such a good mama. I have been where you are. It is scary and hard and you are doing great. My girl has CRMO-she gets bone lesions. Some kids grow out of it, some don’t. It can get very scary and debilitating. She’s been in remission for about 3 years. 🤞 She is now almost 14 and is a true fighter. She is a strong young woman who has deep empathy for others in pain and a willingness to fight for herself to fulfill her needs and reach for what she wants. I wouldn’t wish any illness on a child, but it has given her something she never could have gotten otherwise. That even I couldn’t have taught her. She is my hero. Your little one will see how her mama fights for her and she will come to understand that she is worth fighting for. You are instilling strength in her that is rare. Hold to that when it is hard. We also went through what you did with gymnastics, only for us it was dance. She had to quit about a year after her diagnosis. It just hurt too much. She has a lesion in her ankle. It took a girl who had hour long dance parties in her room and danced her way through life and made her into a girl who could barely walk. We’d get funny looks everywhere because she’d be a 9 year old in a grocery cart at target or in a stroller at Disneyland. But that’s what she needed so we did it. She still isn’t back in dance and we’re still trying to get her strength back. She’s also been struggling with anemia since she started her period. But we’ll get there. There will be losses, but the gains will make them feel small. There were many nights when I yelled at God and was angry for inflicting such pain on one so young and innocent. But as I’ve watched my daughter grow and the seen the woman she is becoming I am in awe of her. And I know her disease had a lot to do with that. I’m not saying she wouldn’t be a strong wonderful girl without it, just that sometimes things that are awful can lead to something good.
Know that you are doing just fine. You are strong and you are ok. It will be ok. I know god is watching over you and your family. Lean on him and he will help you know what to do. Everything has a purpose, even if we can’t see it right now.
Keep fighting for her. And you. Take care of you and your marriage. Make time for it. (I’m sure you already do).
There are new medical discoveries being made every day. You never know. There may be a cure down the road! We’ve been looking into ozone therapy as well as stem cell therapy. I’ve been using them to treat the damage to my brain from Lyme disease as well as damage from a Chiari malformation I had. There’s a lot of good research out there about it. Just suggestions for future reference if you haven’t already looked into it. I’m considering using both on my girl to help her get her strength back. Especially since the side effects are minimal if any. We also bought a Joov red and infrared light to use at home. Well start that soon.
My love and prayers go out to you. You are wonderful and a wonderful mama. Hang in there. You’ve got this.
mrsmorgs5 prayers for you daughter 💚💚
Oh Elle. i'm so sorry. Your family is in my prayers! I'm so sorry this is such a tough season. Sending prayers and light.
Sending prayers your way to you and your family and your daughter can be that 10%!
Bless you. Keep doing what the doctors offer. Read up on the ketogenic diet when time permits. Been there...
Sending you mental/virtual hugs today. You are a stellar mom, and your little girl is so fortunate to have you battling alongside her. I am not a mom, but I work in healthcare and spend all day, every day, side by side with patients battling fear and disease. This tough environment has at times made me feel like a warrior, and, alternatively, brought me to my knees. Over time (27 years) I have come to process so many thought patterns differently. First, I wish more people were as brave as you, and would broadcast their struggles and experiences. It ABSOLUTELY helps others in their struggle, and if nothing else, helps you download the incredibly difficult experiences you are enduring. Voice it. Let it out. Give your head some space and peace. Also, I really admire your perseverance, and willingness to cross the lines of eastern/western medicine. An open mind is most receptive to goodness and wisdom. My thoughts and prayers are with you and your family. You are an extremely brave person, and the fact that you are willing to open your life to others via media is not only admirable, but astounding. I hope you are able to find help, answers, peace and comfort for your little girl and your family as well.
Thank you for sharing Elle. God will carry it for you. My thoughts and prayers are with your sweet family. You are an awesome mom and a fighter. Hang in there and know that you have a lot of people out here with you always.
God bless you all. You have surrendered, which is wise, as we are not ultimately in control. Grace is showing through you as your love for your family and others. Love is all that matters. xo
I will keep you and your daughter in my prayers. I know this is a scary situation for you both. Stay strong and continue to give this to God. He will help you! ❤️
I’m so sorry that you’re going through this. It’s heartbreaking when it your child because you feel helpless. I know you would do anything for her including trading places with her. My prayers go out to you and your family.
Elle, I am so sorry you are going through this! I will keep your daughter and you and your family in my prayers!😘
Poor baby, praying for healing and to find the right meds quickly. ❤️❤️
Hia! 🤗😘😍
I am sending all my love! ❤❤❤❤
I'm sending you blessings, love and support Elle. Hopefully you beautiful girl will outgrow this condition one day and everything will be ok. ❤🙏
Thank you for sharing your story, your journey with us. Please keep us posted. Praying for your family Elle! Sending tons of 💗💕
Energy Medicine is a healing option to explore. The body has an amazing capacity to heal. God does his best work in the dark. Love to you ❤🙏
I’m praying for you both, and most definitely it maybe in his plan for her to be in that 10%. Oxoxo Stay strong 😘
Glad you are so real! Praying for your sweet girl and strength for you.
Hi Elle, wow I'm so sorry to hear this. You have me in tears. I know it's really hard to see your baby girl suffering and going through all of this so young. No one deserves this but keep your head up. She might be one of the 10%. In the medical profession there is alot of doctor's that suck and don't go the extra mile to find out what's wrong. I have health problems and have had multiple surgeries. It's really hard, heart breaking, feeling helpless but things need and will get better. I have her and your family in my prayers. Also thank you for sharing this with us. You're 100% correct that life isn't perfect. It's not all about makeup. Anything that I can help you with. Please let me know. I hope she gets better soon and that the seizure slow down.
Hang in there momma! Always advocate for our babies! Thoughts and prayers with you and your family💗
God is great...yesbody heals itself❤
All love from Denmark❤
Great video! I wish you and your daughter the best! My daughter has been struggling with an epilepsy/non-epilepsy diagnosis for past 3 years and she’s 38! It’s been a very challenging period, not only for her, but her husband and 2 young children as well. She’s had some very discouraging encounters with numerous medical professionals not to mention the countless failed meds.
If she’s struggling with issues during exertion, make sure she’s fully hydrated and her electrolytes are in balance.
Hang tough!!
Karen Kouzmanoff
I'm sorry about your daughter. I so understand. I was diagnosed with TLE when I was 51, then in March, they found out it was in both lobes, after I did an EEG at home over a three day period And according to my doctor, I've had it my whole life. It's been a little over two years now. I'm still experimenting with meds to find the right one. I'm still having seizures. Even a session of three blackouts in less than a minute. This was a couple months ago. Thank goodness my husband was home.
Prayers for your daughter.
Sherry Krook thank you so much, Sherry! So sorry to hear of your continued struggles and hope you find the right meds! Take good care of yourself!
Prayers for you both ..... thank you for sharing
I’m so sorry to hear this about your little girl. You have so many ppl that love you and support you. Love and prayers!
I’ll keep you in my prayers, Elle! She’s blessed to have a great mother.
I’m so sorry Elle. She’s healed by the mighty powers of God..
Didn’t know what you were going through... You are a strong woman.. Just do the best in your situation and leave the rest to God.. Just keep the faith..❤️❤️❤️
Joy Luck she is the strongest woman I know. I am so proud of her
Thank you for sharing your family’s story with us and for letting us be a part of your prayer circle. Praying for a miracle for your little love and for peace of mind for you and your husband!
Thank you so much for sharing your heart. You are an amazing mom pouring all your heart, soul, intellect into your precious little one. We weep with you and pray with you for divine direction, healing, hope, rest, great drs and nurses, peace for your daughter as she walks through this. You are not alone.. it’s been a big week for you hearing this news. It’s a lot to take in. We trust the lord with the bigger plan and for next steps.. we pray for a hedge of protection over you and your family as well sweet times of respite. Know you are loved
Please know that tons of prayers go up daily for you and your beautiful family. May God comfort you during this season. She is lucky to have such a diligent mother (parents). We love you and are always here. You brought this #ellesquad together. Now we are here to hold you up ❤
Your daughter is not alone. I have temporal lobe epilepsy, had it all my life. I have it in both lobes.
Prayers for the right meds. It's not always easy finding the right one. I'm on three different anti-seizure medications. And one of them was just added to the cocktail to amp up the Lamictal.
It is scary. I ain't gonna lie about that.
My doctor is a neurologist/epilepsy specialist. I'm lucky in that aspect.
MRI's and EEG for me and the EEG confirmed it. I did the three night EEG at the hospital.
Don't be discouraged about the meds, it does take a while to find the right one. Getting exited and stuff like that will cause a seizure.
Sherry Krook prayers for you
Marie Stopa
Thank you 💞
Thank you so much for sharing this, sending lots of love and prayers to you and your family. ❤️
I will add you and your family to my prayer list. I’m so sorry. You are a great mama!!
Menorah Hospital, Overland Park, KS has a Keto Clinic for treating epileptics. Epileptics have had great success following Keto food way of eating. FYI 🙏🏼❤️❤️
I'm glad you mentioned this. Keto was developed for children with epilepsy. Dr. Berg, at Dr.Berg.com has a very healthy version of Keto and has hundreds of helpful videos, also recipes. God bless you all and I'll be praying for you all!
Praying for your family, especially Grey. The Lord has a plan.
I am so sorry to hear about your daughter. I am so glad that you fought for the Dr. She needed. I have wondered how she has been doing. You are a Wonderful Mom and it is so hard to see your child go thru something like this I lost my grown Son 1 1/2 yrs ago and it is so hard to watch them suffer. I am praying they can help her with the right mediation or thru surgery. Please keep us up to day. God be with your daughter and your family.xoxo
Oh Elle. I am so sorry you are going through this, Sending many thoughts and prayers to you, your husband and Grey. Glad you found this new doctor. 🙏
I’m so sorry, stay strong! Did you try CBD? I will be praying for you 😢
So many hugs and prayers to all of you! You are an amazing mom!! Stay strong and continue to be her amazing advocate! Hugs!! You are amazing!
Thank you for sharing, it is heartbreaking when we have children who suffer. I am so sorry that your sweet girl is going through this. You are correct, you must fight for your children. When my son who was extremely healthy all his life had severe leg pain at age 19, the doctor kept sending me home with him, however, I knew there was something wrong and I demanded that they test him for a DVT in his leg, and I refused to take him home before they did. Fortunately, they tested him and unfortunately he did have a DVT and eventually threw s pulmonary embolism and age 19, truthfully if I had not pushed the doctors he may not be here with us today. He is on blood thinners for life, but he’s doing OK and I am very hopeful for you that your daughter’s situation well have a good outlook in the end. I will keep you in my prayers.💜🙏🏻
Elle, I'm so sorry to hear that you, Grey, and your family have been through several extremely traumatic years. My heart, prayers, and every good wish go out to you now and every day... What a phenomenally loving and strong mom you have been in advocating for her need to be treated by an epileptologist. I've been a neuro patient for 25 years, though with mild MS, and I'd never heard of this specialty. But having watched an interview on the CURE website earlier, you are the best...and Grey will get better. I'm so sorry Keppra and the other meds have not provided a reliable medical solution, but some of the surgical approaches can help to turn things around in some cases. I'm sure Grey's epileptologist will be an excellent source of information and help with that, should they find it potentially helpful. You mentioned neuropsychological evaluations, too. They're performed by neuropsychologists to formally assess cognitive abilities (e.g., memory, concentration, and problem solving), mood and personality, and it's my understanding that they take an individual's age and other factors into consideration. Elle, I think that with medicine advancing as quickly as it is, we've got plenty of reasons to be hopeful. Sending you all lots of love! ❤️🧡💛💚💙💜