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
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💕💕💕
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!!!
Hi Elle my heart really goes out to you sweetie. After spending such a long time over the years with you on TH-cam I can’t help but feel like you are a friend. I am so sorry for what you are all going through. As a mom when my kids are sick I would rather be sick myself then see them go through something awful. My daughters are adults and my oldest, Jennifer, had breast cancer last year and is on medication now to try and keep it from coming back that is not agreeing with her. I can really feel what you are going through. I was diagnosed with a chronic condition in 1996. I had it for a while and no one could figure out what was wrong with me. I saw all kinds of doctors, so I know how frustrating it must’ve been for you to have your daughter ill and not be able to get a diagnosis. Now that you do have one, you can move forward with treatment. Maybe you could think of that as a positive. Elle, you are doing the right thing by being proactive. That is very, very important. Another positive is leaving it to God like you did. I will certainly remember you and your family and of course gray in my prayers every day. Sending love and hugs, Trisha
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!
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
Oh Elle, there is strength in numbers!! I cannot imagine all of the people praying for you and your family. I will keep you & your family in my prayers.
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
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!!
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.
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!
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.
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’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.
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!
You FIGHT for your child Elle. Fight every step of the way for her. I would be proud to be a part of your Fight Club. God Bless you and your family. Its okay to talk, to cry, to scream when you need to. I got you. Saying prayers and sending you good love and thoughts.
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. ❤
Elle, Bless you. My daughter who is now 35 years old was born at 26 weeks and when she was a year old was diagnosed with cerebral palsy. She was only affected in her lower extremities but 35 years ago that was very difficult because schools were not equipped with handicapped access. Over the years she had a lot of surgeries to correct one thing after another. My point...my husband and I never coddled Kelly because we wanted her to be strong and have a great self image of herself. It was very hard as her mother to not coddle her but I’m so glad we didn’t because today she’s a wonderful, loving wife who is expecting her first baby. I too felt as you do now but know that many people will be praying for you and our medical care in the US is simply amazing. On another note...my uncle who died 30 years ago at the age of 80 had epilepsy his entire life. After a severe seizure he was given a medication that stopped his seizures entirely. I will add you to my daily prayers. Praying for you and your husband to have the strength needed to get you thru this journey as well as your precious daughter. 💕😘
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
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!
I'm sorry Elle. I'm happy you fought your way to a Specialist! Yes, keep the Faith love and I'm sure God hears all of your prayers and ours. There just may be that light at the end of what can be some very long tunnels in life but, I hope this this is one of those for your daughter. Stay positive, pray, and if up to it, might be a good time to get into a support group with others as it can be of help for all. My love, hugs and prayers to you and yours 🙏 (I've been out of town but back now, so sorry for delays)
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.
Hi Elle, I'm so sorry. This past year some personal challenges have come up in my life and I had no control over the outcomes. I'm not a religious person, but this bible quote became my prayer and mantra: "The Lord will fight for you, you have only to be still." Exodus 14:14. Sometimes in the midst of chaos, stillness is a gift. Keep fighting. And when you need to, be still. I'm sending you light and love, always.
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.. 💕
Prayers to you and your daughter. Thinking about you guys, glad she has an answer. Hope you can enjoy the happy moments with her. I have faith she is the 10%.
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
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!
You are an awesome parent. Keep the faith, say the wisdom prayer and let go of what you cannot change. Don’t make light, it is scary. Thanks for sharing
Oh Elle! My heart is so broken for you! I'll be praying for your baby girl! My son has a life threatening auto immune disease and I know the fear and the want to just have our babies be well. I love so much of what you said...you can't control it. Giving it over to God is THE best thing you can do. Thank you for always being the realest of the real. You are a true gem!! You keep being an advocate for your girl!! Much love and hugs to you!!!
I am praying for your precious daughter, you and your husband! You are exactly right to give yourself grace! When you mentioned people dealing with things more horrible, or bigger issues, remember that you are learning, coping, and living with your set of circumstances. You don’t have to apologize or justify your daughter’s situation to anyone. I also agree with you that you have to give it to God, to acknowledge you don’t have control over it or know how it will work out, but you are doing the very best for your daughter every day! It is obvious that you adore her and that you are a terrific mommy! Keep being the fighter, and your daughter will learn to be one too! She has a beautiful example and role model who is teaching her! Love to you!❤️
Love to your family! My stepson, 22 now, has severe autism (nonverbal, few fine motor skills,etc) with epilepsy. He also went to numerous doctors but eventually found one that helped. Since he doesn’t speak, it was a struggle getting a diagnosis because he couldn’t express how he was feeling. He is on quite a few meds that seem to work better than anything we tried. He is otherwise healthy & acts happy. In the end, that’s all you want for your child! Enjoy the healthy times & special moments!
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!
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.
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.
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
She is still your baby! You know her the very best! Be her advocate and go with your mama gut. As a special needs child’s mom that is the best advice I was given. It has gotten me through many tough procedures. Neuropsychology was amazing to us. It explained so many things and connected the pieces so well. Gave me real life things I could do to help my daughter daily. After all the tests
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.
Elle, you are a strong beautiful woman and your daughter is a part of you. I know you’ll fight for your child for the best treatment possible. Light, love & healing prayers. Never give up ♥️
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! ❤️
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
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.
Awww. My heart goes out to you. As a mom with undiagnosed conditions, I can’t even imagine how frightening it must be. You are an amazingly strong mom & person. I’m actually going to send you light.
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 TH-cam, 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.
Elle - thank God you pushed for answers - that shows your tenacious spirit and unending love for your daughter. It must have been so agonizing to keep hearing “she’s not sick enough”, yet finally a doctor says “she should have already had a PET scan.” That’s so heartbreaking that she is self limiting - no parent wants to see that. I’m glad you’re giving yourself grace but I don’t blame you for obsessing over it either. I’m so sorry your family is going through this. There’s a saying, something like “just because the person sitting next to me in the hospital has lost an arm doesn’t mean my broken finger doesn’t hurt.” I’m not sure where I heard it (maybe you) but YOUR situation should never be minimized because others might have it worse. I know you’re trying to see the good and be thankful it’s not “worse” but please don’t apologize for being upset. Our hearts go out to you both.
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 can’t even imagine how hard this is for all three of you. My heart and prayers go out to you, your husband, and your daughter. Being a parent is so hard, especially when your child looks to you for protection, and you’re powerless and helpless to do anything. Perhaps part of the reason you were meant to move to the Denver area is because of the two Children’s Hospital campuses here (yes, I live in the southern Denver area too). If there is any way I can be of support to you and your family, I’m here! Nicole H.
Thanks for sharing this. My uncle has epilepsy so I have known about the disease since I can remember. It has been difficult on him and at times our family, but as long as he stays regular with his medication and diet he is good. You and your husband know your girl best, keep educating yourself and keep fighting for the best care! Way to go momma! Praying for your family.
Oh Elle. My heart goes out to you. We hurt so much when our child hurts. I will pray for you and your little girl. I have two friends who have children with epilepsy. Anything that affects our child is terrifying. Thank you for sharing your story. Your little girl is so blessed to have a mom like you who cares so much and is willing to fight for her. Praying for that 10 percent. 🙏🏻💚🌷
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.
You got this Elle. Because you have an entire squad praying for you and your daughter. Know that as hard as this is, you will get through it. Just comfort your daughter and be her advocate as you are already doing. Children tend to be more resilient than adults at traumatizing events like this. She is lucky she has you as her mother and cheerleader. Much love.
I have no idea what the “proper” thing to say would be......Thank you for sharing ......thank you for putting this out there for everyone to view and discuss ...I hope you are able to link with others that can share additional information / answers with. Love you a million! Take care of you and your family!!!!!!!
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.
You are a precious woman, in all ways. l will lift your daughter and all your family up in prayer. I pray that you will have peace during these times and claim her healing. The awareness of this “condition” is vital in all communities. It removes the fear factor from onlookers and arms them with the knowledge of how to “act” and how not to “react.”
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
@@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
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.
You are not alone dear Elle. Thank you for sharing your pain. You have many praying for your family and sweet girl. Getting to the right doctors is a major step. Keep fighting and don't give up on yourself. I know you won't give up for your sweet girl. I have been a follower of you for a long time because of your personality and honesty. I am 68 and have seen a lot in my world. God does have a plan for you and your daughter. I truly believe that. Perhaps sharing your story will save another child. God is amazing like that.
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. ❤💕
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.
Love and light to you and your family, especially your baby girl. Thank you for your openness with us all. Because we are here for you in whatever way possible. I've become invested in you and your work so it's nice to know the personal side to your life. We all care and are praying. She is a fighter, and so are you. But it's ok to feel all the feels you are. Normal. Please keep us updated. Love Maryjo😘🙏
Elle - God is a BIG God! Give yourself GRACE and like you said, you've given your daughter and her situation to God now trust Him. You are an amazing mom!!! Prayers from Texas sweet friend!
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..❤️❤️❤️
Elle ~ Thank you for sharing this journey with your daughter. It is heart wrenching when our children are sick - the helpless feeling - the pain of watching them suffer - the relief when something works - the sorrow when it fails....and the astonishing pride when we see the strength that God has placed within our child - to endure and fight - to overcome. May God's continuing healing presence and power be with your daughter - May God's wisdom guide and direct the doctors and medical staff - May God's abundance grace and strength be yours as your carry her - discern for her - fight for her - and love her to pieces..... There are many advancements and possibilities - take heart - her life will be full of hope, love, peace, joy and purpose....she may have to manage her condition - or she may heal completely - either way - she is a precious child of God and her future will be awesome.... May God's blessings be evident in your journey... You are loved - you are not alone!
Stay strong. I'm 62 and was diagnosed at age 11. I've had more eegs than I can remember, I've changed meds as new ones came out. (I was one that didn't grow out of it) My seizures got worse after my heart surgery and I had to increase my medication, but after a couple years I was able to back down a little. I've lived a full life. Epilepsy has never held me back... but I have always been aware that I have to live within certain healthy habits. Maybe I'll live longer than others as a result 😁. You're doing the right things. Good medical team, best meds, good attitude, healthy lifestyle, and lots of love and support. I'll be praying for you and her. Have faith. I do. ❤🙏
Hi Elle - I understand this very much. I witnessed this in my brother when he was a child and much later, in my mom starting in her early 60’s. It is terribly frightening! I tell you...there is nothing as strong as a mom determined to help her child. My heart & especially strength, go out to you and your family. You are right....you are doing “everything” and more, to help your daughter. Thank u for sharing with us. You are not alone.
What a good Momma you are! It is so hard to watch our children go through any kind of pain...heart-wrenching! I will be praying for her and you and your husband as you seek what is best for her. I do believe that God can 100% heal also! Love to you!
Oh wow Elle!!! I’m so sorry you all are having to go through this. Being the mama of 4 kids I’ve had my share of scares and heartache. No matter their age they are always are babies. Sending so much love 💗 and healing energy 🙌🏼. Please keep us posted on your sweet girl!! Xoxo
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
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.
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!!!
Good for you for fighting so hard. I’m glad you finally found a doctor who can help.
Hi Elle my heart really goes out to you sweetie. After spending such a long time over the years with you on TH-cam I can’t help but feel like you are a friend. I am so sorry for what you are all going through. As a mom when my kids are sick I would rather be sick myself then see them go through something awful. My daughters are adults and my oldest, Jennifer, had breast cancer last year and is on medication now to try and keep it from coming back that is not agreeing with her. I can really feel what you are going through. I was diagnosed with a chronic condition in 1996. I had it for a while and no one could figure out what was wrong with me. I saw all kinds of doctors, so I know how frustrating it must’ve been for you to have your daughter ill and not be able to get a diagnosis. Now that you do have one, you can move forward with treatment. Maybe you could think of that as a positive. Elle, you are doing the right thing by being proactive. That is very, very important. Another positive is leaving it to God like you did. I will certainly remember you and your family and of course gray in my prayers every day. Sending love and hugs, Trisha
God bless you and your family, Elle. May you find the “peace that passes understanding.”
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!
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
Oh Elle, there is strength in numbers!! I cannot imagine all of the people praying for you and your family. I will keep you & your family in my prayers.
sherie light yes there is strength in numbers
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
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!!
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.
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!
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.
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.
Lifting up your daughter as well as you and your family in prayer and will keep you in my prayer list.
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 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’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.
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!
You FIGHT for your child Elle. Fight every step of the way for her. I would be proud to be a part of your Fight Club. God Bless you and your family. Its okay to talk, to cry, to scream when you need to. I got you. Saying prayers and sending you good love and thoughts.
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. ❤
Elle, Bless you. My daughter who is now 35 years old was born at 26 weeks and when she was a year old was diagnosed with cerebral palsy. She was only affected in her lower extremities but 35 years ago that was very difficult because schools were not equipped with handicapped access. Over the years she had a lot of surgeries to correct one thing after another. My point...my husband and I never coddled Kelly because we wanted her to be strong and have a great self image of herself. It was very hard as her mother to not coddle her but I’m so glad we didn’t because today she’s a wonderful, loving wife who is expecting her first baby. I too felt as you do now but know that many people will be praying for you and our medical care in the US is simply amazing. On another note...my uncle who died 30 years ago at the age of 80 had epilepsy his entire life. After a severe seizure he was given a medication that stopped his seizures entirely. I will add you to my daily prayers. Praying for you and your husband to have the strength needed to get you thru this journey as well as your precious daughter. 💕😘
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!🙏🏻🙏🏻💞😘
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
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!
I'm sorry Elle. I'm happy you fought your way to a Specialist! Yes, keep the Faith love and I'm sure God hears all of your prayers and ours. There just may be that light at the end of what can be some very long tunnels in life but, I hope this this is one of those for your daughter. Stay positive, pray, and if up to it, might be a good time to get into a support group with others as it can be of help for all.
My love, hugs and prayers to you and yours 🙏
(I've been out of town but back now, so sorry for delays)
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.
Hi Elle, I'm so sorry. This past year some personal challenges have come up in my life and I had no control over the outcomes. I'm not a religious person, but this bible quote became my prayer and mantra: "The Lord will fight for you, you have only to be still." Exodus 14:14. Sometimes in the midst of chaos, stillness is a gift. Keep fighting. And when you need to, be still. I'm sending you light and love, always.
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.. 💕
Prayers to you and your daughter. Thinking about you guys, glad she has an answer. Hope you can enjoy the happy moments with her. I have faith she is the 10%.
You are an amazing mother and my heart goes out to you and your family.
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
We had a similar experience after a vaccination at 15 months. You are your child’s best advocate. God Bless
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!
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.
You are an awesome parent. Keep the faith, say the wisdom prayer and let go of what you cannot change. Don’t make light, it is scary. Thanks for sharing
Oh Elle...my heart goes out to you! You're an amazing Mommy!! Hugs & prayers love♡
💖💖💖
Oh Elle! My heart is so broken for you! I'll be praying for your baby girl! My son has a life threatening auto immune disease and I know the fear and the want to just have our babies be well. I love so much of what you said...you can't control it. Giving it over to God is THE best thing you can do. Thank you for always being the realest of the real. You are a true gem!! You keep being an advocate for your girl!! Much love and hugs to you!!!
You are an amazing mom! Prayers for your sweet girl 🙏🏻. Also sending prayers for you and your husband🙏🏻
I am praying for your precious daughter, you and your husband! You are exactly right to give yourself grace! When you mentioned people dealing with things more horrible, or bigger issues, remember that you are learning, coping, and living with your set of circumstances. You don’t have to apologize or justify your daughter’s situation to anyone. I also agree with you that you have to give it to God, to acknowledge you don’t have control over it or know how it will work out, but you are doing the very best for your daughter every day! It is obvious that you adore her and that you are a terrific mommy! Keep being the fighter, and your daughter will learn to be one too! She has a beautiful example and role model who is teaching her! Love to you!❤️
Aww Elle, keep strong. With a mama like you she will always be okay xxx
Love to your family! My stepson, 22 now, has severe autism (nonverbal, few fine motor skills,etc) with epilepsy. He also went to numerous doctors but eventually found one that helped. Since he doesn’t speak, it was a struggle getting a diagnosis because he couldn’t express how he was feeling. He is on quite a few meds that seem to work better than anything we tried. He is otherwise healthy & acts happy. In the end, that’s all you want for your child! Enjoy the healthy times & special moments!
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.
She can be in that 10%-positive thoughts and prayers coming your way. You are a great mom!
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
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.
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.
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
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.
She is still your baby! You know her the very best! Be her advocate and go with your mama gut. As a special needs child’s mom that is the best advice I was given. It has gotten me through many tough procedures. Neuropsychology was amazing to us. It explained so many things and connected the pieces so well. Gave me real life things I could do to help my daughter daily. After all the tests
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.
Talking about any issue with your child is so important and helps to lesson the stigma attached to any illness or disease.
Thanks for being so open.
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. ❤️🌞
Elle, you are a strong beautiful woman and your daughter is a part of you. I know you’ll fight for your child for the best treatment possible. Light, love & healing prayers. Never give up ♥️
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! ❤️
Poor little thing. She’s lucky to have you! Big hugs to you, mama, for being her champion!!
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.
Awww. My heart goes out to you. As a mom with undiagnosed conditions, I can’t even imagine how frightening it must be. You are an amazingly strong mom & person. I’m actually going to send you light.
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 TH-cam, 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.
Elle - thank God you pushed for answers - that shows your tenacious spirit and unending love for your daughter. It must have been so agonizing to keep hearing “she’s not sick enough”, yet finally a doctor says “she should have already had a PET scan.” That’s so heartbreaking that she is self limiting - no parent wants to see that. I’m glad you’re giving yourself grace but I don’t blame you for obsessing over it either. I’m so sorry your family is going through this. There’s a saying, something like “just because the person sitting next to me in the hospital has lost an arm doesn’t mean my broken finger doesn’t hurt.” I’m not sure where I heard it (maybe you) but YOUR situation should never be minimized because others might have it worse. I know you’re trying to see the good and be thankful it’s not “worse” but please don’t apologize for being upset. Our hearts go out to you both.
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 can’t even imagine how hard this is for all three of you. My heart and prayers go out to you, your husband, and your daughter. Being a parent is so hard, especially when your child looks to you for protection, and you’re powerless and helpless to do anything. Perhaps part of the reason you were meant to move to the Denver area is because of the two Children’s Hospital campuses here (yes, I live in the southern Denver area too). If there is any way I can be of support to you and your family, I’m here! Nicole H.
Elle turn it over to God and pray a lot, there is nothing God can’t cure, I’m feeling your pain🙏
Thanks for sharing this. My uncle has epilepsy so I have known about the disease since I can remember. It has been difficult on him and at times our family, but as long as he stays regular with his medication and diet he is good. You and your husband know your girl best, keep educating yourself and keep fighting for the best care! Way to go momma! Praying for your family.
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.
Oh Elle. My heart goes out to you. We hurt so much when our child hurts. I will pray for you and your little girl. I have two friends who have children with epilepsy. Anything that affects our child is terrifying. Thank you for sharing your story. Your little girl is so blessed to have a mom like you who cares so much and is willing to fight for her. Praying for that 10 percent. 🙏🏻💚🌷
Yes! I believe that the body can heal itself!!! Stay positive, girl! You're an amazing mama! xoxo
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.
Bless you. Keep doing what the doctors offer. Read up on the ketogenic diet when time permits. Been there...
You got this Elle. Because you have an entire squad praying for you and your daughter. Know that as hard as this is, you will get through it. Just comfort your daughter and be her advocate as you are already doing. Children tend to be more resilient than adults at traumatizing events like this. She is lucky she has you as her mother and cheerleader. Much love.
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.
I have no idea what the “proper” thing to say would be......Thank you for sharing ......thank you for putting this out there for everyone to view and discuss ...I hope you are able to link with others that can share additional information / answers with. Love you a million! Take care of you and your family!!!!!!!
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
You are a precious woman, in all ways. l will lift your daughter and all your family up in prayer. I pray that you will have peace during these times and claim her healing. The awareness of this “condition” is vital in all communities. It removes the fear factor from onlookers and arms them with the knowledge of how to “act” and how not to “react.”
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
@@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
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.
Sending so many good thoughts and prayers for your sweet girl, your whole family, and her medical team.
You are not alone dear Elle. Thank you for sharing your pain. You have many praying for your family and sweet girl. Getting to the right doctors is a major step. Keep fighting and don't give up on yourself. I know you won't give up for your sweet girl. I have been a follower of you for a long time because of your personality and honesty. I am 68 and have seen a lot in my world. God does have a plan for you and your daughter. I truly believe that. Perhaps sharing your story will save another child. God is amazing like that.
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❤
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. ❤💕
Sending prayers your way to you and your family and your daughter can be that 10%!
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.
Thinking of you and your family, best wishes to you xx💞💞
Love and light to you and your family, especially your baby girl. Thank you for your openness with us all. Because we are here for you in whatever way possible. I've become invested in you and your work so it's nice to know the personal side to your life. We all care and are praying. She is a fighter, and so are you. But it's ok to feel all the feels you are. Normal. Please keep us updated. Love Maryjo😘🙏
Keep your chin up Elle all of us have you guys in our thoughts stay strong girl xx
Elle - God is a BIG God! Give yourself GRACE and like you said, you've given your daughter and her situation to God now trust Him. You are an amazing mom!!! Prayers from Texas sweet friend!
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
Elle ~ Thank you for sharing this journey with your daughter. It is heart wrenching when our children are sick - the helpless feeling - the pain of watching them suffer - the relief when something works - the sorrow when it fails....and the astonishing pride when we see the strength that God has placed within our child - to endure and fight - to overcome. May God's continuing healing presence and power be with your daughter - May God's wisdom guide and direct the doctors and medical staff - May God's abundance grace and strength be yours as your carry her - discern for her - fight for her - and love her to pieces..... There are many advancements and possibilities - take heart - her life will be full of hope, love, peace, joy and purpose....she may have to manage her condition - or she may heal completely - either way - she is a precious child of God and her future will be awesome.... May God's blessings be evident in your journey... You are loved - you are not alone!
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 ❤🙏
Stay strong. I'm 62 and was diagnosed at age 11. I've had more eegs than I can remember, I've changed meds as new ones came out. (I was one that didn't grow out of it) My seizures got worse after my heart surgery and I had to increase my medication, but after a couple years I was able to back down a little. I've lived a full life. Epilepsy has never held me back... but I have always been aware that I have to live within certain healthy habits. Maybe I'll live longer than others as a result 😁. You're doing the right things. Good medical team, best meds, good attitude, healthy lifestyle, and lots of love and support. I'll be praying for you and her. Have faith. I do. ❤🙏
I’m praying for you both, and most definitely it maybe in his plan for her to be in that 10%. Oxoxo Stay strong 😘
Hi Elle - I understand this very much. I witnessed this in my brother when he was a child and much later, in my mom starting in her early 60’s. It is terribly frightening! I tell you...there is nothing as strong as a mom determined to help her child. My heart & especially strength, go out to you and your family. You are right....you are doing “everything” and more, to help your daughter. Thank u for sharing with us. You are not alone.
Poor baby, praying for healing and to find the right meds quickly. ❤️❤️
What a good Momma you are! It is so hard to watch our children go through any kind of pain...heart-wrenching! I will be praying for her and you and your husband as you seek what is best for her. I do believe that God can 100% heal also! Love to you!
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.
Oh wow Elle!!! I’m so sorry you all are having to go through this. Being the mama of 4 kids I’ve had my share of scares and heartache. No matter their age they are always are babies. Sending so much love 💗 and healing energy 🙌🏼. Please keep us posted on your sweet girl!! Xoxo