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 …
Elle, so sorry to respond to this video this late. I have epilepsy that started as a child but no one realized it. It didn't create the typical seizures people are familiar with seeing. It wasn't until I was 20 that the traditional seizures began. I knew for years there was something wrong but the description I could give didn't make sense to doctors for 15 years. Finally when the diagnosis was made it took quite a while to become adjusted to medications and lifestyle. The test your daughter will have in October will be very helpful and there's no physical pain involved. The game skills used will help the doctor to know what parts of her brain are being effected, how she has developed coping skills, and where it will cause strengths or weaknesses in daily life. Things like if she takes in information better my reading or hearing or if she excels with tasks done with the right or left side of the brain. It's all good information so that you can guide her in ways she will be most successful. She may not grow out of it, I didn't, but information you will learn will help her cope, that decrease stress, and decrease symptoms. It is a scary thing to go through for all involved but a life of normalcy can develop so hang in there. If she is limiting herself let her because she likely senses a problem not visible. Let her feel safe during the discovery period. Life with epilepsy can be wonderful. Prayers for your family. 🙏 💝
Dear Elle !!!! You are a wonderful person inside out my heart goes out for you and the little princess will always always keep u in my prayers 🙏all the prayers will get answered from all the people who love you and although we have not met in person but there is a bond between us ….have faith in what you believe as that’s ur biggest strength ❤️
From One Momma to Another Momma. Sweet Elle, I will be praying for your Daughter and family. I know this effects all. My own personal story is I have lost a son who would of been 37 now and I have a 33 year old daughter who has severe chronic RA. She has lost all here lining around her joints and has been through so many meds and nothing has helped except " CBD OIL" ( medical grade) She has to go along way to get it, so I am not sure what state you live in but if it is available to her, I would hope you would give it a try. I know of two other parents who have went thought this journey as well and it worked just like a miracle. I know your heart is breaking, and I understand to see your child hurting . Give it to God, All of it ! Huge Hugs , lots of Love and Prayers <3 I hope you will also find a support group with " like circumstances" <3 <3 <3 XO
Sorry, Elle, without saying too much more. My son is 35. So when I see a Mom out there, it is human nature to let you know we are for you. Whatever it takes to help your daughter. Same time, she is a gift as you know. Chin up. You look great just as you are. My eyes are so sensitive , I always want to flinch when I see you ladies put makeup on the white of the eye, looks great. Sorry mixed up message along with my heart goes out to you, all parents that struggle with conditions. You are not alone. Good Lord is with you. I saw the suggestions about the Me to diet. Think if it was that simple , you would be singing too us ..Many well wishers. 100 percent give it to God, and do the best you can. May you be blessed with Peace and grace through your daughters life. God Bless, Debra N 💓🙏🌺
Elle, First you do honest great reviews. We all have things we like and don't. As far as your little girl I wish you the very best. I had a friend I grew up with that frequently I did not regular play on the playground so she would have a friend. Yet there were times I spaced and went to play marbles. And a close friend that is an adult who has grand mall seizures. It took a long time to find the right medicine. I commend you for the Grace and love to show the real part of your true concern of life. Yes, many diseases, conditions. I will keep you in prayers. 🙏🙏🙏💜🌼😘💓💛.
Hi Elle. I wish I could give you a big hug. My daughter had her first grand mal seizure at 17, in high school. She too failed a number of medications. It took a while to get her seizures under control. She is aware that she is 'going there', but once the seizure starts, she is not conscious. I have sat on the floor with her many ( too many!) times, waiting for the seizure to end. As you know, it is extremely difficult. However, she eventually got her meds customized to work for her. She is now 28. She was hoping that perhaps she was growing out of it, and wanted to be able to cut back on the amounts of meds she takes. She recently had another EEG and there is far too many signs of epilepsy still showing, so no cutbacks for her. That set her back emotionally. But I just spent some time with her tonight, and she is working through it and thinking positive. So, you are not alone. We live in Vancouver, BC. I'll send a prayer your way tonight. big hugs
My heart goes out to you, I get it I had a sick child and it was the worst thing ever. I am praying for her and you God will answer your prayers. Much love and Thankyou for sharing, you are awesome 😘😘
My heart breaks for you and your family. But you are doing everything right. Seeking the answers and following doctors recommendations and never ignoring your instincts when it comes to what’s best for your child and family. Please do not think you are alone. You have many people that are praying for you and your family right now. Just because other people “have it worse” does not minimize what you are going through. You are not alone. God bless and keep fighting. Love and prayers.
Dear Elle, it had been increible to see how much love you have for your kid. Here in Mexico, there is a Child, with a case severe. They ask a judge to import an oil fron USA or Canada. They make a club call #PorGrace and getting this Oil, the child is doing better. You may would like to see more of this case in: https://www.bbc.com/mundo/noticias/2015/09/150904_mexico_nina_enferma_autorizan_marihuana_ep, I am sorry is in Spanish, but you may be interesting. I hope, thing will get better.
I am praying for you and your little girl. My husband had his 1st generalized seizure at 27 while we were on a cruise ship. Put us on a path of unending seizures and poor response to meds. We had an amazing epileptologist but it truly took an act of God. It has been 16 yrs since diagnosis but 7 yrs since last seizure. He still takes meds but a lot less than before. I still wait on the next one, especially when he is stressed or overexerted. BUT GOD….keep the faith. YOU ARE NOT ALONE. 🙏🙏🙏
As a nurse, I could relate to all the terminology but it does not make it any easier. You are very well spoken regarding medical information. What an awful condition! So unpredictable and scary. You are so strong Elle which again doesn’t make it any easier. Poor baby. People have no idea the day to day anxiety. He will take it and give you peace. Please don’t feel the need to apologize that others have it worse, YOUR situation is awful and you can grieve. Sincerely, my prayers tonight will be for you 🙏🏻❤️Mary Ellen
Elle Thank you so much for sharing all of this information with us about your family and your challenges and your daughter and you’re right dealing with the healthcare system is difficult and you have to advocate for yourself and for your family and I am so very happy that you got to a doctor that has been able to provide relief provide direction and give you some sense of normalcy back sending you so much love thanks for all you share
Elle…..I hope you read this post and that you might give some thought. I’ve just been reading about the Ketogenic diet and wondered if it was something worth investigating for your daughter. You may have already looked into it but it might be worth asking a few questions. Here’s a little more information and good luck. Much love ….. Sandy 🥂💕
I have empathy and prayers for you and your family. My daughter kept telling me she would have “moments of dizziness” at school at it was like her arm went across her”. I took her to all kinds of specialist and was told she is fine. I had not observed it myself. At age 12 we where sitting in a restaurant and she had a focal seizure….the emergency room said it was a migraine. Four days later i wake up at 4:30 am to my daughter in a convulsive seizure (frothing out of the mouth and cyanotic]. I was terrified and screaming to God not to take my baby. Our lives have been a roller coaster since. We where blessed when a friend of mine suggested NYU Dr. Devinsky. and staff. Thank the Lord her seizures have been under control since then. Again, i pray for your child and family and that your prayers are answered.
Glad to hear you are looking into the Ketogenic Diet for her. Many get relief from Epilepsy by reducing inflammation in the brain. Carbohydrates create inflammation. Fat/ketones are a much cleaner fuel source for the brain. I do this diet for my arthritis etc with great relief. Highly recommend fb page Optimal Ketogenic living….OKL Raymund Edwards is extremely knowledgeable. Heart goes out to guys! ♥️ Maybe try these guys near to you… https://www.medisliminc.com/services/keto-diet
Elle….I sat here in tears because you were telling our experience in certain ways. Our oldest son who was 3 at the time, had a seizure while recooping from the stomach flu. I also was alone and called 911. He had to have a spinal tap and MRI also…no pet scan. (also he was afraid of anyone in a white coat for several years after!) He had several more seizures while in the hospital….was put on phenobarbital. After leaving the hospital he never had a seizure again. We were told that there is sometimes a part of the brain that does not completely mature while in utero and that it would take some time but it could heal (mind you, this was over 30 years ago). Long story short, when he was about 6 they started weening him off the phenobarbital and he did fine…never seized again and is a father of 3 today. (interesting that his daughter had a seizure…nothing like his but nonetheless)…..Your daughter can grow out of this. Keep in mind that you will never know this side of heaven what all your holistic help for your daughter spared her from…..keep your eyes on Jesus who loves this little girl far more than you could ever love her….keep them (your eyes) off of the wind and the waves (of the worse that could happen), or you will sink! xoxo Praying for your sweet one and for wisdom for you as you continue this journey……
Hi, Elle. I wanted to reach out with my support for you and your family. I started having seizures when I was 12 or 13 years old. Most of my generalized seizures happened while I was sleeping, so nobody knew it was happening. I also have focal seizures, which are more common for me but were no less disruptive as a teenager who just wants to be “normal”. It took a couple of years, but it was finally determined that my epilepsy is directly related to my menstrual cycle. The estrogen spike is the trigger. I am 50 years old now and preparing for menopause. The scary part is that the estrogen spikes are less predictable now, so I have to be very careful about taking my medication, and this type of epilepsy is not well researched (it only affects women and is usually well controlled with medication so why bother, right?) so there are no studies showing whether or not I’ll be medicated forever or just until I don’t have a period anymore. How about HRT? It’s estrogen, right? Probably not a good idea…
I am well controlled. In fact, I haven’t had a seizure in almost 30 years! I take a very old, yet very reliable medication; Dilantin. I’ve taken this drug for a little less than 25 years, I have regular blood work to check levels (which they say you don’t need with some of the newer drugs) but it’s working for me. I have 2 children and was medicated and closely monitored through both pregnancies, neither child has any adverse effects from my medication but I made the decision not to nurse either of them because nobody could tell me what the effects of getting the medication through nursing would be (Not enough research…). I can tell you, too, that I feel better when I keep my diet closer to Keto. My brain just feels clearer, more focused as sometimes during “that time of the month”, even with my medicine, I feel fuzzy or unfocused.
From the time I was diagnosed, my parents allowed me to talk to the doctors and tell them how I felt or what was happening because neither of them could relate to what was happening. In the video you relate that gymnastics makes her head feel “funny”… encourage her to find and use words like “tingling” or “numb”, “sharp” or “dull”. If she understands what it feels like when your foot or arm falls asleep, ask if that’s what she feels so you know she means “tingling”. Different seizures, feel differently and it can help if something changes if she can describe how it feels. For example: Just before I have a seizure, the area around my left eye gets numb and my eyelid feels like its snapping open and closed, rather than gently blinking. If it’s a focal seizure, the snapping gets faster, the left side of my face tingles and my head twitches to the left so hard it hurts my neck, like my head is trying to spin around. After 5-6 seconds, it stops, 2-3 more seconds and I am completely re-oriented like it never happened.
It’s difficult for you all right now trying to find the right treatment, medication, regime… anything that will help her. Keep trying, but make sure you’re giving things enough time. Keto diet takes at least 6 weeks of strict adherence to show any effects. Strict means one chocolate chip cookie could destroy weeks of progress. It can work wonders, it’s very hard to maintain but, in my opinion, it’s less disruptive than changing medications or surgery, if it works for your daughter. Please, please, please don’t let her limit herself because of her seizures. Let her try everything and more. I stopped playing sports because I was afraid I would have a seizure, I stopped socializing with my high school friends because I was afraid I would have a seizure… I missed a lot because I was afraid of “what if”… I hope you and she are braver than I was. Best of luck and lots of love to your family. RC
Elle, I live in Michigan and there is a doctor here that has done a ton of research on this. His name is Dr. Barkley he’s in Detroit. Please look him up. He is world known. My brother has epilepsy and has since he was 5 and our family has done everything. He is 48 now. I’m praying for you and your family. One thing I can say is don’t ever settle,, some doctors can be lazy. ❤️
Thank you for sharing to help others. You are such a caring, loving person, it’s very obvious. I hope that the doctors wok find the answer for your daughter soon. I watched a show on TV years ago about a family that moved to Colorado so that their young son could be treated with CBD oil as medications weren’t working. The boy was seizing throughout the day and marijuana brought it under control! Please look into this as others have suggested as well. Prayers are on their way. Take care.
Hi Elle. Im so sorry your family is going through this. I know surgery is always scary but there are so many advances in medical technology. Please look up VNS therapy. My brother works with this device and has heard/ seen many success stories with using this device for epilepsy when medications were not controlling the seizures. From what i understand they do not go up into the brain but it connects to a nerve in the neck that runs up into the brain and sends signals for seizure activity to stop. The decive sits under the skin like a pacemaker. Of course i do not know everything about the device and types of seizures etc but i have heard the success stories from my brother and thought i would share.
Hi Elle, I’m so sorry you and your family are going through this. I sincerely hope you all find the best way forward. You mentioned looking into the Ketogenic diet, which I’ve heard has helped children who do not respond to drug therapy. You may already know of it, but the Charlie Foundation has a website you can go to with lots of information on this.
thank you so much for sharing. my husband is 67, never out grew it. he has been completely controled for years with depakote. it did make him gain weight, so one time his nuero did try him on something else. he ended up on three meds at the same time, that did not work, so went back on depokote. it worked perfect again. they work on meds all the time. glad you got a epileptologist, they are so hard to get into.
Hello Elle, my heart is full for you. May GOD grant you mercy and grace during your journey to find the best possible resolution for your daughter. I am so glad you found a specialist to support you. Never give up, keep searching.
Find a Reiki Practitioner it's healing energy work. It's worth a try. Sending you all lots of prayers and healing energy. 🙂
Elle, please watch this video: https://www.youtube.com/watch?v=v0S3IJi2s8U&feature=em-uploademail
Elle, so sorry to respond to this video this late. I have epilepsy that started as a child but no one realized it. It didn't create the typical seizures people are familiar with seeing. It wasn't until I was 20 that the traditional seizures began. I knew for years there was something wrong but the description I could give didn't make sense to doctors for 15 years. Finally when the diagnosis was made it took quite a while to become adjusted to medications and lifestyle. The test your daughter will have in October will be very helpful and there's no physical pain involved. The game skills used will help the doctor to know what parts of her brain are being effected, how she has developed coping skills, and where it will cause strengths or weaknesses in daily life. Things like if she takes in information better my reading or hearing or if she excels with tasks done with the right or left side of the brain. It's all good information so that you can guide her in ways she will be most successful. She may not grow out of it, I didn't, but information you will learn will help her cope, that decrease stress, and decrease symptoms. It is a scary thing to go through for all involved but a life of normalcy can develop so hang in there. If she is limiting herself let her because she likely senses a problem not visible. Let her feel safe during the discovery period. Life with epilepsy can be wonderful. Prayers for your family. 🙏 💝
Dear Elle !!!! You are a wonderful person inside out my heart goes out for you and the little princess will always always keep u in my prayers 🙏all the prayers will get answered from all the people who love you and although we have not met in person but there is a bond between us ….have faith in what you believe as that’s ur biggest strength ❤️
God Can Handle this <3 Please keep us updated too <3 <3 <3
From One Momma to Another Momma. Sweet Elle, I will be praying for your Daughter and family. I know this effects all. My own personal story is I have lost a son who would of been 37 now and I have a 33 year old daughter who has severe chronic RA. She has lost all here lining around her joints and has been through so many meds and nothing has helped except " CBD OIL" ( medical grade) She has to go along way to get it, so I am not sure what state you live in but if it is available to her, I would hope you would give it a try. I know of two other parents who have went thought this journey as well and it worked just like a miracle. I know your heart is breaking, and I understand to see your child hurting . Give it to God, All of it ! Huge Hugs , lots of Love and Prayers <3 I hope you will also find a support group with " like circumstances" <3 <3 <3 XO
Sorry, Elle, without saying too much more. My son is 35. So when I see a Mom out there, it is human nature to let you know we are for you. Whatever it takes to help your daughter. Same time, she is a gift as you know. Chin up. You look great just as you are. My eyes are so sensitive , I always want to flinch when I see you ladies put makeup on the white of the eye, looks great. Sorry mixed up message along with my heart goes out to you, all parents that struggle with conditions. You are not alone. Good Lord is with you. I saw the suggestions about the Me to diet. Think if it was that simple , you would be singing too us ..Many well wishers. 100 percent give it to God, and do the best you can. May you be blessed with Peace and grace through your daughters life. God Bless,
Debra N 💓🙏🌺
Elle,
First you do honest great reviews. We all have things we like and don't. As far as your little girl I wish you the very best. I had a friend I grew up with that frequently I did not regular play on the playground so she would have a friend. Yet there were times I spaced and went to play marbles. And a close friend that is an adult who has grand mall seizures. It took a long time to find the right medicine. I commend you for the Grace and love to show the real part of your true concern of life. Yes, many diseases, conditions. I will keep you in prayers. 🙏🙏🙏💜🌼😘💓💛.
Hi Elle. I wish I could give you a big hug. My daughter had her first grand mal seizure at 17, in high school. She too failed a
number of medications. It took a while to get her seizures under control. She is aware that she is 'going there', but once the
seizure starts, she is not conscious. I have sat on the floor with her many ( too many!) times, waiting for the seizure to end.
As you know, it is extremely difficult. However, she eventually got her meds customized to work for her. She is now 28. She
was hoping that perhaps she was growing out of it, and wanted to be able to cut back on the amounts of meds she takes. She
recently had another EEG and there is far too many signs of epilepsy still showing, so no cutbacks for her. That set her back
emotionally. But I just spent some time with her tonight, and she is working through it and thinking positive.
So, you are not alone. We live in Vancouver, BC. I'll send a prayer your way tonight. big hugs
I'm glad you opened up to us! My daughter has a rare condition called Transverse Myelitis. I love watching you and thank you!
I am so sorry. In my mind, I am with you and your family. There are very good training opportunities for this disease today. I hug you virtually.
Also love homeopathy healed my daughter 🥰
My heart goes out to you, I get it I had a sick child and it was the worst thing ever. I am praying for her and you God will answer your prayers. Much love and Thankyou for sharing, you are awesome 😘😘
My heart breaks for you and your family. But you are doing everything right. Seeking the answers and following doctors recommendations and never ignoring your instincts when it comes to what’s best for your child and family. Please do not think you are alone. You have many people that are praying for you and your family right now. Just because other people “have it worse” does not minimize what you are going through. You are not alone. God bless and keep fighting. Love and prayers.
Dear Elle, it had been increible to see how much love you have for your kid. Here in Mexico, there is a Child, with a case severe. They ask a judge to import an oil fron USA or Canada. They make a club call #PorGrace and getting this Oil, the child is doing better. You may would like to see more of this case in: https://www.bbc.com/mundo/noticias/2015/09/150904_mexico_nina_enferma_autorizan_marihuana_ep,
I am sorry is in Spanish, but you may be interesting. I hope, thing will get better.
I am praying for you and your little girl. My husband had his 1st generalized seizure at 27 while we were on a cruise ship. Put us on a path of unending seizures and poor response to meds. We had an amazing epileptologist but it truly took an act of God. It has been 16 yrs since diagnosis but 7 yrs since last seizure. He still takes meds but a lot less than before. I still wait on the next one, especially when he is stressed or overexerted. BUT GOD….keep the faith. YOU ARE NOT ALONE. 🙏🙏🙏
As a nurse, I could relate to all the terminology but it does not make it any easier. You are very well spoken regarding medical information. What an awful condition! So unpredictable and scary. You are so strong Elle which again doesn’t make it any easier. Poor baby. People have no idea the day to day anxiety. He will take it and give you peace. Please don’t feel the need to apologize that others have it worse, YOUR situation is awful and you can grieve. Sincerely, my prayers tonight will be for you 🙏🏻❤️Mary Ellen
Praying for you and your family!
Elle Thank you so much for sharing all of this information with us about your family and your challenges and your daughter and you’re right dealing with the healthcare system is difficult and you have to advocate for yourself and for your family and I am so very happy that you got to a doctor that has been able to provide relief provide direction and give you some sense of normalcy back sending you so much love thanks for all you share
Elle…..I hope you read this post and that you might give some thought. I’ve just been reading about the Ketogenic diet and wondered if it was something worth investigating for your daughter. You may have already looked into it but it might be worth asking a few questions. Here’s a little more information and good luck. Much love ….. Sandy 🥂💕
https://www.health.harvard.edu/blog/ketogenic-diet-is-the-ultimate-low-carb-diet-good-for-you-2017072712089
I have empathy and prayers for you and your family. My daughter kept telling me she would have “moments of dizziness” at school at it was like her arm went across her”. I took her to all kinds of specialist and was told she is fine. I had not observed it myself. At age 12 we where sitting in a restaurant and she had a focal seizure….the emergency room said it was a migraine. Four days later i wake up at 4:30 am to my daughter in a convulsive seizure (frothing out of the mouth and cyanotic]. I was terrified and screaming to God not to take my baby. Our lives have been a roller coaster since. We where blessed when a friend of mine suggested NYU Dr. Devinsky. and staff. Thank the Lord her seizures have been under control since then. Again, i pray for your child and family and that your prayers are answered.
Glad to hear you are looking into the Ketogenic Diet for her. Many get relief from Epilepsy by reducing inflammation in the brain. Carbohydrates create inflammation. Fat/ketones are a much cleaner fuel source for the brain. I do this diet for my arthritis etc with great relief. Highly recommend fb page Optimal Ketogenic living….OKL Raymund Edwards is extremely knowledgeable.
Heart goes out to guys! ♥️
Maybe try these guys near to you… https://www.medisliminc.com/services/keto-diet
Elle….I sat here in tears because you were telling our experience in certain ways. Our oldest son who was 3 at the time, had a seizure while recooping from the stomach flu. I also was alone and called 911. He had to have a spinal tap and MRI also…no pet scan. (also he was afraid of anyone in a white coat for several years after!) He had several more seizures while in the hospital….was put on phenobarbital. After leaving the hospital he never had a seizure again. We were told that there is sometimes a part of the brain that does not completely mature while in utero and that it would take some time but it could heal (mind you, this was over 30 years ago). Long story short, when he was about 6 they started weening him off the phenobarbital and he did fine…never seized again and is a father of 3 today. (interesting that his daughter had a seizure…nothing like his but nonetheless)…..Your daughter can grow out of this. Keep in mind that you will never know this side of heaven what all your holistic help for your daughter spared her from…..keep your eyes on Jesus who loves this little girl far more than you could ever love her….keep them (your eyes) off of the wind and the waves (of the worse that could happen), or you will sink! xoxo Praying for your sweet one and for wisdom for you as you continue this journey……
Hi, Elle. I wanted to reach out with my support for you and your family. I started having seizures when I was 12 or 13 years old. Most of my generalized seizures happened while I was sleeping, so nobody knew it was happening. I also have focal seizures, which are more common for me but were no less disruptive as a teenager who just wants to be “normal”. It took a couple of years, but it was finally determined that my epilepsy is directly related to my menstrual cycle. The estrogen spike is the trigger. I am 50 years old now and preparing for menopause. The scary part is that the estrogen spikes are less predictable now, so I have to be very careful about taking my medication, and this type of epilepsy is not well researched (it only affects women and is usually well controlled with medication so why bother, right?) so there are no studies showing whether or not I’ll be medicated forever or just until I don’t have a period anymore. How about HRT? It’s estrogen, right? Probably not a good idea…
I am well controlled. In fact, I haven’t had a seizure in almost 30 years! I take a very old, yet very reliable medication; Dilantin. I’ve taken this drug for a little less than 25 years, I have regular blood work to check levels (which they say you don’t need with some of the newer drugs) but it’s working for me. I have 2 children and was medicated and closely monitored through both pregnancies, neither child has any adverse effects from my medication but I made the decision not to nurse either of them because nobody could tell me what the effects of getting the medication through nursing would be (Not enough research…). I can tell you, too, that I feel better when I keep my diet closer to Keto. My brain just feels clearer, more focused as sometimes during “that time of the month”, even with my medicine, I feel fuzzy or unfocused.
From the time I was diagnosed, my parents allowed me to talk to the doctors and tell them how I felt or what was happening because neither of them could relate to what was happening. In the video you relate that gymnastics makes her head feel “funny”… encourage her to find and use words like “tingling” or “numb”, “sharp” or “dull”. If she understands what it feels like when your foot or arm falls asleep, ask if that’s what she feels so you know she means “tingling”. Different seizures, feel differently and it can help if something changes if she can describe how it feels. For example: Just before I have a seizure, the area around my left eye gets numb and my eyelid feels like its snapping open and closed, rather than gently blinking. If it’s a focal seizure, the snapping gets faster, the left side of my face tingles and my head twitches to the left so hard it hurts my neck, like my head is trying to spin around. After 5-6 seconds, it stops, 2-3 more seconds and I am completely re-oriented like it never happened.
It’s difficult for you all right now trying to find the right treatment, medication, regime… anything that will help her. Keep trying, but make sure you’re giving things enough time. Keto diet takes at least 6 weeks of strict adherence to show any effects. Strict means one chocolate chip cookie could destroy weeks of progress. It can work wonders, it’s very hard to maintain but, in my opinion, it’s less disruptive than changing medications or surgery, if it works for your daughter. Please, please, please don’t let her limit herself because of her seizures. Let her try everything and more. I stopped playing sports because I was afraid I would have a seizure, I stopped socializing with my high school friends because I was afraid I would have a seizure… I missed a lot because I was afraid of “what if”… I hope you and she are braver than I was. Best of luck and lots of love to your family. RC
Elle, I live in Michigan and there is a doctor here that has done a ton of research on this. His name is Dr. Barkley he’s in Detroit. Please look him up. He is world known. My brother has epilepsy and has since he was 5 and our family has done everything. He is 48 now. I’m praying for you and your family. One thing I can say is don’t ever settle,, some doctors can be lazy. ❤️
Thank you for sharing to help others. You are such a caring, loving person, it’s very obvious. I hope that the doctors wok find the answer for your daughter soon. I watched a show on TV years ago about a family that moved to Colorado so that their young son could be treated with CBD oil as medications weren’t working. The boy was seizing throughout the day and marijuana brought it under control! Please look into this as others have suggested as well. Prayers are on their way. Take care.
https://www.google.com/amp/s/www.cbc.ca/amp/1.4130180
Hi Elle. Im so sorry your family is going through this. I know surgery is always scary but there are so many advances in medical technology. Please look up VNS therapy. My brother works with this device and has heard/ seen many success stories with using this device for epilepsy when medications were not controlling the seizures. From what i understand they do not go up into the brain but it connects to a nerve in the neck that runs up into the brain and sends signals for seizure activity to stop. The decive sits under the skin like a pacemaker. Of course i do not know everything about the device and types of seizures etc but i have heard the success stories from my brother and thought i would share.
Oh Elle. I am so sorry that you and your family are going through such stress. I will pray for you all.
Robin
Sending you so much love 😍.
Hi Elle, I’m so sorry you and your family are going through this. I sincerely hope you all find the best way forward. You mentioned looking into the Ketogenic diet, which I’ve heard has helped children who do not respond to drug therapy. You may already know of it, but the Charlie Foundation has a website you can go to with lots of information on this.
thank you so much for sharing. my husband is 67, never out grew it. he has been completely controled for years with depakote. it did make him gain weight, so one time his nuero did try him on something else. he ended up on three meds at the same time, that did not work, so went back on depokote. it worked perfect again. they work on meds all the time. glad you got a epileptologist, they are so hard to get into.
Hello Elle, my heart is full for you. May GOD grant you mercy and grace during your journey to find the best possible resolution for your daughter. I am so glad you found a specialist to support you. Never give up, keep searching.