My son has been having seizures (ESES / LKS) since 2005. He has been on the keto diet for 5 years. At first I felt like the miracle worker trying to teach Helen Keller to eat with a fork (you can look up the clip on YouTube). Of course just like you we had reached the end, and realized that if we didn’t keep it up that we would probability lose him to status epilepticus. Thank God we at least saw fewer seizures in the first month.
My niece also has epilepsy -had her first seizure at 5 mos-and was worse from there. They were pretty bad and meds werent working @ all. When she was about 1 she was put on the Ketogenic diet-and evne though it was hard to manage at the beginning-and still is at time-her quality of life has increased drastically!! Before the diet she was like a newborn, not sitting unsupported, not even walking!-Now at 4.5 she's able to walk and almost run! (she also has mitochondrial disorder-low muscle tone)
I do a ketogenic diet for many reasons, here are some things that are real important for ME, in making this diet effective. 1. High level of ketones 2. Restrict carbs to very low levels, less than 20g. 3. Restrict protein levels to body requirements 4. Restrict fluid intake, this will increase ketone concentration. 5. Eat a SLIGHTLY subcaloric diet. 6. I eat a large percentage of calories from fat, about 70%.
I use MCT's, (coconut oil) occasionaly, but that stuff is rough on the gut.
I posted earlier about the celiac diet helping me & wanted to update that info, it helps but the smallest cross contamination or hydrolized wheat oil in my conditioner & I am sick for several weeks. So worse myoclonus & now ataxia symptoms increasing weekly. For adults no one discuses the ketogenic diet but I would love to try it but can find so little specific to adults. The doctors are so helpless that it feels like they have given up. I need to find the right one I know but it is so hard.
I ran out of room before I got to send my love and reguards to your little one, hope she finds continued improvement and I wish all of your family my sincerest best wishes.
Thank you. I hate that you are struggling. It is hard to keep cros contamination from happening. We did a gluten free diet for almost a year. I really think that was what made trying the Ketogenic Diet so easy for us to manage (all except the emotional part)
If you want to attempt the ketogenic diet you definitly need to find a neurologist who is familiar with the diet. If it is not followed carefully and done right there can be serious consequences. Definitly never do it alone.
Thank you, well it just seems like nothing is working for me right now. I want to try the Ketogenic diet but not sure of what all that will entail. I will let you know if I do and if it helps. All my best to you and yours, Pamela
Thats wonderful news about your daughter. Heather Riley is doing a little better after a very rough fall/winter. She is taking Felbatol and 3 other anti seizure medications. We hope to be able to reduce some of the medications.
Don't worry! Everything is going to be alright! Keep praying to God for protection! Here is the scripture on Matthew 7:7-8. Keep on asking, Keep on seeking, and keep on knocking! Don't know the verses of Matthew Chapter 7 verses 7-8.
You should get her tested for Celiac commonly associated with Myoclonic seizures. I have them as well. I would get thousands a day. They are a symptom of an autoimmune disorder. Mine are controled now by going on a gluten free diet, completely med free. I only had 2 today, a small flare up, but have gone a few months without any thanks to a strict wheat free diet. Worth looking into, it is s simple blood test. Search Celiac & myclonic, find a celiac specialist in your area & get her tested.
She was tested several years ago for celiac and went on a gluten free diet for a very long time ( I think about 18 months) we didn't see any difference. Our geneticist actually gave us lots of info about this. Thank you for sharing!
I am sorry she did not get the relief she needed from this. I am glad you are willing to try anything and keep looking for answers. I wish you all the best! Do not give up hope. Thanks for staying so strong and being there for her. I saw your video after I posted this earlier message, really sweet and moving. Dear child! I feel for oyu and her and your entire family and again hope you find the answers you seek. All my best, Pamela
I just wanted to give you a hug! We are currently on an natural treatment. The damage will always be there and so will the fear. God bless you and your beautiful daughter!
Riley is always in my thoughts. It must be heartbreaking to watch her go through all this. I hope you can find peace in knowing what decision to make!
Denae and Riley, what a touching and beautiful video. Riley is so brave and the smile she has is delightful. Best wishes as always and seeya at the forum.
My son has been having seizures (ESES / LKS) since 2005. He has been on the keto diet for 5 years. At first I felt like the miracle worker trying to teach Helen Keller to eat with a fork (you can look up the clip on YouTube). Of course just like you we had reached the end, and realized that if we didn’t keep it up that we would probability lose him to status epilepticus. Thank God we at least saw fewer seizures in the first month.
Chris
MrCnbwoodard 3 months ago
My daughter is starting this diet in the next few weeks... i am nervous and excited.. I am praying that this works.. so far nothing else has..
mariahemmett 5 months ago
God Bless You Heather...you're very special and God can do miracles....
ZZZZAS 7 months ago
I feel your pain..so beautifully explained...
I am a nurse to such a child...
anotheraoluser 1 year ago
my respects. My sister and I tried this years back. It is not eassy at all.
LI4E1 1 year ago
i want a bottle............................
kingty9313 1 year ago
My niece also has epilepsy -had her first seizure at 5 mos-and was worse from there. They were pretty bad and meds werent working @ all. When she was about 1 she was put on the Ketogenic diet-and evne though it was hard to manage at the beginning-and still is at time-her quality of life has increased drastically!! Before the diet she was like a newborn, not sitting unsupported, not even walking!-Now at 4.5 she's able to walk and almost run! (she also has mitochondrial disorder-low muscle tone)
mnat28 2 years ago
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I do a ketogenic diet for many reasons, here are some things that are real important for ME, in making this diet effective. 1. High level of ketones 2. Restrict carbs to very low levels, less than 20g. 3. Restrict protein levels to body requirements 4. Restrict fluid intake, this will increase ketone concentration. 5. Eat a SLIGHTLY subcaloric diet. 6. I eat a large percentage of calories from fat, about 70%.
I use MCT's, (coconut oil) occasionaly, but that stuff is rough on the gut.
tickyul 2 years ago
I posted earlier about the celiac diet helping me & wanted to update that info, it helps but the smallest cross contamination or hydrolized wheat oil in my conditioner & I am sick for several weeks. So worse myoclonus & now ataxia symptoms increasing weekly. For adults no one discuses the ketogenic diet but I would love to try it but can find so little specific to adults. The doctors are so helpless that it feels like they have given up. I need to find the right one I know but it is so hard.
pamelamadindong 2 years ago
I ran out of room before I got to send my love and reguards to your little one, hope she finds continued improvement and I wish all of your family my sincerest best wishes.
pamelamadindong 2 years ago
Thank you. I hate that you are struggling. It is hard to keep cros contamination from happening. We did a gluten free diet for almost a year. I really think that was what made trying the Ketogenic Diet so easy for us to manage (all except the emotional part)
If you want to attempt the ketogenic diet you definitly need to find a neurologist who is familiar with the diet. If it is not followed carefully and done right there can be serious consequences. Definitly never do it alone.
Denae1977 2 years ago
Thank you, well it just seems like nothing is working for me right now. I want to try the Ketogenic diet but not sure of what all that will entail. I will let you know if I do and if it helps. All my best to you and yours, Pamela
pamelamadindong 2 years ago
Thats wonderful news about your daughter. Heather Riley is doing a little better after a very rough fall/winter. She is taking Felbatol and 3 other anti seizure medications. We hope to be able to reduce some of the medications.
Denae1977 2 years ago
Don't worry! Everything is going to be alright! Keep praying to God for protection! Here is the scripture on Matthew 7:7-8. Keep on asking, Keep on seeking, and keep on knocking! Don't know the verses of Matthew Chapter 7 verses 7-8.
davidjain918 3 years ago
You should get her tested for Celiac commonly associated with Myoclonic seizures. I have them as well. I would get thousands a day. They are a symptom of an autoimmune disorder. Mine are controled now by going on a gluten free diet, completely med free. I only had 2 today, a small flare up, but have gone a few months without any thanks to a strict wheat free diet. Worth looking into, it is s simple blood test. Search Celiac & myclonic, find a celiac specialist in your area & get her tested.
pamelamadindong 3 years ago
She was tested several years ago for celiac and went on a gluten free diet for a very long time ( I think about 18 months) we didn't see any difference. Our geneticist actually gave us lots of info about this. Thank you for sharing!
Denae1977 3 years ago
I am sorry she did not get the relief she needed from this. I am glad you are willing to try anything and keep looking for answers. I wish you all the best! Do not give up hope. Thanks for staying so strong and being there for her. I saw your video after I posted this earlier message, really sweet and moving. Dear child! I feel for oyu and her and your entire family and again hope you find the answers you seek. All my best, Pamela
pamelamadindong 3 years ago
I just wanted to give you a hug! We are currently on an natural treatment. The damage will always be there and so will the fear. God bless you and your beautiful daughter!
Littlebrwneyemomma 3 years ago
Riley is always in my thoughts. It must be heartbreaking to watch her go through all this. I hope you can find peace in knowing what decision to make!
nicolejeansw 3 years ago
thank you guys.
Denae1977 3 years ago
btw, Lisa O. from BT...
andromeda3131 3 years ago
very beautiful video...tears in my eyes...hits so close to home!! :)
andromeda3131 3 years ago
Denae and Riley, what a touching and beautiful video. Riley is so brave and the smile she has is delightful. Best wishes as always and seeya at the forum.
paulcopeland 3 years ago
What forum? Mother to Ethan Ecephalopathy NOS with Epilepsy.
dlblansett 3 years ago