November 1, 2010

Surviving Epilepsy

noah-y

I hate seizures.

Like, I absolutely
hate them.

My firstborn son Noah started having seizures when he was just two years old. That's how old Ivy is. That might be how old your child is. Think about it.

I thought he was being electrocuted. The first time. I just didn't know. I immediately called upstairs for my husband to call 911! My body thought maybe he was choking, or had gotten shocked by an electrical outlet, and in a few moments it would set in that I think he was having a seizure?

I had never seen one before.
I would see many many many many way too many in the months to come.

Not only is it ugly, and scary, but it also tortures your mind. You are now not only mother and protector, but you become detective! What is causing this to happen to my child?


They will run tests. CT scans, EEGs, MRIs, blood draws, blah blah blah.
They will probably not be able to find these tests helpful. So many come back "all clear!" or "normal!" the first time. Not all do, but ours did.

You will learn to be comfortable sharing a tiny hospital bed with your child, wrapped and weaving through the tubes and wires. You will do whatever you need to get to him. You give your sleep, your sanity, your life.

And yet, you can do nothing about the seizures that take over his body at any given moment, even when he was sleeping. I don't curse, you know, but when I would be holding him on my chest while he slept, and could feel his body jerk and collapse in my arms. Thems cussing times in my heart.

Days have new meaning. There is no Monday or Tuesday there is : 3 days since the last seizure.

He will walk around and "look" normal and people will comment "Look how good he's doing!" and you want to claw their face because they didn't see him that morning during a 5-minute-long grand mal.


sad nose

They could never find a cause. Sometimes there will be reasons, like head trauma, vaccine reaction, illness, birth defects, fever, what have you. Other times it will be unexplained- or explained-away that almost every child has a seizure once or twice in their life. What about two hundred times A DAY?


Yes, that was our reality during Christmas of 2003. He had to wear a helmet, specially fitted in the occupational therapy room of a children's hospital. He all of a sudden was disappearing right before our eyes. His body was there, but not his mind. And this body was broken any way. Where was my baby? What happened? What did we do?


After a few seizures they will want them to take medication. Anti-convulsant medication has crazy awful side effects. So, on top of them NOT WORKING and only making him have more seizures (one of their "possible side effects") he suffered from all other sorts of crappy ailments due to medication. And he was only two years old.
Once a perfectly normal child going about his normal little life to now wearing 24/7 a blue helmet with rainbow strap, on pharmaceuticals, and (what it looked like to us) dying.

Doctors remain stumped. It's criminal the lack of funding and research for a disease that affects more people than so many other in-the-spotlight diseases combined. Epilepsy is easy to ignore, I guess. Unless you're the mom.


It's criminal that meds are the first suggestion- I speak from our experience that meds should be the last resort. There should be more research to find ways to pinpoint the cause and then fix it! Not put a band-aid that won't stick on it!

I write with passion, and conviction. I still have hurt feelings. If I could do it all over again?

I would have never vaccinated our child. I would have never filled that first prescription. I would have gone immediately to a chiropractor and looked into diet changes. Meds only made my child worse. The Ketogenic Diet made him better. That's our story.


diet food

He's 9 years old, seizure-free SIX YEARS now. No thanks to meds, no thanks to doctors in our hometown, all thanks to banged-up on my knees flat on my face faith, knowledgeable pediatric epileptologists in Chicago, and the Ketogenic Diet, which, even though it made my son better is still considered a controversial treatment. It is almost always the last resort when it should be considered as a first line of treatment, and always under a licensed Ketogenic Dietitian's care.

Now, I of course can't claim it would work for everyone but GOSH DARN IT everyone should at least be given the option.



You can read the much more structured/less rambling outline of Noah's story here. He weaned off the diet in 2006 and has remained seizure-free since October 30, 2004. He has gained back almost everything he lost- still playing a bit of catch up on some skills but above all, he is Noah. We have him back, and I'm never letting go.




Noah is not the norm- many children and adults suffer from seizures all their life. I am trusting he will never have one again, but even after SIX YEARS the waiting and watching never ends.

Please find more info on what to do when someone has a seizure, know the different types of seizures, and more factual information that explains it way better than I do
here. You can also check out the American Epilepsy Outreach Foundation.

November is 2010's National Epilepsy Awareness Month. I hope you will remember to share our story if ever someone you know has a baby or child suffering from seizures. We are a success story. And we are speaking up.


happy nose


As always, I am glad to answer any questions you might have for me- feel free to email me : stephanie.precourt @ gmail.com.


60 comments:

  1. You are amazing. I so admire how you openly share you life because you know it might help another family.

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  2. Bless you. My Isaac turns two this month, and I can't imagine.

    Peace and continued health to your family!

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  3. Wow, tears. Reading your success story makes my heart happy, first as a mama, and also as a dietitian. The ketogenic diet has definitely been overlooked in the treatment of epilepsy (although I'm not at all surprised in this era of Big Pharma) but it's AWESOME to hear stories like yours where it was the key treatment. Thank you for sharing your experience!

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  4. Reading this just makes me want to cry. That's a terrible thing to have to go through.

    So glad that yours is a success story. And I hope that you talking about it helps there be more.

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  5. Love you.

    This?

    "He will walk around and "look" normal and people will comment "Look how good he's doing!" and you want to claw their face because they didn't see him that morning..."

    I know this.

    Always in prayer for Noah too...
    <3

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  6. I'm so glad he is well. My daughter also is doing well....not off meds yet, but maybe one of these days....
    Mary

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  7. Your honesty in the face of potential controversy is so admirable. And the love for your kids is so unflinching. We all can learn so much from you.

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  8. My son turned two in September, and I don't know what I'd do if he had a seizure. Thank you for educating me more on this, and what a powerful story! Glad to hear that Noah is doing well.

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  9. What a powerful story!

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  10. And I'm sure your prayers and faith that God would heal him played a huge role. I can only imagine how many times you prayed and cried out to God.

    I can say this honestly, and from the heart, I'm so glad that he has been seizure free for so long! And yet, I'm so sorry he and you went through so much.

    My love to you and that beautiful, smart little boy!

    Nell

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  11. I am a mom with a hild on the Keto Diet as well and it has SAVED MY SONS LIFE!!!! Thank you so much for sharing this story about your life, I feel many of the same things stated here. I will copy this article and put it in my son's baby book and when he is 20 or 30 or 40 I will hand him everything, thanking God the entire way!!!!

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  12. Much love and strength to you, Steph. He is and has always been beautiful. A mama knows what's best. <3

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  13. I love to read stories like this, partly because it has a (so far) happy ending and partly to know we are not alone. Our daughter started having seizures at age 6. She is on meds, which is okay by us, because they have done her a world of good in areas other than the seizures, as well as control the seizures. I agree meds are not the right fit for everyone, and I consider ourselves so blessed to have found a good med for her, plus we love her neurologist. It does bother me that epilepsy is not a popular affliction to fundraise and do research for, but I know God is holding our daughter in His hands.

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  14. thanks Steph for writing this post! Make my heart heavy just thinking of what you had to go trough. Praise God for His healing and praying that this is all in ht past and would never come back!

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  15. Jade just passed her 2-year anniversary on keto. We're looking at another two years, at least. There are times when it's hard -- really hard -- but Jade has now been completely seizure-free for five months, and 99% seizure-free for over a year. For Jade, keto has definitely been the miracle diet.

    I'm with you on all the feelings. I'm sorry to say, there were also days when I couldn't summon an ounce of sympathy for my friends' "normal" problems with their kids. We were the ones that people met and said, "Wow, I'm so lucky."

    Michael did a great post about Jade's 2-year diet anniversary here and I just posted about Jade's latest visit with her neuro and developmental assessments here.

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  16. Thank you so much for sharing... I love his story - for the strength you both exhibit and the love and the support for others :)

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  17. thanks for sharing his story, your story. it really is an inspiring story for anyone.

    thank you. and i pray for continous good health!

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  18. Just as beautiful as your children is your way with words. May Noah remain seizure free forever.

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  19. My heart aches for you and what you had to go through.

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  20. Thank you so much for posting this. My 3.5 year old daughter was diagnosed with Epilepsy in September, the doctors are guessing that she has been having Seizures her entire life. We're in the process of medication after medication, test after test. Thank you so much for bringing awareness to this disease.

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  21. "We are a success story. And we are speaking up."

    Yes, yes you are. With passion and eloquence. GOOD FOR YOU! As Mamas we have to do what is right, for our kids for our family. The more information and options out there - the better. When we don't have choices, or don't know we have choices, we are powerless.

    I hope Noah stays seizure free always.

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  22. Tears here. My older sister started having seizures several years ago when she was in her thirties. As far as we know, unexplained. She hasn't had one in awhile, but how very very scary they are.

    Hugs to you

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  23. I am so glad the diet worked for Noah. My sister has had epilepsy for about 10 years now and managed to remain seizure free through this last pregnancy. For her, there IS a concoction of medications that works, but it's not the case for everyone. Diseases of the brain are so misunderstood and vastly underfunded.

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  24. Thank you for sharing this. I completely agree, that meds shouldn't always be the first answer. But unfortunately doctors push them, and even worse, patients often push for them. I'm lucky enough to have found a pediatritian/family doc that doesn't use meds as the first answer to problems. He believes that for many things, our Lord has created the human body to WORK. And if there is a problem, then oftentimes there is an environmental/behavioral/other logical reason for this problem to occour. Something that can be changed, not medicated.

    Also, as a side note, I wouldn't trust the hospital/doctors in your hometown with my children's health for anything. They nearly killed my father-in-law twice. He now drives to Chicago for all major medical issues, as long as he can help it.

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  25. Thanks for the reminder about November - most of the time, I am able to put epilepsy out of my thoughts. Dash's were not so crazy scary - but scary enough. We have been lucky enough to keep him med free, but his first was at age 2, and I remember how horrible that was. His 2nd was years later - and here we are, years removed from that one, and will there be another? Maybe...I hate seizure. But, I am so glad that you found something that worked for you son.

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  26. Thanks for sharing your {and Noah's} story. I'm sure you will {and have} help{ed} so many by speaking openly about this. It's so great that he is doing so well!

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  27. my son was 2 when he started having seizures. The first treatment..MEDS!!! he was on 6 of them at one time STILL having multiple seizures a day..at the end of this month it will be a year since he was diagnosed with epilepsy..with no known cause..grrrr...we just started the ketogenic diet 3 months ago and have seen some improvement, but are still in the fine tuning stages..This is my hope to get my little boy seizure free and to see that your son has been seizure free for 6 years gives me that much more faith that this WILL work for him!!

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  28. Prayers that he continues to stay seizure free.
    I look at all of my children and could not imagine what I would do if one of them started seizing. I doubt I am strong enough to handle it if something ever happened to one of them.
    {{{hugs}}} to you and your babies.

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  29. I already commented, but I wanted to let you know I shared your story on my blog and put in my two cents about the ketogenic diet:
    http://thechoulife.com/2010/11/01/sharing-a-story/

    Blessings to your sweet family~

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  30. Wow. I hope that your story continues to be a success and that your beautiful son stays seizure free. Years ago when I lived in CA with my cousin who suffered from seizures due to a brain tumor that she had removed some years earlier. It was never easy to watch but I got very good at helping her through the grand mals. Last week I saw my own baby have a seizure in her carseat and thankfully for us after a ton of tests they said it was a febrile seizure which I know by no means compares to epilepsy but I can relate to that first time you went through it. You are an inspiration Steph, bless your family.

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  31. This is just beautiful Stephanie. You give so many hope. Your sweet Noah is a rock star and that is because he has you as a Mama.

    Keep being that Mama Bear and talking, talking, talking. We are all listening.

    xo

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  32. i love noah. and i'm so proud of you. i know our stories are all perfectly written, but i do wish so much that we had been friends then.
    so glad you wrote this. tears, tears.
    praising God for noah's 6 years seizure free!

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  33. I am in tears. My son is 2 years old and I can not imagine watching him go through seizures or losing any skills. I also can not imagine how you and your husband must have felt, not knowing what caused this or how to fix it. I am so thankful that you are so open and willing to share the story. I am also so happy that he is cured. What a wonderful blessing.

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  34. I'm glad you found help for Noah, and I'm glad you're sharing your story. I know it will help someone who needs it.

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  35. For some reason I feel the need to add that the photo above in the Thomas PJs- Carter and Noah in the helmet- that was taken at our in-law's. We moved in with them while we evacuated our home in case there was something in our house causing Noah's seizures. We would have moved to another country. We would have done anything.

    And we did.

    Steph

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  36. I cannot even imagine how hard that must've been to go through, and how it must still affect you today. Stay strong.

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  37. Steph, I am at a loss for words. You and Noah are so beautiful. You have the strength only a few people in this world are blessed with. Thank God Noah is doing so well. I am sorry from the bottom of my heart that you, your family, and your beautiful son had to experience this pain. I will pray for you.

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  38. I've started and deleted ten comments by now, I think. A month ago, I would've commented right away and said that I can't imagine how scared you were and how strong you are. And now, I still can't imagine because you went through so much, but I understand so much more than I thought I would. Holding your child, while yelling for your husband to call 911 and wondering if they'll make it in time and the tests and tests and tests and all of that.
    Your success, your NOAH gives us so much hope, and I know it will for so many others.

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  39. I am so thankful that you continue to talk about Noah and advocate and educate in this area - you are amazingly courageous and strong. I had early childhood seizures as a toddler/young child (still unexplained, as many of these cases are) and my mother still can't even talk about it. I know it's hard to go back to those scary days, but I'm glad that you're willing to do it anyway, and in such a positive, redeeming way, for Noah, for yourself and for so many others. Thank you!

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  40. I knew your story with Noah's seizures; but that post was written with such passion, I felt the powerful emotions that must've ripped through every fiber of your being while dealing with that nightmare. I'm so sorry you and your family had to suffer, and I'm so in awe of you for how you dealt with it. I would've done the SAME THING. I've learned that I am the only true advocate for my child's health and well-being, and I am the fighter on the front lines. Thank you, Steph, for writing such a powerful piece on a disease that does not get the funding and attention it deserves.

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  41. What an amazing story, and so amazing how that diet worked for your sweet Noah. Praise God! I will always remember this story and will surely share it if the situation ever lends itself. Happy November One Steph!

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  42. thank you for continuing to tell your story. It has made me think twice about what I give my kids...and a little regret about vaccines. Wishing I had done more research. Thanks for reminding me that I do not have to do what the drs say.

    This is rambling I know but although I have never experienced this with my own, your story, Noah's story has touched me in so many ways.

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  43. So glad you're sharing your story, Steph. It is important to speak our experiences, our beliefs, our truths.

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  44. Oh my gosh!!! Crazy tears! My heart is in my throat. What a beautiful and sad and emotional post.... and I could read your passion and emotions for your family and sick little man and hatred for that horrible sickness. God is good and I am so thrilled that you have an awesome testimony! Way to go Mama for not listening to the docs but going with your gut! :) Gosh! I went back to re read the ending to make sure I commented on everything...and more tears. Bless your heart lady. You have some Mama strength to endure the constant wondering, watching and waiting....

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  45. Thank you for sharing this. And congratulations on several years without seizures. I have a close friend with epilepsy.

    It's so great that you have been able to find ways to help your boy. I have had my share of frustrations with doctors since becoming a parent, because it seems most of them only want to give you a drug rather than help you get to the root of the problem.

    Blessings....

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  46. I believe your son is alive and WELL today because of your diligence as a mother Steph. Amazing. I'm SO happy to know that your story turned out the way it did. xo

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  47. What an incredible testimony...

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  48. Seizures are scary! I can't imagine how yours were with so many. My little experience was with my 11.5 month old daughter (my first child) and she was feeling a little sick and down under. She didnt feel too hot. Well- all of a sudden she went limp in my arms and then shaking like crazy. I thought she was dying and I was screaming for my husband. We raced to the hospital (it's closer than the paramedics are) and I was still barefoot. We found out her temperature had spiked to 105.9 really really fast. Yikes. Scary stuff. So my suggestion for all new moms is to buy one of those instant thermometers and keep children's motrin and children's tylenol ( or infants) always on hand. I never knew such a thing could happen. I didn't have an instant thermometer before but now when my kids feel warm they get checked all the time.

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  49. Steph,
    What a heart-wrenching post.
    I know what it's like to hold your child that's covered in wires and to have a medical team gathered around them, not knowing what's going on. I know what it's like to have to be your child's advocate over and over, especially when you feel like no one is listening. I know that we all say "If I could go back in time, I would do _____ differently" but know that you did the best that you could at the time and that God is still sovereign. This blog post is a testament to God's goodness and faithfullness to you and your family and it's important that you share it with the world. I'm so glad that he's doing well. What a gift it is to be able to sigh in relief! xo

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  50. Steph,

    I know how hard this must have been for you to write. I'm reading it with tears, and I'm sure it was written with tears. Your passion is beautiful, and by sharing your story you are helping so many others. Thank you for your courage. You are an amazing mother for fighting for him, not giving up, doing whatever it takes- he is such a blessed little boy to have you guys as parents. I'm so happy he is better.

    Even when medicine works- it should be used while they figure out what the cause is. Medication is not the answer- even if it works- it is just a band aid, and often only alternative medicine physicians are the ones that care to look at the causes.

    xo

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  51. I could not have written this better myself...I am crying, I am thankful, I have goosebumps....I want to post this whereever I can...send it to government officials, put it on a billboard!
    From:
    Christina,
    mommy to Leo, age 4 1/2
    Ketokid 2 1/2 years

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  52. I sent this post to two friends who are currently living the nightmare with their children. We have chosen not to vaccinate, and feel the pressure from family, doctors, co workers and friends to change our minds. Reading your post reaffirms our choice, so I thank you, for wearing your babies, and your heart on your sleeve. mwah!!!

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  53. I love when you write these honest posts, but particularly when you write about Noah. I join him as one of the 70% of epileptics who never know the cause for their seizures. He and I are still very different--my seizures started at 8, medications worked (for the most part; I had to try a lot of them!), and I technically have status epilepticus, where I seized for hours straight and could have died--but the turmoil resonates. My parents showed me the pages of tests that happened to me in the weeks I was in the hospital with each seizure attack, and I just CANNOT understand how the brain can fail but all those tests say "normal." At 24, I've been seizure-free for about 6 years; but I can't let go of that paranoia that they could start again or I could pass this onto my own kids.

    Though the who/what/when/why details are all blurry for seizures, you do right to thank God for his healing. He knows you're not blaming, but only trying to grapple with the sometimes shaky reality that is being human. Keep your mind churning and your heart burning for truth. To Noah's benefit, so much epilepsy research shows that seizures usually last through a certain age range: baby to early age, early age to puberty, puberty to adulthood, etc. It is my prayer for him that God has brought him out of that "phase" and into a lifetime of seizure-free living.

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  54. oh boy. this post brings so many emotions to my heart. we talked several months ago on the phone about my son max who technically has epilepsy. i'm so happy to say that he hasn't had a seizure since april 5th. but i live in fear every day that it will happen again. in fact, i dreamt last night that he had a seizure. the only thing the neurologist offered to do was to put him on meds. we refused. instead we took gluten and corn out of his diet and i believe that is the cause (food allergies). oh the fear. it is so hard. it is so hard to have faith in God and trust in Him that it will be okay. i am trying to replace my fear with faith but it is oh so hard. and nobody who hasn't experienced seizures understands. i feel like my fears get pushed under the rug because people look at him and think how wonderful he's doing. and he is doing wonderfully! but they didn't see him seizing for five full minutes...gone...not there. max was 15 months for his first two seizures and almost 2 with his third. thankfully he has not had more than that...i cannot even begin to imagine where you've been and how terrible it was. thank you for writing about this. as hard as it is to let these feelings of mine surface, it is so comforting to have someone who knows exactly how i feel. thank you, thank you. xoxo

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  55. I never knew your son had epilepsy. I had also never heard of this diet. I had a difficult time maintaining my own GD diet, you are one amazing mother!

    I can't imagine what it must be like to see your own child suffer a grand mal seizure, but I certainly understand living with epilepsy. My step father suddenly began having grand mal seizures when I was a child. It was scary stuff. He is in a very small percentage of epileptics who have every type of seizure. He can have hundreds a day. In his case, a head injury was the cause.

    I hope he continues to be seizure free. That is truly amazing.

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  56. i cant believe ive never read this post!! it is amazing and such a testimony!!

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  57. My 13 year old dog just started having seizures, every two weeks now. he will have one and then another one the following day, followed by hours of disorientation. I can't begin to compare what we are going thru to you seeing your child have seizures, but I was struck by your comments as we now live by how many days he is seizure free, how many nights he is able to sleep thru the night, how we anticipate every movement, his anxiety as possible warnings of another seizure, is it safe to leave him alone, why are'nt the drugs working,etc. I am so glad you had success with the diet, I am going to ask my vet about it tomorrow, thank you for sharing your story and I wish you continued success and happiness at being able to have Noah seizure free.

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  58. again - even though keto isn't what helped us (we found help before that step) i wholeheartedly agree that it should be a first line treatment not a last resort. WELL SAID.

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