With the Kids

Living With a Special Needs Child

I’m so happy to introduce you all to my sister-in-law who’s my guest today. Cathy’s here sharing some information about her child with special needs. She writes about her son’s condition at Keto Kid, sharing tips and support for other similar families.

We have three great boys! Our youngest, Noah, is 6 years old.  He loves super heroes, school, karate, baseball, tubing behind the water ski boat and jumping on the trampoline. Noah is also epileptic.

Keto Diet Family
Noah’s first seizure occurred when he was 6 months old. During the next 4 years, he averaged about 150 tonic clonic seizures (grand-mal) per year. His seizures lasted anywhere from 10 minutes up to three hours.  Noah tried and failed four anti-epileptic drugs and endured many nights in the hospital.

In 2006, Noah’s epilepsy was diagnosed as GEFS+ (Generalized Epilepsy Febrile Seizures Plus). This is an uncommon genetic mutation and is on the spectrum of sodium channel epilepsies. The Idea League Family Network was formed by families, like ours, that have children suffering from a sodium channel epilepsy. Its purpose is to help families, educate the public and ultimately find a cure. To find out more about sodium channel epilepsies please visit the Idea League.

Keto Kid Diet

Noah’s life changed in January of 2007 when we started him on the Ketogenic Diet as a treatment for epilepsy.  It is neither a wholistic nor a “natural” form of treatment and has its own dangers. Keto Kids are carefully monitored by Keto Dietitians and their Neurologist while on the Diet. It involves a restricted caloric intake, high fat and protein, and low carbohydrates. Each meal is weighed to reach a certain ratio of fats & proteins to carbs as well as meeting the child’s specific caloric intake. It is as successful in treating epilepsy, if not more so, than the anti-epileptic drugs currently available. One-third of Keto Kids become seizure free. Another third have better than 50% improvement. Noah has had only 7 seizures since he began the diet. If you would like to know more about the Ketogenic Diet, please drop by my blog, Keto Kid.
Keto ChildIf anyone is venturing through epilepsy themselves or with their child, I want to say, we love you and pray for you each night. May you find a moment of peace in your journey as well as many opportunities to grow and learn. We hope that you will be able to find help through the Diet, or anti-epileptic meds, or through whatever source you seek. It is an incredibly heavy cross to bear but we know you can do it!

Special needs children are amazing and we hope that everyone will be a little kinder, a little braver and encourage your children to befriend these epileptic children. Although they are different, they have a special friendship to offer and so do their families.

Thanks, Cathy. I know first hand what you have gone through parenting Noah and you are an amazing mother. It’s great to know that you’re sharing what you’ve learned these past 6 years, now helping and supporting others.


  1. Thankyou for sharing your stories. There should be sites and happy stories like this. My daughter been having uncontrol seizures for nearly 2 yrs now are have been on 6 different anticonvulsion medication but she still have seizures daily. Been suggested to try the so called “miracle diet” – Ketogenic diet. Read alots of amazing outcome so hope our daughter will gain alot from this diet. Won’t be easy though.

  2. I just typed out a comment here but then my phone died so excuse me if it posts twice!

    My Noah was on the ketogenic diet for 2.5 years and it was our miracle. He is 8 now and has been seizure-free almost 5 years now. I can hardly believe it. He’s been off the diet almost 3 years and is doing great.

    I still have the play-doh birthday cake we made for him, saved in a Tupperware container- as a matter of fact I was just looking at it yesterday thinking about how far we’ve come. He blew out his candle in that cake and then we served keto Popsicles and his special cream as ice cream with flavorings and food coloring.

    He is doing wonderfully- I hope the same for your Noah!

    Stephanie Precourt

  3. Thank you for sharing the information about your son’s special diet. I was unaware that such a thing existed. My eight year old son takes Trileptol to control his seizures and we were told that he would have to be medicated for the rest of his life. I’m definitely going to read your blog and research this further.

  4. Cathy, this is truly an inspirational story to all parents who have a children with epilepsy! I was diagnosed with epilepsy at 15 and having supportive, proactive parents made such a difference in the course of my treatments. I only had 3 seizures in ten years. I am a 31 year old mother to 2 healthy girls and feel so blessed. Stay strong…what you are doing for Noah is wonderful. Thank you for sharing.

  5. Hi Cathy! I had no idea you two were related — I’ve been following both your blogs for quite a while. Makes and Takes is such a great source of projects for my 3.5 year old keto kid.

    Blessings to you both.

  6. My niece is 30 and has two children she deals with a seizure
    disorder and working too. Your little one is in my thoughts and prayers.

  7. Wow! Thank you Cath for sharing your experience. I am so amazed with your family, and so blessed to have you in my life experience. You are touching many people. I am amazed by the comments, to see how many you have touch here and probably more who have not commented. Thanks Marie and Cathy!!!! Love you both!!!

  8. What lovely comments from everyone. Thanks to all of you for sharing your thoughts. I’m so glad Cathy’s been able to share this post, reaching out to so many who are in similar situations.

  9. Thanks for sharing your sister’s story with us. I have a special needs daughter as well and she has Epilepsy caused from a stroke she suffered during utero. In November of ’07 she had a hemispherectomy which was the removal of her left side of the brain. Her seizures had become so severe we were unable to control them. Although the surgery helped her seizures have not completely stopped.

    I plan to visit your sister’s blog next. I love finding new bloggers.

  10. Awesome post Marie (Cathy).

    I’m such a huge believe in the power of food as a healing agent for health (although i don’t know how much good those peanut butter chocolate chip cupcakes are really doing for my overall wellness.)

    What a great story and I’m certain there are many out there who are finding comfort and help from your story.

    Awesome! (And Cathy, tell your husband hello… We used to be neighbors to the Holts.)


  11. Isn’t it amazing the diversity in this world? I’m so grateful for people that are willing to share and willing to be vulnerable in order to help us all understand a little bit more what life is about. Thanks for all of your supportive comments. And thanks to my sweet sister-in-law, Marie for getting the word out! She is an amazing woman and terrific sister!

  12. Thanks for sharing your story! I’m 26 years old and had my first seizure when I was 12. I’ve now been diagnosed with Juvenile Myoclonic Epilepsy. I’ve been taking Tegretol XR on and off for about 12 years now, and have happily been seizure free for 6 years. I too was scared of the word “epilepsy.” I didn’t want to be labeled.

    I have a 4 month old now, my husband and I decided to keep my on my medication through the pregnancy and we have a healthy happy son! But I have a fear that I’ve passed this on to my son. (My brother also has epilepsy so I worry that our genetic risk is higher.) So it’s great to know about networks of parents out there like you in case I do ever face epilepsy with my son.

    I admire your strength, and know God is by your side fighting for your son! He looks like such a happy guy!

  13. Thank you so much for this post. I feel extremely blessed that my daughter has been able to not have seizures through medication- and I CAN imagine what you’ve been through as a mother of a child with epilepsy. I am still at the stage where we don’t know if she’ll grow out of it as she gets older and I’m still scared of the word “epilepsy,” I don’t say it out loud when talking about my daughter, I’m not there yet. Thank you for your strength and prayers, they are returned in our prayers for you and others going through medical issues with their children.

  14. Wow! As a former Special Education teacher, I love kids with disabilities. 150 clonic-tonic seizures a year! That is scary. The Keto diet sounds great! I will have to remember that if I ever have a student or friend who has a child with seizures. Thanks for the info and God bless your family and son!

  15. I also the mother of a special needs child. My little girl has an incredibly rare genetic disorder and for all the unknowns, she is only a little delayed. She can’t talk well, but is very brilliant. Thank you so much for sharing and letting the world know more about special children. My little one brings me and our family great joy!

  16. Thank you for sharing this. So personal…I have tears in my eyes as I consider your journey.

    I know just a bit of the fear you may have. My 2 1/2 yo Meghan has had two febrile seizures…so scary, yet ours only lasted a few minutes…the first was about 10, the second less. She had these while having a dangerous heart condition called SVT…she has outgrown that, but has a new special need…She has a speech disorder called apraxia…it’s not outgrown, but she is overcoming it. She now uses some two word sentences and her vocab is increasing, even if it’s not all understandable to us or others.

    We all seem to have our own journey. And God never gives us more than we can handle. Through the tears we may question, but I am certain that He knows what He is doing.

    Thank you for sharing.

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