Saturday, May 20, 2006

The full story


On Thanksgiving Day 2003, we were shaken from our everyday normal life. Noah, our normal, healthy 2-year-old son was suddenly having seizures that no one could explain. From the very beginning we felt it was an attack from the enemy. We searched our hearts and our home to see if there was any area of sin in our lives that could have given room for the enemy to get inside. At first we might have looked crazy as we were throwing out things from the house that we thought might or might not be “it”, but we didn’t care. These things were material things and they didn’t matter to us as long as we felt we were acting out of obedience to God. As we searched our hearts and submitted ourselves wholly to Him, we saw more doors open to our answer each step of the way.

We knew that Noah’s diagnosis of epilepsy was not in God’s plan. In the natural, we were literally watching our beautiful little boy disappear from life. By January 2004 Noah was having more than 200 seizures a day. These attacks were vicious and required him to wear a helmet for protection against being thrown to the floor almost constantly. At some times he could not talk or walk on his own. He was in a daze and often-times unresponsive. Our hearts had never been so close to being completely broken, but we knew there is Hope.

I would sing these words over and over to Noah: “I sing because I’m happy. I sing because I am free! His eye is on the sparrow, and I know He watches me.”

We took huge steps of faith not to succumb to the desperation that wanted to take over. Psalm 138:8 says The Lord will perfect that which concerns me (to us we claimed our Noah); Your mercy, O Lord, endures forever; Do not forsake the works of Your hands. Joshua 1:5: No man shall be able to stand before you all the days of your life. As I was with Moses, so I will be with you. I will not leave you nor forsake you. And Philippians 1:6- being confident of this very thing, that He who has begun a good work in Noah will complete it until the day of Jesus Christ.

I had a dream one night and in it The Lord spoke and said- “I know how this ends.” As hard as it was to watch Noah this way, we were rejoicing because we knew that the Lord has an ending to this better than we could imagine. Not only did we fight opposition with Noah’s seizures, but also our own doctors could not provide help for us either. Medication with horrible side effects was being increased all the time, and a cure was never discussed.

We were to just “accept” Noah for how he was and learn to live with it. Many parents with children suffering with the same disease are told their children will most likely end up in an institution. We devoted every moment possible to prayer, scriptures, and researching in books and the Internet. We knew that the medication was doing more harm to Noah than any good. We could not bear to see our child wear that helmet one more day. Our family continued to pray for the answer to be revealed to us. We knew that the enemy was arrested and “found out”- our answer was about to be released.

Through research, we learned about the Ketogenic Diet- a successful alternative cure to seizures. This diet was nothing new- it has been around since biblical times. Matthew 17:15-21 tells of a man that brings his son to Jesus: “Lord, have mercy on my son," he said. "He has seizures and is suffering greatly. He often falls into the fire or into the water. I brought him to your disciples, but they could not heal him.” Jesus later tells his disciples “this kind” (meaning seizures) “does not go out except by prayer and fasting.” In biblical times, a person would fast 20 days and their seizures would be cured. The Ketogenic Diet simulates fasting. It is a temporary diet and it requires the body to burn fat instead of glucose for energy. When the fat is burned, ketones are produced in the brain- and the ketones control the seizures. This is a natural method designed by God.

Our own Pastor told us at the very beginning that it could be something as simple as being diet related. We never forgot that.

Our doctors never told us of this diet as a treatment option. We asked them about it and they immediately showed resistance and had no faith that it would work. Their answer was to try another medication. We felt this was an opposition from the enemy. After a lot of prayer, we decided to wean Noah from his medication on our own and found a doctor at Children’s Memorial Hospital in Chicago that supported the diet and had faith that Noah would be well again. This doctor had a normal waiting list of up to 3 months. We saw the Lord’s divine intervention: the doctor saw Noah on her day off just a few days after we called in for the appointment. Noah was scheduled to start the diet almost immediately.

We believe the Lord led us to learn about the diet, and he opened up the doors for Noah to see the proper physician that could help us along the way. There is no other explanation. The Ketogenic Diet is normally used as a “last resort” treatment option. To start the diet the patient usually has to fail several medications (often 10!) first, which then means sometimes years before the diet is considered. We have since met several families of children with the same diagnosis as Noah. Many went through years of 10 unsuccessful medications, surgeries, and procedures before considering the diet. Noah only went through 3 months of seizures before starting the diet. Although 3 months seemed like forever to us, Praise God we didn’t have to wait 1 or 2 years!

Noah’s Ketogenic Diet initiation took place at Children’s Memorial Hospital in Chicago. Normally the diet requires at least a 5-day admission. He was under constant medical supervision and we were warned of possible dehydration and severe vomiting and sickness during the process. Noah never had any of these problems.

He went from having so many seizures that we’d lose count to having only one seizure per day in the hospital. He was so successful with the diet that we were able to go home early on only the 4th day! Noah was seizure-free by the time we left the hospital. The Ketogenic Diet is only temporary- many children remain on the diet for at least 2 seizure-free years.

Upon starting the diet, Noah’s development was instantly back to normal- back to how he was before he started having seizures. Actually, he is BETTER than before!! Smarter than we had ever seen him- talking so much and so clearly- it is amazing! Many children with seizures like him end up requiring occupational and speech therapy, among other therapies to help them regain what they had lost through the epilepsy. Noah shows no signs at all of needing any therapy.

A verse held close to our hearts through all of this, in the Message Bible, is Proverbs 10:25- “When the storm is over there’s nothing left of the wicked; good people, firm on their rock foundation aren’t even fazed.”

Even in the hardest times, there was NO way we were giving in to this situation and giving the devil credit for this. As hard as he was trying to make it for us, we were going to make it harder for him! Our lives have changed, but only for the better. God truly has turned what the enemy meant for evil into good. We stepped out more in faith than ever before and we continue to see miracles happen everyday. We are wiser, better listeners to the Holy Spirit, and are now much faster to respond obediently. Not to mention that Noah is overall healthier and smarter than he was before! We have an awesome testimony to tell- we “beat the odds” the doctors gave us, and God has already started to use us to encourage others in similar situations.

The Lord has shown us personally that even though the storm has seemed to pass, we still need to keep standing on our firm foundation and increase our prayer and devotion time even more than before. Now is not the time to just sit back and relax even though the “tough times” have passed. We are stronger now, and must keep up the strength training! We should not wait for the desperate times to come and then decide to start listening and obeying. We also can’t just expect it all to be handed to us- it just won’t work best that way. There is a reason the Lord gave us a book of instructions!


We have not only seen Noah’s healing, but also big and little things have come to pass that we have believed for as we have been more obedient to Him. The blessings keep pouring in. We have been a big support to other families going through our same situation and have helped them get proper medical attention and also started on the Ketogenic Diet. These are also people that have become great friends, even though some of them we have still never met.

Noah has had one EEG since starting the diet. An EEG records the seizure activity in the brain and is what was used to diagnose Noah’s seizures in the beginning. The doctor told us that the results were not only good, but normal. Normal- meaning like a person that doesn’t have epilepsy!!


Noah did have one seizure in October 2004 from an ear infection. We do have to be extra careful to avoid exposure to other illnesses so that Noah’s body can be strong and continue to fight the seizures. Since the infection, we have seen no other seizures and no signs that any more will return, for over 1 ½ years now. His doctors believe that 1 seizure was an isolated incident and will not tarnish his success with seizure-freedom. Noah will continue the Ketogenic Diet through October, when he will be 2 years seizure-free. We are believing we can start weaning the diet around November 2006.

*Updated to add: Noah was able to come off the diet just before starting Kindergarten in August 2006! He continues to be healthy and seizure-free!!!

We never once doubted that God could heal Noah instantly and miraculously. We do know from His word that healing can be a process, and we followed His Word to see Noah’s healing manifested. God is good. He is our Teacher, our Healer, and our Refuge. In Him, we are safe and always have the victory!

37 comments:

Shannon said...

That is a remarkable story--thank you for sharing it!

Glass Half Full said...

I can remember having your family over and witnessing Noah dropping. I can't believe it was so long ago! God has been with you throughout this ordeal and will continue to give you guidance and direction...

redsgrl said...

Amazing testimony! God is so good!

Minnie said...

A friend of mine sent this link to me and boy was it ever a blessing! I was recently diagnosed with Epilepsy and have been fighting a huge battle with medications, loss of freedom, attacks from Satan, etc.. You will never know what an encouragement this was to me! Thank you so much for sharing!! I will certainly be talking with my doctor about this diet.

Wendy said...

This is such a great testimony of your faith and God's love and protection. It is awesome that you didn't just do what the doctors said, which it can be so easy to think they have all the answers sometimes.

Christy said...

Thank you for leaving a comment on my blog. I am curious how you ran across it, what linked you there. I am pretty new to this and find that interesting.

What a wonderful story of your son Noah. I see you being able to use what God has done in your life to minister to others.

Chappyswife said...

What you have been through. Wow. I have never heard of this or the diet. I am so thankful that your son is better. You are so right about how we are not to let our guard down, but to stay ready and prepared. Thank you.

dcrmom said...

Wow, what an amazing story. I can't imagine going through what you've been through.

oh amanda said...

Stephanie! What a wonderful story. There's so many things I want to comment about, but it all boils down to one thing: God is so good! We have a similar story about clinging to God's Word for the life of our baby. Thank you for sharing your story and giving God all the glory. I really enjoyed reading about your faith and your family! Thanks!

Beck said...

My son had one seizure and that was enough to scare me for the rest of my life. I can't even begin to imagine what you went through, and how grateful you must be to be safely at the other side now.

jana said...

What an awesome testimony of God's healing and faithfulness! Thanks for sharing this about your journey.

amy said...

stephanie, i just want to hug you. i can only imagine how this affected you. my hailey had four seizures last year at 6 months old, it will be the one year anniversary tomorrow, actually. however, hers was mostly likely related to her severe diarrhea. anyway, i thought i would lose my mind. i thought i had done something to deserve what was happening to her. i was afraid that i was being punished.
like i said, i can only imagine what you went through with noah. my heart goes out to you and i'm so happy to hear that he's doing well. it is truly a blessing.

Melissa said...

Thanks for sharing such a personal story that is such a testimony of God's goodness. I am happy that he has blessed you and your family with a new healthy son!
Melissa

kari wike said...

Wow, what an amazing story. I got tears in my eyes. Thanks for sharing your testimony of God's faithfulness. So cool. So cool.

amy said...

What an amazing story! Thanks for sharing it! I'm sure God is using it for His glory in more ways than you know. Being faithful to God and His word sure pay off! :)

MorningSong said...

What a miracle!! Praise God!!!! I cannot imagine the journey you were on, or that others are currently facing. I cannot imagine watching my child suffer. Thank God he gave you the answer so quickly.

I do not have a story that would be equivalent but I know God provided a health secret to us as well. My daughter was fighting ear infections and it came to the point where she took 3 sets of anti-biotics and on starting the 3rd dose she sounded as bad as day one. (She had a super stuffy nose and double ear infections.) She was also prone to any and every virus that came along. If she caught it, she had it for 10 full days. Other kids would recover in a few days and she was in awful shape for the entire 10 days.

I prayed for God to give me wisdom. In addition, my son was weeks old and was having colic fits. I was past fatigue. Anyway, I found info on probiotics and was scared to try them. God brought me two confirmations, one being a medical doctor and we started both kids on the probiotic immediately! Since then, my kids have been well (within 3 days their symptoms were gone). No viruses, no infections, completely WELL! We use a specific one that is superb. Other friends of mine have tried cheaper versions and still find they fight infections and viruses. The one we use is LifeStart by natren. WWWdotNatrendotcom Anyway, if your son needs his immune system to be supported you may want to check them out. Their website is super informative and if you have questions concerning a specific medical issue they are very helpful in helping you choose a way to boost their immune system as pertains to their medical issue. Anyway, you have much to be thankful for! Thank you for sharing!

MonkeyKisses - Liz said...

Wow.. I have to say Praise God that you guys were able to stay strong and find that diet... That is an incredible story and I pray that Noah stays seizure free and leads a normal life. You are wonderful parents for pushing to find a better way for your son!

Melanie said...

I am moved to tears and am praising the Lord for His care and mercy over litte Noah. Thank you so much for sharing and giving testimony to the Lord's power, care, love, strength and protection over your family.

I am a mother of two little girls and long to have a little boy one day. Noah is the name we picked out for our little boy. As I often think about this name, please know that I will remember your little Noah in my prayers.

Tammy and Parker said...

I am humbled by your faith and testimony. Your desire to submit yourselves wholly to Him is something I strive to do each and everyday. And I will say that some days are much harder than others.

While Parker doesn't deal with seizures, he does deal with so many other health issues. And I can relate to so much of your story.

Thank you for sharing it.

Shawnda said...

WOW! Somebody sent me the link to this story! PRAISE THE LORD!!!! AMAZING! Thanks for sharing!!!

The Mommy said...

Thank you for writing about this! I don't believe it was an accident that I found your story. My older brother (26 years old) has had unexplainable seizures all his life. They have tried medication after medication and have even implanted a pacemaker-type device in his chest that has to be activated with a magnet when he is having a seizure. I am sending my mom a link to your story. I'm curious as to whether she's ever heard of this diet in the 26 years she has dealt with doctors concerning my brother's condition!

Raising Joey said...

Wow, what a remarkable story! Thank you for sharing it with us!

Wendy said...

I am new to your blog via Elizabeth from "Pointless blabberings". Thank you so much for sharing this...so amazing!

AnnaLiza said...

awesome!

to God be the Glory great things He has [and is] doing!

i was wondering if, after all, God threw this at you because of something wrong you did...

Adventures In Babywearing said...

I am not sure I understand your comment. If you are asking if I think that God did this to Noah because of something I did, I do not believe that at all. Just originally when we were searching for answers and wanting to get Noah healed, we were willing to do anything and everything to be sure we were in obedience to the Lord. Sin is sin and there are horrible things in this world like disease, death, and pain, but they are not of God or punishment by Him. His love is unconditional.

Steph

Salome said...

God is so awesome, isn't he? My daughter has seizures too, though she hasn't been diagnosed with epilepsy yet (the doctor says they are from her other condition, if they are seizures, they are seizures and what difference does it make?)
I had never heard of this diet. Off to wikipedia I go.

Alexandra Stephenson said...

I am truly amazed by your story. Reading it brought tears to my eyes, just hearing all that you & your family have been through, and then all that you have accomplished through prayer & faith. God bless you all! :]

truth be told. said...

what an amazing story! God is so good. thank you for sharing.

DK said...

What a remarkable story. I credit your persistence, faithfulness and open heart for this wonderful outcome. Thanks for sharing this journey!

Courtney said...

What an amazing testimony to what God can and will do when his children are faithful and obedient! Thank you for sharing this story, Noah's journey. It touched me and I am sure it will touch anybody who comes to read it.

Btw, I had to laugh when you got to the crazy looking part. I could picture you doing that and it made me chuckle.

LMGory said...

I am really humbled that you shared your story - what perseverance and faith. Truly inspiring.

won a young (aka smile) said...

Wow, 200 seizures a day to zero? What a WONderful miracle!

Azúcar said...

The power of prayer and inspiration has no bounds.

The Little Window Shoppe said...

Our niece was just diagnosed with epilepsy, I know that her mom and dad were considering this diet too. Thank you for this wonderful information. :)

Apryl said...

Amazing story--I followed your link from owlhaven. My daughter was diagnosed in Feb with epilepsy. We started one medication and she had an allergic reaction so we decided not to continue with any meds. The neuro doesn't offer any alternative options. She just started depakote a few weeks ago (per neuro's 6 month check up and determination that her seizures may go away as a teen if we stop them with meds now). I'd be interested in hearing what sort of seizures yoru son has and how he is doing now, 2 years afterwards.

Thank you for sharing your story--it's an encouragement!
apryl

elena Melling said...

Praise praise the Lord of Hosts! Let all of Heaven's Angels Sing! I'm blessed and provoked to thinking that your first response was ridding of sin! Total repentence. We have experienced that kind of oppression-natural maladies being hightened to curse-like consequences because of sin. Thank you for that perspective of repentence.
Everett was just over 13 months this year when he had his first "unexplained seizure." The neuro doc's responded the same way to us as they did you and we resisted their prodding to start med's. We saw a homeopath dr. but what we truly found is that his body has a lower threshold for illness than most children and think it is a similar response to my husband who has migraines with poor health and diet. Anyway, thank you for sharing your story! I hope more parents come to find out about Ketogenics and also through your testamony about repentence!

mama meji said...

I am so touched with your story.