After about 6 years I've decided to revise this story. I will include the original below, but my heart has struggled recently with who I was when I wrote it (it is still very much our story) and who I am now.
On Thanksgiving Day 2003, Noah was 2 1/2 years old and had a grand-mal seizure right in front of me in our basement. I thought he was electrocuted, but there were no outlets nearby. Soon we'd find out that it was a seizure. He slept on me afterward, in my arms in the ambulance. And finally woke up some time later at the hospital.
We were told it was probably an isolated incident, his tests and scans all came back normal. Many children have a seizure at some time or another, it probably wouldn't happen again.
Well, it did. He had one about a week or so later and we again rushed by ambulance to the hospital. This time his tests were not normal. He was put on medication (Topamax) and we were assigned a neurologist. Things become a blur when I think about this time because all of a sudden he went from 1 seizure a week to about two hundred or more a day. All sorts of seizures from staring spells to drop attacks to grand mals, any kind and every kind.
He had to wear a helmet at all times, he lost his speech, and soon his ability to walk and do many activities. It was like we were watching him waste away right before our very eyes.
Our pediatrician and neurologist at the time didn't know what was going on and (from what it looked like to us) they showed no sign of trying to find out what was wrong with him. Their only plan was to try more meds. And that only made Noah worse.
We went out on our own and miraculously got a last-minute appointment with a pediatric epileptologist at Children's Memorial of Chicago's Epilepsy Center. She immediately was able to diagnose Noah (finally) (and when I say immediately, it was like 10 minutes). He was diagnosed with Myoclonic-Astatic Epilepsy, also known as Doose Syndrome.
We were offered a couple options- try another medication or try the Ketogenic Diet. We'd heard of the diet- we had previously asked our original doctors about it and they said "nobody does that anymore. It's too hard. It doesn't work."
But they couldn't even diagnose Noah.
We fired those doctors.
This (wonderful, amazing, answer to prayer) doctor at Children's had experience in this condition and knew first-hand that the Ketogenic Diet had a nice success rate with Doose kids. We were on board. We did start a new drug (Keppra) with minimal side effects, and chiropractic treatments with moderate success in the meantime until we could start the diet.
Noah started the diet a few weeks later in March 2004 (initiated at Children's Memorial. I stayed with him the entire time.) By the 4th day of the diet, he was seizure-free and we were sent home.
He came off Keppra within a couple months and continued on the diet for 8 months seizure-free, and in October 2004 he had a grand mal seizure that we believe was from an ear infection. He never had another seizure. As of this writing, it's now been 5 1/2 years. :)
Noah was on the Keto Diet for 2 1/2 years and weaned from it completely in the fall of 2006. He's remained Diet-free, Med-free, and Seizure-free all that time. It's pretty awesome.
I wrote a bit about the diet in the past here. The Ketogenic Diet is in no way easy. Nope, not at all. But it is SO WORTH IT.
related: we strongly believe the vaccines Noah was given as a baby play a large role in Noah having the disease of Doose Syndrome. Through discussions with other parents with Doose kids and other vaccine-damaged children, and many years of research, we are convinced vaccines do more damage than good, especially to children at risk. And thus, the question... how do you know your child is at risk?
We immediately stopped vaccinating our children and will never again. I urge you to know all the facts, laws, and your rights regarding vaccinations before you decide to vaccinate your child. And yes- it is your decision. Not anyone else's. Including me. :) So please do not let my story dictate whatever you may decide. Read, research, ask questions, attend classes & webinars, talk to your doctor openly, stay up to date with the latest news and vaccine recalls, and be armed with all the information you can to back up your choice.
also: be willing to treat yourself or your child with a diet change in addition to/or instead of pharmaceuticals. It is more time-consuming and exhausting, but SO WHAT? -it could be your cure.
original version, written some time in 2004
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!
*Updated December 2009- you can hear a podcast of my interview about Noah's Story at Pink Floats. Listen to Don't Give Up PT2.