Jaron was born during an ice storm in December of 2009. It was a scary drive to the hospital, but we made it. Then Jaron was born with a hole in one of his lungs. Being the resilient kid that he is, he healed quickly and were on our way home in the normal 48 hours. Jaron developed normally and was a very easy kid to raise and he hit all of his milestones on time.
The day before Jaron’s second birthday, we were having lunch with friends when s
omeone asked, “What is Jaron doing?” I looked over to see Jaron’s eyes halfway open and his arms and legs were jerking up. It happened quickly and he was back in reality again and acting normal. We thought maybe he was falling asleep and his body was jerking like one does before you fall asleep. These types of jerks became more obvious over the next few weeks. He would only have one a day, but the duration was getting longer. We decided the jerks were something that needed to be checked out by a doctor. The doctor decided Jaron needed an EEG. The EEG confirmed the fact that Jaron had epilepsy. We were referred to a neurologist and he was put on Keppra. The Keppra worked. After a year of being seizure free we thought we were just coasting into the 2 year finish line when we could wean Jaron off the medicine and forget anything had ever happened.
March 10, 2013, proved us very wrong. Jaron woke up on a Sunday morning groggy and not feeling well so I decided to cuddle with him on the couch. While we were cuddling, Jaron would have his first of 3 tonic clonic seizures that day. Each tonic clonic lasted 3 minutes. He would go to sleep after the seizure only to wake up and have another. Since he had never had a tonic clonic before, we took him to the ER. While we were waiting for doctors and tests results, Jaron sat on the bed and screamed. The seizures had made him so disoriented that he didn’t know what was going on. He screamed because he was scared and he refused to drink. They finally admitted Jaron and gave him an IV medication to stop the seizures. The next day we were sent home.
Two days after his visit to the hospital, Jaron’s daddy went in to Jaron’s room to check on him and witnessed what would the first of hundreds of drop seizures. We informed his neurologist what we were seeing. He suggested we start Jaron on Depakote. The Depakote worked for a few weeks, dropping his seizures form 80 drops to a day down to zero for a few days. Then its effectiveness wore off and the number of seizures increased again. We played the up and down game with Depakote for two months. During those two months his neurologist never told us what he thought was wrong with Jaron. We wouldn’t see him and he never called to tell us what was wrong. He would only have his CNA call with medication changes. After two months, we realized that the Depakote wasn’t working so the neurologist sent a prescription for Clonazepam. There are a lot of side effects with Clonazepam. I gave Jaron two doses and saw my 3 year old walking around like he was drunk. I decided I wasn’t going to give Jaron another dose until the neurologist would tell me what was wrong.
Since the neurologist wasn’t communicating with us, I decided I should do my own research and came across a type of epilepsy called Myclonic Astatic Epilepsy, also known as Doose Syndrome. It fit the description of Jaron’s situation perfectly. I knew in my heart this is what he had. As I researched how to treat it, I became scared because it can be very difficult to treat as it usually doesn’t respond well to medication. One beacon of hope in reducing or stopping Doose seizures was the Ketogenic Diet. I did research on what it would take to get Jaron on the diet. Doernbecher Children’s Hospital in Portland had a Keto program and I contacted Jaron’s Primary Care Physican to begin the referral processes. She told us it would be a month before we could get into to see someone at Doernbecher. I decided to us that time to prepare our family for the changes in our lifestyle that would happen when Jaron started the diet.
Jaron’s first keto meal in the hospital. Turkey, lettuce, mayo, and cream.
It was during this waiting period that an article in the local newpaper featured Nora’s story. I contacted Ted and Christy through their blog and within a week was sitting in their dining room discussing what I would need to be successful. As I walked out of their house my husband called and said that Jaron was falling every 2-5 minutes and that we were headed to the emergency room. The ER doctor transferred us to Doernecher. The next day the doctors at Doernbecher did an EEG to confirm that Jaron had Doose and at my request Jaron was started on the Ketogenic Diet at a 3:1 ratio.
I would like to say the diet was an immediate success… but it wasn’t. It did drop the seizure count down to 70 seizures a day. This was a big improvement form the 200+ he was having. Over the next 3 months, we steadily increased the ratio. During those three months, Jaron put his teeth through his lip several times. He had scraps and bruises on his head form falling. We had to get him a special epilepsy helmet. Two week after being at a 4:1 ratio he was still having seizures and I wondered if the diet was really helping. But I promised the dietitian I would stick it out 6 months so I pushed through. Finally a month after we transitioned to a 4:1 ratio, Jaron went seizure free. He would go two months seizure free before having a few breakthrough seizures. November 11, 2013 Jaron had his last tonic clonic in the early morning hours. We are now 16 months seizure free and we have weaned him off the Keppra and Depakote that he was on from the beginning. We are now exclusively on diet therapy.
The diet has not been easy, but has been worth it. There was a rough spot in the beginning where we struggled to get Jaron to eat his food and take his medicine and supplements. Lots of tears and begging and bargaining to get the food down. It has taken work to create foods similar to what his peers are eating. It is worth all the hard work because today Jaron is a normal 5 year old boy. He loves the food he eats now. Best of all, I not longer have to fear him falling at any moment and hurting himself.
Ever since my son was diagnosed, I feel like I cannot soak up enough information. I am constantly searching for new ways to help him, new recipes to make him, and stories of others who are experiencing the same. Through my searching, I found Nora’s story. It was great to see that there was light at the end of the tunnel and that the diet could be this awesome!
Thank you for sharing Nora and Jaron’s stories. For people like me that are constantly searching, hoping, frustrated at times, and praying…it is a comforting thought to see others experiencing the same.
I began my website (ourketofamily.weebly.com) just a couple of months ago and (in my spare time, which you know from experience is few and far between) I have been blogging and inputting our recipes. It is still a total work in progress, but my hope is that we can also help families that are just starting on the Keto journey!
Thank you again for your stories and your resources! I look forward to hearing how Nora and Jaron continue to enjoy their seizure-free days!
Sarah Ackerman
Thanks for getting in touch Sarah, your blog is wonderful! I like how you used screenshots of the Ketocalculator (correct me if I’m wrong). I’m so happy to hear about the great success that Will has had with the diet. Interesting that his doctors said that his idiopathic generalized epilepsy with normal development has a strong genetic basis. They didn’t say that about Nora specifically, but we did some gene testing and her doctor feels confident that in 20+ years when she is ready to have kids they will be able to tell her the genetic basis and whether her kids will be at risk. Interesting to see the similarities in their stories too.
Keep up the good work, and best wishes to you and Will and your whole family.
Christy
Hello! My 3 year old daughter’s diagnosis has gone from Generalized Epilepsy, to possibly Lennox-Gastaut Syndrome, to now possibly Doose Syndrome (although not confirmed, and EEG is still showing as Generalized Epilepsy). We had an appointment yesterday (6/14/16) with Dr. Wray and Ali Parker at Doernbecher’s Keto Clinic, to hopefully get her started on Modified Atkins. She has failed 5 AED’s, currently on 3 (of those 5), still has 10-15 drops/myoclonics daily, and about 4-5 grand mals a month.
I was wondering if I could get some info on the support group through Doernbechers. We live in Bend, but will be traveling frequently to Portland for her appointments. Or someone that wouldn’t mind reaching out to us for help.
Dr. Wray spoke highly of this blog and even mentioned our daughter reminded him of Nora. My husband and I are both feeling extremely overwhelmed at doing MAD, as we did a ‘trial’ run a couple weeks ago, and her seizures increased from 15 a day, to 70, so we are very nervous to try again.
Hi Nicole–you are at the hardest part. Dr. Wray is great, and I really hope that this is the answer, even if the trail run didn’t go so well. It sometimes takes a long time to get seizure control, but I don’t know of any reason why MAD would increase seizures on its own.
We are in Corvallis, so we aren’t right in Portland. We would be happy to help and be in touch via email, or I don’t know your route from Bend to Portland, but maybe we can set up a way to meet. I can email you directly.
Christy
My 2 year old son was just diagnosed with doose syndrome 2 weeks ago. He starts the ketogenic diet at a 3:1 ratio starting April 24th. I have been searching and searching the internet for information on how this works and what a life of a “keto kid” looks like. Thank you so much for sharing your stories. It definitely gives me hope during this very scary and nerve-wracking time.
Hi Kaytee, I hope that the diet gives your son some quick relief. For some kids, you have to try for awhile, but any little improvement feels like a ray of hope. The diet is definitely the best treatment for doose (as I understand it), so you are totally on the right track. Please let us know if you have questions–we are here for you!
Christy
Hello,
My 6 years son, was diagnosed with doose syndrome, now he would suffer 15 drop seizures daily.
We have been trying several AED without any improvent, each one got worse during one year now.
3 weeks ago we started with MAD, we have seen small improvement but only on congnitive side,
nevertheless number of drop seizures are equal, only 3 days we saw 10 seizures instead of 15.
We are very nervous because we have read normally diet results could be seen in the first 2 weeks, and we are starting 4 week.
Also we wonder the convenience of changing at classical diet or maybe it’s soon.
Thanks,
Mery
Hi Mery,
Sorry that I am late in this response. I can understand your concern with not seeing a lot of improvement right away. But I wouldn’t be concerned yet. When Jaron went on the diet, he started at a 3:1 ratio. When he was sent home he was on Depakote and the diet. We kept going up on the ratio. We saw some small improvement but he was still falling a lot and banging his head on things. I remember 2 months into it Jaron had fallen and given himself a huge gash on his head. I was getting worried that the diet wouldn’t work. But then a month later, after he had been on the diet for for over 3 months, he started having seizure free days. It wasn’t until he was on the diet for 6 months that we went completely seizure free. When we started the diet our dietitian told us to give it a good six months to a year of tweaking before we should decide to stop the diet. I know that is a long time. I know it is difficult. The first 3 months are very hard, but I would still give it time. Work with your dietitian to tweak things. I will check in on you and see how you are doing. Amanda
Thank you for sharing your stories. My 2.5 year old was just diagnosed with epilepsy. The doctor did not mention Keto diet. I will inquire. I have 2 questions. 1 where can I get recipes and 2 my daughter has high cholesterol. Will that eliminate the option of a Keto diet
Hi Chris, sorry to hear about your daughter’s epilepsy diagnosis. In our experience, it’s a tough thing to manage and you should feel confident bringing ideas and observations to your doctor. If your area has doctors that are trained in the keto diet, all the better.
I am not sure if high cholesterol will be a factor that your doctor will consider. They did check Nora’s cholesterol level the whole time, and I don’t remember it ever being an issue–maybe that it was not high, but I definitely remember information that said that even if the child’s cholesterol is high on the diet, it will correct after treatment is over and won’t be a long-term issue. That said, if there is some other underlying issue causing high cholesterol, your doctor might have reasons for avoiding the diet but I would check those carefully and not just use it as an excuse to say that the keto diet is not an option.
There are lots of keto recipes out there. This site has several, but they are homemade–I did have Nora’s dietician check some of my recipes and she used/adapted them for other families that she worked with. If you start the keto diet you will work with a dietician who will set up meal plans and teach you how to administer the diet, and you can rely on them as much or as little as you need to. The Charlie Foundation has a lot of recipes and great info and resources: https://charliefoundation.org/category/recipes/ We also ordered the Keto Cookbook, which was very exciting for Nora: https://www.amazon.com/Keto-Cookbook-Innovative-Delicious-Ketogenic/dp/193630323X
When we started with Nora, we took it slow and just did a Modified Atkins Diet, taking carbs out of her meals and adding more fat. We could see a difference in her seizure count and mood, so we knew that this was helping before we went to the more restrictive keto diet. Jaron had Doose syndrome, which is treated very successfully by the diet so they went with the hospital induction and straight into the keto diet. You can talk to doctors about your child’s diagnosis and what would work best for your family.
Good luck, keep in touch and feel free to ask questions or get support here!