This week we are refreshing our blog! After almost 5 years of living with the reality of epilepsy, treatment and recovery, we are taking stock and updating our blog to reflect where we have been and where we are going.
You will notice the new look at the new name: Oregon Keto Kids. Now that Nora is almost 3 years seizure free and we are weaning her from the diet, we are turning our attention toward supporting other families as they use the ketogenic diet to overcome epilepsy. Of course, this blog is always for everyone, no matter where you live, but it is also a central part of the more hands-on support group we will form for parents who are starting the diet at OHSU Doernbecher Pediatric Neurology’s Ketogenic Diet Program. The first step is working with other families who are emerging from their journey with the ketogenic diet armed with the experience to reach out to support others.
Thus, we welcome Amanda and Jason Swick as co-bloggers at this space. Their son, Jaron, was diagnosed with Doose Syndrome when Nora was about 1 year seizure-free. They connected with us after Nora’s story was in our local newspaper. We are all grateful that our story was told and that another little person and family could use the ketogenic diet to overcome epilepsy. The Swicks are an amazing family and they are also ready to reach out and support others.
During the next few weeks I will be updating many of our main pages. I haven’t looked back at them in ages, and see how out of date they are! It’s time to re-write Nora’s story and call on our experience to re-write the other general informational pages.
It’s an interesting experience to look back at those times, remember what we were feeling and experiencing, and to see the journey to now. We are thankful that it went as well as it did. Ted and I feel that we don’t have a lot more to say on a regular basis and are not making as many recipes anymore, so maybe we will spend some time curating the blog for the “best of” and doing some summary posts of the challenges that we faced.
Amanda will be blogging about Jaron’s experience (you can read Jaron’s Epilepsy Story now, and look for updates in the future). She also has experience with Doose Syndrome, the Keto Calculator, reflux, kidney stones, camping and more, so you will learn a lot from her experience and perspective.
Our blog-refresh plans are not done yet, so we will keep you posted as we make changes so that you can stay in touch. We are always happy and grateful to hear from other parents and supporters.
And we are looking for support! If you want to help get the support group off the ground, we will be looking for volunteers to help us get donations to buy basic supplies for families, print a welcome packet, buy books about living with food restrictions for kids, etc. We would also like to contact some of the companies that make good keto foods to get coupons or other discounts (for coconut oil, macadamia nuts, nut flours, cream, etc.) Please contact us if you want to pitch in; donations will go through the Doernbecher Foundation and will be tax deductible!
Congratulations on the new blog look and the new venture! So excited for the support group to get up and running… even though we are muddling our way through the early months on the diet, we’d love to help! Leslie and Annie
So happy to have you with us Leslie! Don’t worry, after you have a year of amazing success you can be one of the supporter-parents too! You guys are amazing. Keep in touch.
We have been following your blog for few months now. Thanks for all your informative posts and congrats on the new look. We live in Seattle area and have been on the diet for little over 7 months now. It took about 2 months to get seizure control. We are waiting for 6 months seizure freedom to start medication wean. Praying it goes well. Your story gave us hope when we failed medication after medication. It helped us stick to the diet even during difficult initial months. Thanks for that.
Congratulations on getting seizure control! It’s so important to spread success stories to give us all some hope and keep us motivated. Good job–keep at it and stay in touch!
Congrats on starting your support group.
As adults on MAD, my friend and I are starting a group for teens and adults on any of the Ketogenic diets (or the LGID) for epilepsy on Facebook. If you have any teens or adults coming to your support group, please suggest they join us by searching for “Life on the Diet” on Facebook.
Also, thank you for your spreadsheet, we are currently discussing apps & tools for tracking our diet.
Thanks for sharing your group Julie, we will send folks your way! We have a few adults who contact us occasionally, so it’s great to have more resources to share. Our best to you.