Little Nora is not so little anymore. In June we celebrated her 9th birthday. We also celebrated by updating Nora’s epilepsy story to tell the story all the way to seizure freedom, so please take a look: Nora’s Epilepsy Story
She is healthy and doing well. In a few weeks she will head off with her brother to a 2-week Norwegian culture camp on the Oregon coast. This would have been unthinkable until only the last year or two. I’m a bit apprehensive, but she should be fine. We’ll send some snacks and meals for her, and trust that she’ll make good food choices.
For her birthday cake we enjoyed a delicious cake of Christy’s creation. It was the Chocolate Poundcake recipe, made into full double-layer cake instead of cupcakes. Everyone had a slice. The frosting was cream cheese whipped with a bit of honey and half-n-half to thin it. She specifically requested a pool of chocolate and a strawberry on the top, so we went all out with drizzling melted dark chocolate and cutting strawberries lengthwise to make hearts. For presents she was ecstatic to receive a Hermione wand (from Harry Potter) and a flute.
Nora is healthy and independent. Many keto kids fall behind on their growth, but at her yearly well-child check up she was holding steady at the 50th percentile for height, which is where she has been pretty much her whole life, and 37th percentile for weigh, so she looks long and lean. Maintaining a low-sugar diet seems good for her health overall, as she almost never gets a cold or flu. She wants to be a children’s author when she grows up, with a side-job as a substitute teacher when she is between books. She does have a flair for language and is writing Harry Potter fan fiction (no spoilers).
I don’t worry about her so much anymore, at least with regards to seizures. Well, I don’t worry perhaps, but I do still think about it from time to time. Once or twice a week when I’m at work I’ll wonder what she’s doing and if she is OK. I’ll still imagine that the phone might ring and it will be from her school. But then that doesn’t happen and I take a breath.
Keep going Nora. And Happy Birthday!
So happy to read this. Gives so much hope. Our little one has been seizure free on the diet for 32 months now. We are heading to an EEG in 2 weeks to see if we can start the diet weaning process. I am terrified of the moving out of the diet safety net. Its hard not to imagine the worst as we lived through it for over a year.
Belated Birthday wishes to Nora. She looks beautiful
Thanks Renga! Sending all of our good thoughts for your little one. The wean is kind of scary, but just take it a day at the time and know that you can ramp up the diet if you need to. You have a safety net! 32 months is a long time, you have put in so much work and know what you are doing. You will look back later and wonder how you did it! I think that all of the time 🙂
It is so great to hear that Nora is doing good!
Thank you for your blog. It keeps my hopes!
My daughter has been 2 years seizure free on keto, and then two weeks ago again:( 2 seizures within a week, nothing changed, the same diet, but it just happened when I finally started to calm down.. Did you have any relapse on your journey?
Hi Diana, I’m sorry to hear that your daughter had seizures again after so much success. We had relapses early, it took about 5 months to get seizure free, with weeks in between seizures, but after that last one we went 2 years before weaning her from the diet with no new seizures. We feel lucky.
Does you doctor have ideas about why she had the seizures, and are you continuing with the diet? I know that other kids have to be on the diet for many years before all of the seizures finally stopped, and one family I know went up to a 5:1 or 6:1 ratio for a short time to stop all seizures. I think it also depends on the reason for the seizures, whether it is Doose syndrome or GLUT-1, or something else I don’t know much about. So don’t lose hope, every day seizure free is helping your daughter grow and develop with a healthy brain. Sometimes it just take a lot of time.
Christy
Hi Christy, thank you for your reply. We continue with the diet , though had already 1:2 ratio for last year without seizures.
My daughter, 7 years old, has Rolandic Epilepsy with previously seizures once in 3 months. And keto was my choice to avoid medications. There are no obvious reasons for sudden relapse and we hoped for outgrowth already. Our doctor orders EEG and MRI again after 2 years to check for the reasons.
Sorry to hear it Diana, especially after such a nice long run of seizure freedom. Hang in there.
I don’t know much about Rolandic Epilepsy but it is not usually considered one of the epilepsies best treated by the diet. So it could be that the diet is working, but perhaps its effectiveness is a bit limited for this disorder. It also could be that there has actually been some seizure activity in the last two years you have missed (e.g., nocturnal seizures, or isolated myoclonic or absence seizures). I know that is not fun to consider, but something to keep in mind that what seems like a sudden recurrence could actually be just the manifestation of something that was low lying anyway.
Hopefully the good news is that Rolandic Epilepsy — as I understand it — does tend to be self limiting with good outcomes eventually. So hang in there! Let us know if we can help. I think your daughter has a bright future.
I want to thank you for your blog. I found it quite by accident 3 years ago when our 6 year old started having uncontrolled myclonic seizures out of the blue. The dispair, confusion, anger and frustration we felt was all consuming. The ketogenic diet came up early in our research but because of ambivalence in our medical community and some well respected medical centers we traveled to-our daughter was not placed on it for 10 months. We recalibrated and saw Dr. Whirrel at Mayo and she recommended the diet.
The early months were very hard but we all persevered, successfully weaned her meds and did Keto as monotherapy for 2+ years with seizure freedom. We recently returned from Hopkins to discuss how to wean from the diet.
Your blog so accurately articulated so many things I was thinking and feeling that I have shared with family and friends who have a hard time wrapping their minds around this crazy journey.
Thank you for your courage, openness, creativity and spirit of hope.
Hugs from NW Florida ❤️
Thank you for sharing your story Kim! Congratulations to you and your family, it’s always so wonderful to hear another great keto story. Weaning is scary and surprisingly hard once you are in the groove of keto. We have some posts about how we went about it, and how we had to change our thinking about ratios and everything. I hope it’s smooth for you, and it’s certainly a wonderful feeling to make that progress.
All of our best! Hugs to you from Oregon! Christy