Last night at dinner I had a little revelation when Nora pushed away her plate and asked to leave the table–and her plate was empty!
One behavioral frustration with this diet has been hand-feeding Nora at almost every meal. She doesn’t fight it, but she has not eaten much on her own unless it is particularly appealing finger food. There have been many nights of sitting at the table talking with her while shoveling in the last bites (and it takes awhile, if you have ever experienced Nora in deep conversation. It’s hard to chew while so many words are coming out.) Or following her around the house with the last bites, or feeding her while she is in the bathtub.
Mostly I attributed it to the appetite-suppressing effects of the ketogenic diet. She is willing to eat, but doesn’t really feel like eating. We now also know that she was probably getting too many calories for weeks, so she was just full up. Now that her calories are reduced, she actually says “I’m hungry!” And thankfully, feeds herself.
A new food that is coming in vogue: celery! So juicy, crunchy and fiberous, it fills a girl up with almost no carbs (or protein, or fat). And Nora has now discovered pickles, a “sour power” treat with minimal carbs and lots of flavor.
And as we have not yet mentioned here, Nora ate a window gel cling thing (gummy bear-like consistency) this week. Chewed it right up. She had it in the car returning from a playdate with a friend. She kept trying to serve me “fish,” but I was driving and couldn’t see her. They are non-toxic and should pass right through, and Nora has not had any problems yet. But sheesh, like we needed that little moment of panic.
I’m soooooooooo elated to have been referred to your blog!! Nora is adorable! My son who is 5 yrs old, is on MAD. I’m so happy that I am not the only mommy that feeds her kid to make sure they actually eat. I just tell people that I don’t care if I feed him, as long as he eats and the diet his helping. He does a fine job at school on his own, but at home he is so busy to eat so I often times follow him around the house encouraging him to take a bite or bribing him w/ markers or cartoons if he eats!
We are all in this together Holly! It’s been wonderful to connect with other parents like you.
Nora has been eating everything by herself now (8 months after the post), so I hope to tell you that it’s a passing phase. I think she was getting too much protein on MAD too. Protein is filling. I think she’s happier on a higher ratio because even though the calories are the same, the volume of food is less (because fat has over twice as much calories per gram than protein and carbs). It’s trial and error to find the right fit for your kiddo.
How is he doing on MAD? We found that everything just got better on a higher ratio–seizures, behavior, eating, etc. I think parents should weigh the pros and cons of each level of the diet and find the right balance for their kid. If MAD is working, hooray!
We’ve had our ups and downs. In February Owen went 81 days seizure free, then its been a few here and there and then when he started school this fall, we lost all control. Nothing has changed other than school. So we are trying to slueth through some things and hopefully get back control. I know I could do a better job of pushing fat but reading your posts makes me wonder if he wouldn’t do better on a higher ratio, plus I could actually “see” that he was getting the right ratio. The drawback for me is I work 8-5 and I’m not great a thinking ahead for meal planning. Maybe if I did mass cooking on the weekend and froze meals?
Owen also has CP and several developmental delays. We did see a HUGE improvement in his behavior after we cut gluten or any low-carb products containing gluten. In fact that is when we saw the 81 days w/o a seizure.
Owen has Drop seizures, myoclonic and abscence seizures and is on Depakote sprinkles and Banzel. He’s only had a few abscence seizure since starting the diet, 1-2 myoclonic, its the dang drop seizures we can’t get a hold of. 🙁
There are days I feel defeated and days I just feel I don’t do a great job, but when I think back……this change in diet has done WONDERS for him overall. That is what keeps me going.
Your blog is very refreshing and I’m taking away some great ideas. I just bought a mini-donut pan on my lunch hour and going to attempt to make MAD friendly donuts. Wish me luck!!!
Always good luck! And a lot of it is luck. But we’ve learned to control as much as we can and take a deep breath when things get out of our control.
I don’t think I put in more time doing the keto diet vs. when Nora was on MAD. But we did MAD in a fairly strict way at the beginning so that we knew that we were giving her the right break downs. I was keeping track of carbs/protein/fat every day in my estimated meals (like 1/4 avocado, you know?) So by going to keto we added the gram scale and moved the targets for carbs/protein/fat to get the right ratio. And we get to the right ratio per meal instead of by the end of the day. We totally noticed that on days when she got a lot of her carbs early, she would start having myos in the afternoon and they would take a few days to go away. The meal-by-meal ratio helped her.
I have a post “Efficiency is Life,” and it’s true of all things keto. I do a lot of things in batches and ahead of time so that it’s ready to pull out of the fridge to make a meal. We have a small arsenal of foods in the fridge at all times to mix and match to make a meal. I’m not rigid about having “meals” ready, but having foods ready that can be balanced into a meal. Having a few at-ratio items on hand is wonderful too for when you really need something quick. I’ve got a few posts in my head summing up our daily routine and Nora’s current top-10 foods for more insights. I just need the time to blog! I work too and we have a busy 7 year old son, so we are always on the fly. But once the routine is down, it all gets easier. Then it’s just tedious and relentless, not hard. Having a kid with seizures is much harder.
We are also wondering about gluten right now because on Friday I noticed that Nora has been gluten-free for weeks, just from the normal foods that she eats. Then 2 days ago she had some low-carb tortilla that’s ok for the diet, and the next morning she has a rash on her face. We are going to try an elimination diet approach with gluten and see if that pattern repeats. Very good to know.
my daughter 3 yr old has epilepsy and started KD diet 2 weeks back. she is also on Keppra and Onfi. she used to be very nice and now we are dealing with aggression ( mostly hitting, biting and scratching. she does it for no reason and she is generally happy otherwise. we noticed the aggression after increasing Onfi. for example today she hit scratched her teacher at school and they sent her home. i am feeling so upset and dont know how to help. christy, i followed your blog sometime now and inspired with nora’s success with KD. i see you had mentioned about her aggression in this blog. how did you dealt with aggression, did it get better without doing anything? i tried to explain it to my daughter, taken away toys but nothing helped. they tried isolating her at her school when she has moments of hitting etc but they didnt help either. she is at montessori preschool. please help if you have any ideas. we are working on reducing her ONFI/Keppra but her team dont want to reduce the medication until she is stable on the diet.
It is so difficult to deal with the aggression that comes with the medications. It’s not your child’s fault, and she has very little control over it, especially being 3. I think it is more a matter of the adults understanding that she doesn’t have a lot of control over her behavior and working with her, or setting up an environment where she doesn’t feel threatened. I understand that it is hard for teachers (our kids were in Montessori preschools too). But the adults have control over the environment, and a poor little 3 year old on these medications has very little control over her own behavior. I don’t think punishing or isolating is going to help her.
Nora’s team also did not want to reduce medications until she was stable on the diet, but if it was clear that one medication was not working (Keppra was first?), I would try to talk about reducing at least one of them. We weaned off Keppra when we started on Depokote, and I was thankful that we didn’t have her on 2 drugs at full dose at the same time. If there are side effects from the medications then you know that the medication is doing something, but maybe not the something that you want it to do, if it is not helping control seizures. It’s a very difficult situation, and you know your child best, so try to think clearly about her needs and communicate that her to doctors and teachers.
I feel for you, but you are only 2 weeks into the diet so be patient and keep working at it. Extra love and attention to both you and your daughter are the best medicine right now. It will get better.
Best to you,
Christy
thanks christy for support and advice. i appreciate it. it affects her stress level when we talk about her aggression and how she has been treated at school. we are trying to get help in having school therapist come and observe her in the classroom but i am also considering in changing her school or pulling her out temporarily and keep her at home with limited school hours by hiring nanny. she likes to be at home obviously :). in fact she had a seizure yesterday and today at around her medicine time. i dont know whats causing it but trying to split her keppra dose into three times a day instead of twice a day to see if it would help with reducing seizure frequency. before diet she used to have seizure once in 4-5 days (TC) ( long history and her seizures got worse after MMR and DTAP) and her last seizure before yesterday one was 10 days back so diet may be doing something but i know we need to change something to get better control.
another thing i noticed is that her ketones vary a lot during the day. we measure in urine. her morning one before b’fast is higher and does the evening one around 5.00PM. today i noticed her morning ketones after b’fast was at trace amount and then got too higher by around 1.00PM and was still higher at 3.00PM and then right before her seizure , her ketone was small to moderate. i measured her ketone at blood and blood sugar after her seizure and that was 7.2 and 100 so i am confused why the blood ketone will show high but urine ketone before seizure are not. blood sugar is high as well. she didnt eat anything after her snack at 4.30PM. we have a hardtime in meeting her fluid goals. have any thoughts on what these numbers mean and any adjustment can be made? she is at 3.25:1 ratio with 1000 calories ( 3 meal and 1 snack). please help if you have thoughts. i appreciate your support here. i used to live in seattle before moving to CA. in fact Riana was born in seattle , WA.
We also took Nora out of preschool to have better supervision at home, and she liked to be at home too. Our Montessori left snack out for children to serve themselves (which is fitting for their emphasis on independence), but that leaves a lot of room for a small child to snack on crackers and no one might notice. It might be a good idea to keep her at home for awhile until you get some seizure control. We also thought Keppra was making things worse, not better. There is anecdotal evidence of that but not hard research. In any case, we wanted off Keppra–even if it wasn’t making things worse, it sure wasn’t making anything better.
I think you need to be very careful about interpreting the urine ketone readings. Remember that the urine collects in the kidneys and waits until there is enough to be released, so you are not getting a really good reading of what is going on in her body at that moment. You are seeing a collection of the last several hours. You might not be able to tie it directly to seizure activity. That said, we were noticing that Nora’s last seizures happened in the middle of the night, so we started giving extra fat at bedtime, including a dose of 5 g coconut oil, so that her body would have enough fat to process to keep up ketone production until morning. Our dietician said to give 5 g coconut oil 3 times per day, morning, afternoon and before bed. Coconut oil is easier to process into ketones and might help keep a steady level all day.
I hope that helps. If you had 10 days seizure free, then something must be going right. We couldn’t explain the last few breakthrough seizures that Nora had. It will take time to get complete seizure control, but it’s a big step if you are already seeing longer breaks without seizures. Keep up the good work, and start advocating for the decrease in Keppra. I think it helps to start the conversation, let the doctors know that you are thinking about it, and set some milestones for when they will agree to weaning off a medication.
Hang in there. It will get better.
Christy
Thanks Christy for your response. i am thinking of the same of pulling her out of the preschool for now until getting seizure control. thanks for the information on urine ketone, we got blood ketone strips but dont want to poke her often to understand what’s going on and the cause for seizure so we can adjust if any. coconut oil is a good idea and i am trying that from today. do you calculate with the food or just give additional 15g coconut oil on top of set calorie goal.
taking Keppra off is always on our list of goals and we will talk with doctor about it on our upcoming 1 month follow up. thanks again for kind words and keep you informed how things work out for Riana. thanks.