Ketogenic Diet Care Survey

October 21, 2024 • Research, Resources

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The Glut1 Deficiency Foundation recently conducted a survey of Glut1 Deficiency patients and families to learn more about their experiences with ketogenic dietary therapy and the care they receive from their medical team. We had 52 responses – learn what they had to say!

Biggest benefits of using ketogenic diet therapy:

*this is a word cloud – the bigger the word, the more frequently this answer appeared

Biggest challenges of using ketogenic diet therapy:

*this is a word cloud – the bigger the word, the more frequently this answer appeared

How would you rate the quality of your ketogenic diet care?

How far do you have to travel by car for your ketogenic diet care?

Challenges you’ve experienced with the care you receive from your ketogenic diet team:

They have been excellent and very responsive. Just wish they had a keto calculator rather than needing to calculate exchanges ourselves.
Problems with transitioning into adult care from Paediatric’s- no provision available.
One size does not fit all. What works for one patient doesn’t work for my situation. Also, blood work results aren’t always reflective of how well or poor my loved one is doing.
Understanding the individual needs/tastes of my child.
Lack of flexibility with meal suggestions (but this was many years ago)
Dietician never heard of it 25 years ago
Sometimes the suggestions I get for brands or foods in the diet are foods I don’t want to give him because they are unhealthy for anyone. For example, mayonnaise and ranch dressing, which is made out of unhealthy seed oil. Foods or drinks with artificial sweeteners. Deli meats with nitrites/nitrates.
follow up and response time when problems arise
Having to travel across the U.S. to see them at our own expense.
Not responding, hard to reach out, feel like doing it on my own
Being able to get advice in an emergency. Advice when need to give additional meds ie antibiotics when ill.
They want labs to be done in their institution
poor call back communication, poor follow through, out dietician doesn’t seem to be in the know.
Lack of diet support. Just here is the Ketodietcalculataor and good luck contacts us with any questions.
Lack of response or charging a co pay to talk or ask a question.
We are very fortunate to have an excellent ketogenic diet team that is supportive and responsive and collaborates well with other specialists helping us manage our son’s care so we are maximize therapeutic benefits while minimizing side effects. Traveling an hour each way for in clinic follow up and testing is probably our biggest challenge.
My challenge was getting to the care team…trying to get the best way by public transport, where my daughter didn’t have to walk far, taxis were out of our budget
Recently our care team is splitting GLUT1 patients into Ketogenic and Non-Ketogenic patients. This is very new. I didn’t pick this team because of their keto diet expertise. Ask me again in a few months. 😉
We have worked with at least 10 different dietitians over the last 8 years. They will have different approaches and most we don’t feel hear us or our concerns. When we have asked to change the ratio or try new meals, one dietitian will begin the process and a few months later a new dietitian will delete the meal or change it back. Our 22 year old son is still under the care of a pediatric program because there is no adult program in the state.
Slow response times, particularly in terms of not having control of adding foods to the calculator so I can make new meals
Generalization. Not every kid is the same, yet the diet is the same for their patients
Menu selection is very limited for a child and most choices are time consuming to prepare. Honestly a lot taste really awful also.
Our team is amazing. Our dietitian works with our GI doctor and Neurologist.
transitioning from classic keto to MAD – we haven’t made the transition yet but the team has not done this with others before
Lack of understanding and minimal direction. At times, we felt as if we were helping our dietitian to understand more about the keto diet.
I think they (fair enough) lack the lived experience of being in a family with a person on the ketogenic diet.
Dietician turnover over a 15 yr. period. This has been minor issue for us.
Our center has only 2 cases of Glut-1 so not much experience. Dietitian staffing limited.
We only had one 40 minute meeting with the dietitian and the rest we learned on our own. She wasn’t very supportive and we never returned
Biggest challenge is we do not have a ketogenic care team at all. That option was missing in the previous question.There are still places without support.
We love our ketogenic diet team but we are the only GLUT1 patient at our hospital so we have had to do some more research and trial&error on our side
We do most sessions virtually and wish they followed up a bit more. I could use more guidance on day to day meals as we get bored of same routine
We did not see eye to eye with our care team early on because they refused to agree with me continuing tobreastfeed. After arguing over it for a few months we parted ways and have worked on our own ever since…24 years now. (And of course now we know that breastfeeding is neuroprotective…vindicated!) Back then we created our own master template in excel that we continue to use today and update regularly to create all our own menus.It’s worked well for us over the years and our son is quite healthy. Although we’ve had a couple of rough patches during puberty and during a change in fats, we’ve weathered them and our son has mostly been seizure free since the first day after starting the ketogenic diet. It’s been a great blessing for us.
Keto team and neurologist appointments are done together via a video visit. I find the appointment is usually based on the question of, “how are things going” vs anything educational. They put a lot of time in upfront when getting started and now the focus is more ongoing support.
Updating recipes and keeping up with staff turnover
The lack of cooking demonstration and preparation.
Lack of understanding about how difficult it is to have your child comply
Recipes and visual guides/ recipes so my child can follow along
so far we don’t have a team, we’re only 1 week into it
They are generally receptive to questions, but I (mom) manage everything on my own. They have minimal experience with GLUT 1, so it’s always a question what level of ketones is right for us. They tend to lean higher, while as of the DC GLUT 1 conference, there was not consensus amongst Drs. I feel like I would still appreciate clarity on if exogenous ketones would allow the diet to be easier or if supplements like Butyrate would be helpful.

Highlights or most helpful parts of the care you receive from your ketogenic diet team:

Keto chef, keto recipes and videos of cooking the recipes , keto dietitians and nurse, list of products available to use that are most keto friendly.
They care about our child and our family. They help trouble shoot problems, provide feedback on different keto products, foods, etc.
Being able to call, state the worry and getting an answer asap
Regular video and phone call follow ups, quick response to email requests.
The smallest tweaks can make a big difference. We discover things simply by talking about every day stuff. We feel heard by our team & that matters a lot!
Very thorough with information
Helpful response when asking for advice, trusting that we are capable to manage the diet ourselves mainly
We have a keto chef who helps do private classes for my child when things are hard. We have access to a psychologist that specializes in keto kids.
My husband did all calculations
Very responsive. Very encouraging. Lots of great suggestions for diet variety and ways to add healthy fats and reduce carbs. Great team problem-solving.
providing add ons
They have a good deal of knowledge about Glut1 and the keto diet which is wonderful. Our team is supportive and encouraging too.
How to use the meter and how to log recipes for nutritional info
Suggestion of a new option, a trial I might be able to go through.
Encouragement and their joy in how diet has helped our son. The continuous weekly support for the first three months was immeasurably helpful. Could NOT have managed without it!!
a book about the diet
keep us in care even when our son has aged out, listened to our input after going to the Glut 1 conference and learned new things.
Neccessary bloodwork and paperwork for traveling ect.
Recipes or helpful shortcuts with the diet
Our keto team is highly responsive to any of our questions and concerns and they monitor our son closely. When we are unfortunately inpatient they meet with us to work through our needs and provide support while in hospital. They help us with plans/paperwork for school.
They have provided excellent training and resources for planning food/meals including providing a flexible range for macronutrient targets for meals and a keto calculator for meal planning. They closely monitor his bloodwork so we can adjust supplements as needed. They collaborate with nephrology to ensure renal side effects are minimized. They provide out of the box solutions to help us manage other side effects. They have helped us access programs that provide some of the nutritional supplies we need (Glycosade, MCT, KetoVie).
Definitely the support with starting out on the keto journey, being at the end if a phone and the info they gave us was invaluable
Switching to MAD and just being their for questions.
We are grateful to know that there is at least one Keto team in our state and that they have continued care for our son after he turned 18.
The well-rounded care we receive. The kindness and willingness to allow us to speak into our care
Having access to ketocal
She is always there for us either by phone or email. The first meeting we had she sat with us for 3 hours leading us through each step.
The knowledge they possess
Always being available to talk to through email. Them explaining things we don’t understand
The dietician and most definitely the keto calculator
Very patient and thorough in answering all our questions
We were provided with a clinical weighing scale
The approach that they have with the neurologist . During the same visit
They always promptly respond to email questions.
Access to the keto calculator to create our own meals and measurements of a variety of foods.
We were in hospital for the initiation week and a lot of effort was put into making sure we knew about calculations and blood levels and we felt very confident on leaving the hospital. They also gave us a few meals to take home with us.
Lots of good recipe ideas and flexibility to work with us. Emergency diet collaboration with oncology dietitians during cancer treatment.
Orientation to diet was overwhelming but practical (tools and resources required to be set up for success). Couldn’t survive without the database from the Charlie foundation. Advice re supplements required based on bloodwork results. Our province provides funding for special products. Would be helpful to have access to products for diets with a lower ratio than 4:1.
We know how many carbs she can have and how to count them
Very understanding and helpful with answering our questions or concerns
They are responsive and accommodating. They understand my daughter’s needs.
The preparation meetings before we started the diet were so helpful. They were accessible to us on a daily basis and so supportive in the beginning when things were all new to us. This support has continued but as we’ve become more use to the diet, we’ve needed their daily/weekly support less and less.
Support and encouragement, problem solving about ingredients and substitutions, helping me understand labels and nutrition, providing guidance with keto calculator
New recipes
They had an in person educational meeting of the keto diet and glucose checking. Meeting included handouts of the diet, how to figure net carbs. Diet goals broken down with snack and meal allotment. Also gave a handouts of recipes, how to handle sick days, and letters to caregivers, TSA, and hospitals.
The support and care is always available within reason.
recipes
I appreciate that our team operates like a partner. They don’t come in and act like they are the experts and I need to follow everything they say. They have my daughter’s best interests in mind. Ketocalculator seems to be the only tool, and as I mentioned, I don’t love it as so many of the recipes rely on heavy cream.
Recipes and visual guides/ recipes so my child can follow along