Epilepsy & The Ketogenic Diet at School
My mom, Arlene, has been a Registered Nurse (RN) for almost 40 years. Through her career she has worked in the OB/GYN, Pediatrics, Med Surgery, Oncology, and Dialysis. For the last 16 years she has been the school nurse in the same elementary school where I attended as a kid. During her time in school, she has experienced a vast range of medical issues in her students including blindness resulting from a detached retina, scoliosis, brain tumors, "lost" erasers in noses, severed finger tips, leukemia, bone fractures and even seizures. There have been two kids treated with the ketogenic diet come through her office as well. My mom has an interesting and uncommon perspective of seeing the diet work! Her answers to the questions below are in italics.
Please note that I am not providing any medical or legal advice in this post. I am sharing personal tips and links to other information that I have found to be helpful! Everyone's situation is unique and will require your own personal research and education before implementing the ketogenic diet at school.
In General, what are the most important pieces of information you need from parents?
BEFORE or ON the first day of school, you need to have:
1. Current contact information for emergency and non-emergency events.
This means have correct and current phone numbers for parents and emergency contacts for home, work and mobile phones. One of the biggest problems can be contacting a parent when needed. On average it takes me 5-6 phone calls to reach a parent or caregiver. For emergency contacts, make sure the person(s) listed is aware they are an emergency contact and they are LOCAL, not grandparents 5 states away! Fill out and return the school emergency card immediately!
2. Required Medication WITH Dr.'s orders.
For medication that needs to be taken on a daily basis while at school, most of the time it requires forms from your school or state to be filled out by the prescribing physician with the name of the medication, reason for taking, and instructions. It is also important to list possible side effects the medication can have. Make sure the orders on the form match the instructions on the bottle! Sometimes doses are changed over the phone and prescriptions (instructions) are not updated. Make sure this is fixed before school starts.
Some states allow health offices to administer Children's Tylenol without parental/caregiver consent. If (in the case of the ketogenic diet) you do not want this to be given, you need to opt out or specify not to give it in writing.
ALL medications in school, even over the counter (OTC) vitamins and supplements require Dr's orders.
3. Make sure EMERGENCY medications are in the health office WITH Dr.'s orders.
This includes inhalers, epi-pens, and Diastat type medications. Even if there has not been an asthma attack, seizure or any other known acute medical event in a significant period of time, it is best to keep emergency medications in the health office in the case of a life threatening medical event. The school health office is NOT a mini hospital, during a life threading medical event, the nurse or health aid will administer emergency medication if provided and call 911.
Here is some specific information on the laws regarding the administration of emergency medications in school settings. Please know that currently, there are NO states that prohibit the administration of rectal medication with proper written orders.
Here are some helpful printables to provide to your health office. Keep in mind that there will be a substitute nurse from time to time. It is best to provide very clear instructions on how to administer emergency medications.
How to administer Diastat
How to administer Intra-Nasel Medications (Versed, Midazolam)
Now onto the ketogenic diet specifically. What accommodations were made to help maintain it properly at school?
When the student was first started on the diet, she chose to eat lunch at a small table in my office when she was having a rough day or just needed a break from the busy cafeteria. This also was to provide extra supervision to make sure meals were eaten properly. We also provided refrigeration for cream and food. She had access to a microwave if meals needed to be heated. Eventually (by 5th grade) she ate lunch in the cafeteria everyday with minimal supervision. In 5th grade she was also weaned off the diet, her whole class celebrated with her, they all ate a Jello cake!
There was always a "special treat" stored in the refrigerator for birthdays and class parties. In her case it was usually sugar-free Jello and heavy cream. A "free" flavored popsicle is also a great option since it will last a long time in the freezer. If your school has a "No Food in the Classroom" policy, this issue will be much easier to deal with.
Eating lunch and snack at school is usually the biggest concern regarding the ketogenic diet. You may even have to adhere to a "nut free" policy if your school has one.
1. Pack meals that are easy for your child to eat. I personally prefer all-in-one meals for school, such as cheese crackers, crunchy chicken salad, yogurt, mac & cheese, scrambled eggs & cowboy sushi type meals.
2. Try to avoid sending cream to drink as part of the fat, too often it is spilled or not finished. If you do use cream, ask to keep extra in school with instructions on how to deal with spills. You will also need to provide a scale to keep at school.
3. If eating a keto lunch in the cafeteria is too stressful for your child or causes too many problems, ask for an alternative location to eat lunch.
4. Make sure the aids or teachers understand the importance of finishing meals and scraping bowls clean. Ask to stay for lunch during the first week of school to help train them personally. If you are unable to do this, make sure it addressed in meetings prior to the start of school. A reminder note in the lunch never hurts either!
Did the student have a 504 plan or IEP?
Where we live, a 504 plan was not needed to have her needs and accommodations met. The ketogenic Diet team provided written Dr.'s orders stating that the diet was a medically necessary treatment for epilepsy and that she needed to eat only the food provided by her family. It also stated that she was never to eat anything that was not packed in her lunch. Her team was not concerned with topical items like glue, play dough, lotions and soaps, so this was not a problem. If this is a concern, a 504 plan may be needed. She did not have an IEP because she was not a special education student.
For help understanding 504 plans and IEP's please click HERE. To sum it up, a 504 plan is a plan written to ensure accommodations are provided for ALL disabilities to ensure the student has the "least restrictive environment" for learning. These can include anything from a ramp for a wheelchair, a nut free table/classroom to providing an Aide. An IEP is only needed when a child meets the requirements for "Special Education". It will include very specific educational goals and accommodations such as special education classes, devices, programs and even physical accommodations.
The bottom line is: 504 plan is to ensure accommodations are met for any type of physical disability. An IEP is for special education students only. IF the special education student also has physical disabilities, accommodations will be written into the IEP. The IEP will over-ride the need for a 504 plan. Only ONE type of plan is needed and this depends upon your specific needs and district guidelines.
Laws vary GREATLY from state to state and even from county to county. Here is a great link to State guidelines for School Health Services in EVERY state. Educate yourself on what your child is entitled to receive at school!
Her is a link to a WONDERFUL, easy to understand document from the USDA. It clearly describes the guidelines for Accommodating Children with Special Dietary Needs in the School Nutrition Programs. You should print this and bring it to school meetings! It provides ideas on how to make accommodations, how to find funding for the accommodations and what should and should not be provided by the school. Thanks Tina for passing this along!
Were there problems with compliance from the student or teachers?
There was never any compliance issues from the student at school. She tolerated the diet very well and did not try to cheat in any way. Interestingly, it was the teachers who were a little more skeptical at first. For this particular student, she experienced seizures at night and while waking up. Since the teachers never saw any seizure activity, it was hard for them to understand the desperation of the family to control a problem which they could never see. It's not that they didn't believe she had epilepsy, but it was the first time any of them had ever heard of a dietary treatment for epilepsy. After some education from both the parent and the ketogenic diet team at her hospital, there were never problems with compliance.
For educational materials, Ask your keto center if they offer anything specifically geared towards school professionals. The Epilepsy Foundation has a good overview of the diet. Click HERE to view the information. I always recommend printing educational materials and to include them with Dr.'s orders. 504 plans and IEP's.
Here is a child friendly overview of starting the ketogenic diet from Matthew's Friends. This breaks down starting the diet in very simple and easy to understand terms.
Also from Matthew's Friends (Although Matthew's Friends in based in the UK, the information is still applicable to the US!)
Overview of the diet
Managing the Diet in School
What are the steps to a smooth, happy school year?
During the summer, before the start of school:
Schedule an appointment with your child's doctor. Bring the school forms with you to be completed by the doctor. Make sure prescriptions are written correctly!
Gather all of your educational materials and medical documentation needed to support your requests for accommodations in school.
Make sure daily and emergency medication prescriptions are filled and properly labeled in their original containers. Some insurance companies will grant a "vacation request" and refill a prescription earlier than usual. This is a good way to make sure there is adequate medication at home & school.
To prepare for 504 or IEP meetings:
Know what your child is entitled to receive in school. The more you educate yourself on school law and policy, the more smoothly your meetings will go. Contact a state education advocate before the start of the school year if you have questions.
Here is a link to the U.S. Department of Education, Disability Discrimination page.
Make a list of accommodations, large and small that you want to be included in your child's plan. Imagine what your child will be doing through on a daily basis at school. Think about things like supervision in the bathroom, help opening containers at lunch, supervision while eating, notice of parties or food based lessons well in advance, and possibly even notice of lessons where contact with topical ingredients (play dough, rice, oatmeal, glue, ect..) may need to be considered.
By the FIRST day of school:
Return Emergency contact cards to the health office!
Make sure all medication is in the health office WITH Dr.'s orders.
Make sure your seizure care plan is written the way you want it. Specify EXACTLY when to give emergency medications and when to call 911. It may be your schools policy to call 911 after administering emergency medications. If you are able to meet the ambulance at school before they leave, you may be able to decline going to the hospital. If they leave before you get there, the school may have to follow certain rules that require the child be transported to the ER.
Most importantly, the school nurse or aide is the person who is responsible for taking care of your child's medical needs while they are at school. It is important to build and foster a relationship with this person based on FACTS, education, patience and understanding. It is important to do your part first! Gather all of your required paperwork and fill it out properly. Be patient and well prepared when you are first describing the specific requirements of the ketogenic diet. It may take time for the school team to learn about the diet and figure out how to incorporate it into a 504 plan or IEP in a way that works for everyone. Yelling and threatening a school team usually leads to more frustrations and resistance!
Keep in mind that everyone already has their eyes set on the SAME GOAL: to educate your child! It can be complicated in the beginning of the year, I have experienced accommodations that I thought were NOT what I wanted or asked for. After giving them time, I saw that the educators really do know what they are doing and make decisions based on years of experience and success.