University of Florida



What To Do If…Table of Contents:SicknessRunny nose due to cold……………...……………………………………………1Cough or Sore Throat…………….……………………………………………….2Dehydration.………………………………………………………………………3Symptomatic Hypoglycemia ...…………...………………………………………3Fever..………………………………………………………………………….….4Excessive Symptomatic Ketosis..………....…………………………….…...……5Menstrual Cramps.…………………….………………………………………......6Vomiting due to Sickness..……………………………………………..…………6 Vomiting from Meals……………….………....…………………………….……7Diarrhea……………………...……………………………………………………7Constipation………....…….………………………………………………………8Nausea……………………………………………………………………………..9Reflux………………………………………………………………………….…10Allergies………………………………………………………………………….11PrescriptionsRan out of Supplements, Vitamins, or Laxatives………………………………..13Ran out of Multistix 10 SG……………………………………………..………..13 Ran out of AED prescription…………………………………………………….13Changes in prescriptions or insurance……………………………………..…….13Ketogenic Meals and Other FoodsIf you want to try a new meal/new food item……………………………………14If you want to update/change the brands of foods in your meals………………..14If there is a change in eating patterns: hungry, not wanting to eat, need a snack for school, not finishing entire meal, etc…………………………………………….14If your child wants to eat more or is hungry…………………………………..…14If your child wants to eat family favorite foods, holiday meals, or incorporate seasonal foods……………………………………………………………………14If you run out of a particular food or brand of food in a mealDecaffeinated Diet Soda……………………………………………..……..……14Sugar Free Liquids and Flavored Waters………………………………...………14Spices or seasonings…………………….…………………………………….…15Salt Allotment …………………….……………………………….………….…15Sweeteners…………………….………………………………………...…….…15Decaffeinated Tea and Coffee………………..……………………………….…15Lettuce…………………….………………………………………………..….…16Yellow Mustard…………….………………………………….…………..….…16Other IssuesChanges in seizure activity: increase in seizure activity or severity, new seizure type.….…………………………………………………………………………17If you want to update/change record keeping format………………………….17If you would like an update on how things are going/doctor visits/new height or weight……..………………………………………………………………....…17If you would like to update your primary care pediatrician or neurologist about recent lab tests or Ketogenic Therapy assessments…………………..……..…17Scheduling issue with your Ketogenic Therapy visits or information on next appointment………………….……………………………………...……….…17Upcoming surgeries and needing to coordinate with other center…………..…17Abnormal Multistix Reading…………………….……..……………..…….…17School Records…………………….…………………………….………….…18Nursing Care…………………….……...………………………………..….…18Surgery…………………….……………………..………………………….…18How is the UF Ketogenic Therapy Research Program different from other programs? …………………….……………………………….…………….…18Multistix …………………………………………………….……..…….….…19Weighing foods…………………………………………...................................19Hiding Fats……………………………………..................................................19Adding flavor…………………..........................................................................19Appearance ……………………...………………………………………….…19Convenience and Storage …………………………………………….……..…20Vacations …………………….……….…………………………………….….20Common Ketogenic Therapy QuestionsDoes the ketogenic diet cause adverse effects?..................................................21If the ingredient label says 0 carbohydrates or 0 sugars, can we use it “freely”? (For example: kool-aid, mustard, and other hidden carbohydrates)………...…21How long does my child need to stay on the diet?.............................................22Do I have to restrict fluids on KT?.....................................................................22Restricting Calories…………………………………………………………….22Keto Kool-AidKeto Kool-Aid Instructions…………………………………………...………..24SicknessRunny nose due to coldWhat to do: Consult with your primary care pediatrician before administering a Keto-Friendly medication.The U.S. Food and Drug Administration recommend that over-the-counter cough and cold medications not be given to infants and children under two years old because of the risk of life-threatening side effects. Studies have shown cough and cold products are ineffective in treating symptoms of children under six years old, and may pose serious risks. The American Academy of Pediatrics (AAP) supports this recommendation and urges parents to seek safer ways to soothe infants and young children suffering from colds and coughs.Many cold medicines contain acetaminophen or ibuprofen. Always check the ingredients, especially if you're giving your child more than one medicine at the same time. If you're not careful, you could give your child too much of a certain kind of medicine, and it could lead to an overdose. Ibuprofen should only be given to children older than 6 months. Never give it to a child who is dehydrated or vomiting.Keep in mind that infant drops are stronger (more concentrated) than syrup for toddlers. Some parents make the mistake of giving higher doses of infant drops to a toddler, thinking the drops are not as strong. Be sure the type you give your child is appropriate for his weight and age.Decongestant (nose drops) can help make breathing easier. However, they should never be given to an infant because too much of the medicine can be absorbed through the nose. Also, the more they are used, the less they work, and symptoms can return or even get worse. If your older child cannot eat or sleep because of a stuffy nose, ask your pediatrician about decongestant nose drops. Don't give your child decongestant nose drops for more than 2 to 3 days unless your pediatrician says it's OK.Saline nose drops may help if your child is having trouble eating or sleeping because of a stuffy nose. A bulb syringe may be used to suck out nasal mucus after saline drops are used. Put 1 to 2 drops into a nostril at a time. Use the bulb syringe to suck out the drops and mucus. Using a bulb syringe can irritate your child's nose, so try not to use it too often. If your child is sleeping and eating well, there's no need to treat a stuffy nose.(American Academy of Pediatrics urges caution in the use of over-the-counter cough and cold medicines, Jan 17 2008. )(A Guide to Your Child's Medicines [Copyright ? 2005 American Academy of Pediatrics, Published online 10/2007] )If your runny nose is due to allergies, contact your primary care physician for prevention options. Keto-friendly products: Look on our website.Products that are not Keto-Friendly:It is advisable to choose a medication with zero carbohydrate. However, if one with zero carbohydrate is not available, use a medication with the lowest amount of carbohydrate. If you are going to use a medication for an extended period of time (more than one day), contact your KetoBuddy so they can create temporary meals that include the carbohydrate from the medication.Increased seizures are a potential side effect for many medications. Think about if your child has had increased seizures from any medications and let your KetoBuddy know about that medication.If there is a product you would like to use but it is not listed, before using it contact your KetoBuddy for the carbohydrate content and most updated information on this product.See our Drug Database, on our website, for other medicationsContact:Your primary care pediatrician for recommended dosage on one of the Keto-Friendly products.If you see an increase in seizure activity due to this illness or any medication, contact your neurologist.If you cannot get a hold of anybody, call your KetoBuddy and we will try to assist you in any way we can.Cough or Sore ThroatWhat to do: Give Keto Kool-Aid popsicles or ice chips. (See Keto Kool-Aid Recipe on page 24 Section 56 of this document)Consult with your primary care pediatrician before administering a Keto-Friendly medication or cough suppressant.The U.S. Food and Drug Administration recommend that over-the-counter cough and cold medications not be given to infants and children under two years old because of the risk of life-threatening side effects. Studies have shown cough and cold products are ineffective in treating symptoms of children under six years old, and may pose serious risks. The American Academy of Pediatrics (AAP) supports this recommendation and urges parents to seek safer ways to soothe infants and young children suffering from colds and coughs.Renee Jenkins, M.D., FAAP, president of the American Academy of Pediatrics recommended saline nose drops and suctioning bulbs to thin and clear mucus from a baby’s nose, and using a cool-mist humidifier. Chest physical therapy can also loosen mucus and may help infants and young children expel mucus. If a child under age 2 develops a fever, consult a pediatrician. (American Academy of Pediatrics urges caution in the use of over-the-counter cough and cold medicines, Jan 17 2008. )Keto-friendly cough suppressants: Look on our websiteProducts that are not Keto-Friendly:It is advisable to choose a medication with zero carbohydrate. However, if one with zero carbohydrate is not available, use a medication with the lowest amount of carbohydrate. If you are going to use a medication for an extended period of time (more than one day), contact your KetoBuddy so they can create temporary meals that include the carbohydrate from the medication.Increased seizures are a potential side effect for many medications. Think about if your child has had increased seizures from any medications.If there is a product you would like to use but it is not listed, before using it contact your KetoBuddy for the carbohydrate content and most updated information on this product.Contact:Your primary care pediatrician for recommended dosage on one of the Keto-Friendly products.If you see an increase in seizure activity due to the illness or any medications, contact your neurologist.If you cannot get a hold of anybody, call your KetoBuddy and we will try to assist you in any way we can.DehydrationDehydration can be monitored using the Multistix strips. Although some patients constantly have high specific gravity levels, 1.030, it does not necessarily mean that the child needs to go to the hospital. If you find that your child has a high specific gravity then you may want to give them more water. If your child’s specific gravity is above 1.030 AND they experience dehydration symptoms listed below, then you should consult your pediatrician.Go to page 19 Section 44 for more information on Multistix and testing your child’s specific gravity. Symptoms: if your child has no urine output, no tears, vomiting, lethargy, rapid breathing and a high pitched cry. Symptoms are different for every patient. What to do: Do not restrict fluids. Contact your pediatrician and go to the hospital. Your child may require an IV solution containing sodium and potassium. If your child’s blood glucose is below 40 mg/dL they may be given a bolus of glucose (1 gm/kg) to treat hypoglycemia.Keto-friendly products: Products that are not Keto-Friendly:If your child requires an IV, make sure to let the health care staff know all IV fluids should be carbohydrate free and not a glucose based IV.Contact:Your primary care pediatrician.If you see an increase in seizure activity, contact your neurologist.If you cannot get a hold of anybody, call your KetoBuddy and we will try to assist you in any way we can.Symptomatic Hypoglycemia (a clinical syndrome that results from low blood sugar)Over the past 10 years, our Ketogenic Therapy program has not seen a child experience symptomatic hypoglycemia. However, if your child experiences the symptoms of hypoglycemia you should consult your pediatrician and contact your KetoBuddy before you administer any juice.Symptoms: if your child is unusually lethargic, nervous, sweating, intense hunger, trembling, weakness, palpitations, confusion, and drowsiness. Symptoms are different for every patient.What to do: Give your child one ounce of juice. If these symptoms persist 20 minutes later give a second dose of juice. If the second dose of juice does not seem to help call your doctor immediately or go to the ER.An IV containing dextrose may need to be administered. Excessive ketosis can be checked for by seeing if the ketostrip changes color to large ketones IMMEDIATELY. Do not treat excessive ketosis with dextrose unless abnormal. Contact:Your primary care pediatrician.If you see an increase in seizure activity, contact your neurologist.If you cannot get a hold of anybody, call your KetoBuddy and we will try to assist you in any way we can.FeverWhat to do: Give sugar free liquids like water, Fruit2O and Aquafina Flavor Splash (Strawberry Kiwi, Lemon, Peach Mango).Consult with your primary care pediatrician before using a fever reducing medication that is Keto-Friendly. Acetaminophen and ibuprofen (fever reducer or pain reliever) can help your child feel better if your child's head or body aches or he has a fever. They also can help relieve minor pain from bangs and bumps or soreness from a shot. You don't need to treat a mild fever if your child is playing, drinking fluids, and generally acting well.Acetaminophen and ibuprofen have few side effects and are quite safe if the right dose is given. They come in drops for infants, liquid (syrup or elixir) for toddlers, and chewable tablets for older children. Acetaminophen also comes in suppositories if your child is vomiting and cannot keep down medicine taken by mouth. Never give a child aspirin. Keep in mind that infant drops are stronger (more concentrated) than syrup for toddlers. Some parents make the mistake of giving higher doses of infant drops to a toddler, thinking the drops are not as strong. Be sure the type you give your child is appropriate for his weight and age. Ibuprofen tends to work better than acetaminophen in treating high fevers (103°F or higher). However, ibuprofen should only be given to children older than 6 months. Never give it to a child who is dehydrated or vomiting. If your child has a kidney disease, asthma, ulcers, or other chronic illness, ask your pediatrician if ibuprofen is safe for your child. Don't give your child ibuprofen or acetaminophen if he is taking any other pain reliever or fever reducer, unless your pediatrician says it's OK. (A Guide to Your Child's Medicines [Copyright ? 2005 American Academy of Pediatrics, Published online 10/2007] )Keto-friendly products: Look on our website.Products that are not Keto-Friendly:It is advisable to choose a medication with zero carbohydrate. However, if one with zero carbohydrate is not available, use a medication with the lowest amount of carbohydrate. If you are going to use a medication for an extended period of time (more than one day), contact your KetoBuddy so they can create temporary meals that include the carbohydrate from the medication.Increased seizures are a potential side effect for many medications. Think about if your child has had increased seizures from any medications.If there is a product you would like to use but it is not listed, before using it contact your KetoBuddy for the carbohydrate content and most updated information on this product.Contact:Your primary care pediatrician.If you see an increase in seizure activity, contact your neurologist.If you cannot get a hold of anybody, call your KetoBuddy and we will try to assist you in any way we can.Excessive Symptomatic KetosisOver the past 10 years our Ketogenic Therapy program has not seen symptomatic ketosis in any patients. This is a rare occurrence; however, if your child experiences the symptoms then you should consult your pediatrician and contact your KetoBuddy before you administer juice.Symptoms: If your child has no energy, unusual fatigue or vomiting, which may also be accompanied by rapid breathing, irritability, increased heart rate, or facial flushing. Symptoms are different for every patient. In addition to symptoms, check the ketones on the Multistix. If strip IMMEDIATELY becomes dark (greater than160), administer fluids then check ketones again using the Multistix. If the strip immediately becomes dark a second time and your child is presenting symptoms of excessive ketosis, follow the procedure in section c. (A high Specific Gravity could mean that your child is dehydrated and needs more fluids, which makes their urine more concentrated. Ketones would probably be high and may turn dark immediately if the urine is concentrated. It is important to determine if your child is dehydrated and might just need more fluids or if they are experiencing excessive symptomatic ketosis.)If you have questions whether your child may be experiencing excessive symptomatic ketosis, contact your primary care pediatrician or your neurologist before any treatment.Go to page 19 Section 36e of this document for more information on Multistix and testing your child’s ketones39.e.What to do: Give your child one ounce of juice. If these symptoms persist 20 minutes later give a second dose of juice.If the second dose of juice does not seem to help call your doctor immediately or go to the ER.An IV containing dextrose may need to be administered. Excessive ketosis can be checked for by seeing if the ketostrip changes color to large ketones immediately. Do not treat excessive ketosis with dextrose unless abnormal. Products that are not Keto-Friendly:If your child requires an IV, make sure to let the health care staff know all IV fluids should be carbohydrate free and not a glucose based IV.Contact:Your primary care pediatrician.If you see an increase in seizure activity, contact your neurologist. If you cannot get a hold of anybody, call your KetoBuddy and we will try to assist you in any way we can.Menstrual CrampsKeto-friendly products: Look on our website.Products that are not Keto-Friendly:It is advisable to choose a medication with zero carbohydrate. However, if one with zero carbohydrate is not available, use a medication with the lowest amount of carbohydrate. If you are going to use a medication for an extended period of time (more than one day), contact your KetoBuddy so they can create temporary meals that include the carbohydrate from the medication.Increased seizures are a potential side effect for many medications. Think about if your child has had increased seizures from any medications.If there is a product you would like to use but it is not listed, before using it contact your KetoBuddy for the carbohydrate content and most updated information on this product.Contact:Your primary care pediatrician for recommended dosage on one of the Keto-Friendly products.If you cannot get a hold of anybody, call your KetoBuddy and we will try to assist you in any way we can.Vomiting due to SicknessIf your child is sick and vomiting due to the sickness you can follow the steps below or call your KetoBuddy for help on administering the diet during this period.What to do: Give sugar free clear liquids like water, Fruit2O and Aquafina Flavor Splash (Strawberry Kiwi, Lemon, Peach Mango).Do not restrict fluids because chances of becoming dehydrated are increased.If vomiting continues for 24 hours, give ? strength Pedialyte or ? strength Gatorade.To create: combine ? parts Pedialyte or Gatorade with ? parts water.Do not administer drinks for more than 24 hours without notifying clinic staff. Some breakthrough seizure activity is possibleIf vomiting continues after 24 hours, resume Ketogenic Therapy with ? strength Ketogenic Eggnog (? parts Ketogenic Eggnog to ? parts water).If your child does not tolerate the ? strength Ketogenic Eggnog, try to continue administering the ? strength Ketogenic Eggnog for the next meal. If vomiting continues, contact your primary care pediatrician.If your child tolerates the ? strength Ketogenic Eggnog, increase the next meal to ? strength Ketogenic Eggnog (? Ketogenic Eggnog and ? water).If your child tolerates the ? strength Ketogenic Eggnog, increase the next meal to full Ketogenic Eggnog (no water added).If your child feels better while on the Ketogenic Eggnog, you can go back to regular menus.Contact:If you would like adjustments to the diet or help with the Ketogenic Eggnog, contact your KetoBuddy. If vomiting increases seizure activity, contact your neurologist. If vomiting is constant or all day long, contact your primary care pediatrician.If you cannot get a hold of anybody, call your KetoBuddy and we will try to assist you in any way we can.Vomiting from MealsIf you child vomits after eating a meal you can follow the steps below.What to do: Decrease water given during meal. Wait until half way between meals and give water. For example, if you give meals every 4 hours, give water 2 hours after first meal.Feed meal more slowly especially if tube fed.Contact KetoBuddy for possible meal adjustments such asDecreasing the volume of the mealIf vomiting is due to a particular food in the meal, contact your KetoBuddy for adjustments.Smaller, more frequent meals (for example: instead of 3 larger meals changing them to 5 smaller meals).Contact:If you would like adjustments to the diet or help with the Ketogenic Eggnog, contact your KetoBuddy. If vomiting increases seizure activity, contact your neurologist. If vomiting is constant or all day long, contact your primary care pediatrician.If you cannot get a hold of anybody, call your KetoBuddy and we will try to assist you in any way we can.Diarrhea If you observe abnormal diarrhea in your child then you should follow the steps below.What to do: Do not restrict fluids because chances of becoming dehydrated are increased.If your child has abnormal diarrhea and is already on a laxative, try to fine tune your child’s laxative use. Dosage amount depends on how effective it is for your child.If you give a laxative once a day,Try decreasing this amount in half Or try giving this amount every other day Before exceeding recommended pediatric dosage on label, contact your primary care pediatrician for recommended dosage.If diarrhea continues for 24 hours, give ? strength Pedialyte or ? strength Gatorade.To create: combine ? parts Pedialyte or Gatorade with ? parts water.Do not administer drinks for more than 24 hours without notifying clinic staff. Some breakthrough seizure activity is possibleIf diarrhea continues after 24 hours, resume Ketogenic Therapy with ? strength Ketogenic Eggnog (? parts Ketogenic Eggnog to ? parts water).If your child does not tolerate the ? strength Ketogenic Eggnog, try to continue administering the ? strength Ketogenic Eggnog for the next meal. If vomiting continues, contact your primary care pediatrician.If your child tolerates the ? strength Ketogenic Eggnog, increase the next meal to ? strength Ketogenic Eggnog (? Ketogenic Eggnog and ? water).If your child tolerates the ? strength Ketogenic Eggnog, increase the next meal to full Ketogenic Eggnog (no water added).If your child feels better while on the Ketogenic Eggnog, you can go back to regular menus.Keto-friendly products: Look on our website.Products that are not Keto-Friendly:It is advisable to choose a medication with zero carbohydrate. However, if one with zero carbohydrate is not available, use a medication with the lowest amount of carbohydrate. If you are going to use a medication for an extended period of time (more than one day), contact your KetoBuddy so they can create temporary meals that include the carbohydrate from the medication.Increased seizures are a potential side effect for many medications. Think about if your child has had increased seizures from any medications.If there is a product you would like to use but it is not listed, before using it contact your KetoBuddy for the carbohydrate content and most updated information on this product.Contact:If you need adjustments to diet or help with the Ketogenic Eggnog, contact your KetoBuddy. If diarrhea increases seizure activity, contact your neurologist. If diarrhea is constant or all day long, contact your primary care pediatrician for recommended dosage on one of the Keto-Friendly products.If you cannot get a hold of anybody, call your KetoBuddy and we will try to assist you in any way we can.ConstipationSymptoms of Constipation:Many days without normal bowel movements Hard stools that are difficult or painful to passAbdominal pain (stomachaches, cramping, nausea)Rectal bleeding from tears called fissuresSoiling Poor appetiteCranky behaviorConstipation and Your Child (Copyright ? 2005 American Academy of Pediatrics) published online 03/2007What to do: Try using meals that have more fiber containing foods such as green beans, broccoli, peas, artichoke, raspberries, apples or pears with skins, blackberries, strawberries, or bananas. Higher fiber foods (along with adequate fluid intake) help regulate the digestive tract.Try using these meals for a few days and see if constipation improves. If you do not have these foods in your meals, contact your KetoBuddy for more fiber containing meals.If stool is hard, try increasing water intake or increasing activity such as moving around or helping your child move his or her legs.If these recommendations do not help constipation, try to fine tune your child’s laxative use. Dosage amount depends on how effective it is for your child.If you give a laxative once a day,Try doubling this amount Or try giving this amount in two dosages.Or try giving the initial amount twice a day Before exceeding recommended pediatric dosage on label, contact your primary care pediatrician for recommended dosage.Keto-friendly products: Look on our websiteProducts that are not Keto-Friendly:It is advisable to choose a medication with zero carbohydrate. However, if one with zero carbohydrate is not available, use a medication with the lowest amount of carbohydrate. If you are going to use a medication for an extended period of time (more than one day), contact your KetoBuddy so they can create temporary meals that include the carbohydrate from the medication.Increased seizures are a potential side effect for many medications. Think about if your child has had increased seizures from any medications.If there is a product you would like to use but it is not listed, before using it contact your KetoBuddy for the carbohydrate content and most updated information on this product.Contact:Your primary care pediatrician for a recommended dosage on one of the Keto-Friendly products.If you see an increase in seizure activity, contact your neurologist.If you cannot get a hold of anybody, call your KetoBuddy and we will try to assist you in any way we can.NauseaWhat to do: There are several reasons why a child might be nauseated. If your child is nauseated try to determine what might be the cause of your child’s nausea. This is a list of possible causes of your child’s nausea.Volume of meal.Contact KetoBuddy to adjust meal.Vomiting from sickness.Contact your primary care pediatricianCertain food(s)A particular food(s) might make your child sick. Try to investigate what foods may contribute to nausea. Try not to give meals with this particular food and see how your child feels. If they feel better after eliminating the food, then this may be the cause of your child’s nausea. If they do not feel better, try eliminating another food. Contact your KetoBuddy if you would like any food adjustments to the meals.If nauseous from lying down immediately after eating, particularly tube fed children, elevate your child’s head or try keeping them upright for longer during and after meals. If the problem progresses, consult with your primary care pediatrician. Keto-friendly products: Look on our websiteProducts that are not Keto-Friendly:It is advisable to choose a medication with zero carbohydrate. However, if one with zero carbohydrate is not available, use a medication with the lowest amount of carbohydrate. If you are going to use a medication for an extended period of time (more than one day), contact your KetoBuddy so they can create temporary meals that include the carbohydrate from the medication.Increased seizures are a potential side effect for many medications. Think about if your child has had increased seizures from any medications.If there is a product you would like to use but it is not listed, before using it contact your KetoBuddy for the carbohydrate content and most updated information on this product.Contact:Your primary care pediatrician for a recommended dosage on one of the Keto-Friendly products.If you see an increase in seizure activity, contact your neurologistIf you cannot get a hold of anybody, call your KetoBuddy and we will try to assist you in any way we can.RefluxWhat to do: Limited pediatric evidence suggests that avoiding caffeine, chocolate, and spicy foods that provoke symptoms is beneficial.Pediatrics in Review. ? 2007 American Academy of PediatricsIf you do believe, your child’s reflux is caused by a particular food(s), try to investigate what foods may contribute to the reflux. Try not to give meals with this particular food and see how your child feels. If they feel better after eliminating the food, then this may be the cause of your child’s reflux. If they do not feel better, try eliminating another food. Contact your KetoBuddy if you would like any food adjustments to the meals.If reflux is caused from lying down immediately after eating, particularly tube fed children, elevate your child’s head during and after meals. If the problem progresses, consult with your primary care pediatrician. Keto-friendly products: Look on our website.Products that are not Keto-Friendly:It is advisable to choose a medication with zero carbohydrate. However, if one with zero carbohydrate is not available, use a medication with the lowest amount of carbohydrate. If you are going to use a medication for an extended period of time (more than one day), contact your KetoBuddy so they can create temporary meals that include the carbohydrate from the medication.Increased seizures are a potential side effect for many medications. Think about if your child has had increased seizures from any medications.If there is a product you would like to use but it is not listed, before using it contact your KetoBuddy for the carbohydrate content and most updated information on this product.Contact:Your primary care pediatrician for a recommended dosage on one of the Keto-Friendly products.If you cannot get a hold of anybody, call your KetoBuddy and we will try to assist you in any way we can.AllergiesMany children experience allergies from an exposure to a certain substance. Some allergies are easy to detect and others are subtle. In addition, some children have not been exposed to certain foods or substances yet so allergies might not be developed or manifested. Any allergy treatment should be consulted through your primary care pediatrician. Symptoms: (Symptoms are different for every child.)Recurrent red, itchy, dry, sometime scaly rashes in the creases of the skin, wrists, and ankles. Repeated or chronic cold-like symptoms - that last more than a week or two, or develop at about the same time every year. These could include a runny nose, nasal stuffiness, sneezing and throat clearing. Nose rubbing, sniffling, snorting, sneezing and itchy, runny eyes. Itching or tingling sensations in the mouth and throat. Itchiness is not usually a complaint with a cold, but it is the hallmark of an allergy problem. Coughing, wheezing, difficulty breathing, and other respiratory symptoms. Coughing may be an isolated symptom; increases at night or with exercise are suspicious for asthma. Repeated ear or sinus infections or persistent middle ear fluid associated with nasal symptoms Recurrent episodes of abdominal pain following ingestion of a particular food. “Allergy Tips.” Abstracted from the American Academy of Pediatrics Guide to Your Child's Allergies and Asthma. to do:Your child's allergy treatment should start with your pediatrician, who may refer you to a pediatric allergy specialist for additional evaluations and treatments.“Allergy Tips.” Abstracted from the American Academy of Pediatrics Guide to Your Child's Allergies and Asthma. dosage amounts on any Keto-Friendly medications or other forms of allergy therapy, consult your primary care pediatrician.Decongestant (nose drops) can help make breathing easier. However, they should never be given to an infant because too much of the medicine can be absorbed through the nose. Also, the more they are used, the less they work, and symptoms can return or even get worse. If your older child cannot eat or sleep because of a stuffy nose, ask your pediatrician about decongestant nose drops. Don't give your child decongestant nose drops for more than 2 to 3 days unless your pediatrician says it's OK.(American Academy of Pediatrics urges caution in the use of over-the-counter cough and cold medicines, Jan 17 2008. )Antihistamines can help your child feel better when he has a runny nose, itchy eyes, and sneezing due to allergies (but not colds). They also can help relieve itching from chickenpox or insect bites. They can even control hives or other allergic reactions. Antihistamines can make some children sleepy. Other children may become irritable, nervous, or restless. For that reason, don't give an antihistamine at bedtime unless you know your child will have no trouble sleeping.(American Academy of Pediatrics urges caution in the use of over-the-counter cough and cold medicines, Jan 17 2008. )Keto-friendly products: Look on our website.Products that are not Keto-Friendly:It is advisable to choose a medication with zero carbohydrate. However, if one with zero carbohydrate is not available, use a medication with the lowest amount of carbohydrate. If you are going to use a medication for an extended period of time (more than one day), contact your KetoBuddy so they can create temporary meals that include the carbohydrate from the medication.Increased seizures are a potential side effect for many medications. Think about if your child has had increased seizures from any medications.If there is a product you would like to use but it is not listed, before using it contact your KetoBuddy for the carbohydrate content and most updated information on this product.Contact:Your primary care pediatrician for a recommended dosage on one of the Keto-Friendly products.If you cannot get a hold of anybody, call your KetoBuddy and we will try to assist you in any way we can.PrescriptionsRan out of Supplements, Vitamins, or Laxatives Contact: If the physician is at Shands then the KetoBuddy can facilitate the process of getting the prescription.If physician is elsewhere, we can facilitate process by calling this doctor to send a prescription to the pharmacyRan out of Multistix 10 SG What to Do:Check with your insurance to see if Multistix are covered. Several stores including Target and pharmacies may carry Multistix. Multistix may also be purchased through online ordering.Search: Pulmo Lab: with free shipping your KetoBuddy for help or more information on finding a location to purchase your Multistix 10 SG. Ran out of AED prescriptionContact:Your neurologist.If no answer, call your KetoBuddy and we will try to assist you in any way we can.Changes in prescriptions or insuranceContact:Call your KetoBuddy and we will try to assist you in any way we can.Ketogenic Meals and Other FoodsIf you want to try a new meal/new food itemContact your KetoBuddyIf you want to update/change the brands of foods in your mealsContact your KetoBuddyIf there is a change in eating patterns: hungry, not wanting to eat, need a snack for school, not finishing entire meal, etc.Contact your KetoBuddyIf your child wants to eat more or is hungryContact your KetoBuddyIf your child wants to eat family favorite foods, holiday meals, or incorporate seasonal foodsBirthday cakeHoliday cookies or browniesMacaroni and cheeseSpaghettiMeatloaf and mashed potatoesTacosPizzaThanksgiving DinnerValentine’s Day snackContact your KetoBuddy, and we will be happy to create meals to your liking.If you run out of a particular food or brand of food in a mealContact your KetoBuddy immediately, and we can create a substitute meal until you are able to obtain the particular brand of food. Decaffeinated Diet SodaMost diet sodas made with Splenda or Nutra-Sweet are okay since they are made with a liquid sweetener that does not contain carbohydrate. However, check with your KetoBuddy before administering diet soda made with Splenda or Nutra-Sweet. If you know that your child reacts in a negative way to either Splenda or Nutra-Sweet, these products should not be used.It is okay to give diet soda daily as a treat in small amounts, but if you are giving it to your child in large volumes each day then consider diluting the diet soda with seltzer water.We suggest giving this drink in colored cup to disguise diluted colorWe suggest giving this drink in special cup as a treatKeto-Friendly Diet SodasA & W Diet Cream Soda (Sweeteners: aspartame)Publix Diet Orange Soda (Sweeteners: Splenda)Diet Rite Soda (Sweeteners: Splenda)If you are unsure if the diet soda is Keto-Friendly, contact your KetoBuddy and we will try to assist in any way we can.Sugar Free Liquids and Flavored WatersKeto-Friendly sugar free liquids and flavored waters are okay to drink freely.Keto-Friendly products:Fruit2O Aquafina Flavor Splash (Strawberry Kiwi, Lemon, Peach Mango)For other flavored waters, we would need to look into these drinks before you can give them to your child.If you would like to try another flavored water, contact your KetoBuddy and we will try to assist in any way we can. Spices or seasoningsSpices are a great way to add variety to any meal. However, spices do contain carbohydrate, because many come from plants. If you would like to add spices or seasonings to any meal, contact your KetoBuddy and we will try to assist in any way we can.Salt Allotment Salt allotment is patient specificSupplementation is given to patients because of low lab values of sodium or chlorideIf high lab values, abnormal renal issues or hypertension, your physician may consider restricting salt. You can add salt to taste in meals, because it has no carbohydrate except for patients who are restricted by a doctor’s order.SweetenersMost sweeteners (like Splenda in powder form) do contain carbohydrate fillers. These are allowed but must be calculated into your child’s meals. However Commercial products with sweeteners often do not have this issue because the manufacturer uses the product without fillers.If we know the nutritional information for other sweeteners we can calculate them into a meal. However, if we are not able to obtain this information, we do not recommend them.Da Vinci sugar free syrups and Torani sugar free syrups are fine to use freely.Decaffeinated Tea and CoffeeWe do not recommend drinking tea or coffee freely, because both come from plants, which contain carbohydrates. There are several options on how to include these drinks into your child’s meals. If parents would like to give tea or coffee at least once a day, we suggest giving it with a certain meal. For example, if your child likes tea or coffee with breakfast, it can be calculated your child’s breakfast meals. Tea or coffee can be calculated into any of your meals. If the calculated coffee or tea appears to be a small quantity, we suggest diluting the calculated coffee or tea with water to add volume.We suggest giving tea/coffee in colored cup to not notice diluted colorContact your KetoBuddy for updates to your meals to include coffee or tea.If you want to incorporate a certain tea/coffee, call your KetoBuddy and we will try to assist you in any way we can.LettuceLettuce does contain carbohydrate, and therefore ALWAYS needs to be calculated into your child’s meals. If you are interested in adding lettuce to your child’s meals, contact your KetoBuddy and we will be happy to add lettuce to your child’s meals.Yellow MustardYellow Mustard does contain carbohydrate, and therefore always needs to be calculated into your child’s meals. Even a small amount of yellow mustard contributes to the total carbohydrate allowed by your child’s diet prescription.If you are interested in adding yellow mustard to your child’s meals, contact your KetoBuddy and we will be happy to add yellow mustard to your child’s meals. Other IssuesChanges in seizure activity: increase in seizure activity or severity, new seizure typeContact your neurologist. If no answer, call your KetoBuddy and we will try to assist in any way we canIf you want to update/change record keeping formatContact your KetoBuddyIf you would like an update on how things are going/doctor visits/new height or weightContact your KetoBuddyIf you would like to update your primary care pediatrician or neurologist about recent lab tests or Ketogenic Therapy assessmentsContact your KetoBuddy. We will make sure we have a release form on file to send these to your physician.Scheduling issues with your Ketogenic Therapy visits or information on next appointmentContact your KetoBuddyUpcoming surgeries and needing to coordinate with other centersContact your KetoBuddyAbnormal Multistix ReadingIf you see an abnormal multistix reading, repeat the reading with a new strip. There are several causes for an abnormal reading- storage in a moist environment, dirt particles on the strip, If you receive the same reading, call your KetoBuddy and we will try to assist you in any way we can. HintsCut in halfUse only a few at a time by storing zip lock pack to preserve stripSpecific Gravity Measures hydrationHigher values means you might not be adequately hydrated and lower values means adequately hydrated.A specific gravity reading of 1.030 does not necessarily mean your child is dehydrated, but they may require a little extra water. See Dehydration for more information.KetonesMeasures levels of ketosisKetone values are patient specific. Generally, lower ketones means a lower state of ketosis and higher ketones means a higher state of ketosis. It is ideal to have ketone values between 80-160. However, it is important that your ketone values remain constant.Other Multistix readingsIn the past 15 years of our Ketogenic Program, if a high value was seen it was usually due to a problem with the multistix. Abnormal multistix readings are not common things we see. If you see an abnormal reading multiple times, contact your KetoBuddy, and we will assist you in any way we can.Leukocytes: Readings are used as a possible indication of disease of the kidney and urinary tract. Protein: Readings are used as a possible indication of urinary or kidney disorders.Blood: Rreadings are used as a possible indication of urinary, kidney, or bleeding disorders.Nitrite: Readings are used as a possible indication for certain bacteria in urine.Urobilinogen: Readings are used as a possible indication for further evaluation for blood or liver disease. pH: Readings are used to measure pH in urine. Normal pH of urine can range from 4.6 to 8.0.Bilirubin: Readings can be used as a possible indication of the earliest phases of liver disease.Glucose: Readings are used as a possible indication of abnormal kidney function.(Bayer Package Instructions for Multistix 10 SG, Multistix 9, Mulstix 9 SG, Multistix 8 SG, Multistix 7, N-Multistix SG, N-Multistix, Multistix SG, Bili-Labstix Reagen Strips: )School RecordsIf you need school to take records or administer the diet at school, contact your KetoBoddy for a school letter and more information.Nursing CareIf you need your nursing care to take records or administer the diet, contact your KetoBuddy for a prescription.SurgeryIf your child is going to be having surgery, make sure to inform your child’s physicians about the Ketogenic Therapy.If doctor’s request certain nutrients for surgical procedure, we can adjust diet to include these nutrientsWhat to doGive surgery protocol document to physician. Contact your KetoBuddy for a copy.How is the UF Ketogenic Therapy Research Program different from other programs?KetoBuddy Support System Data collection used for tailoring the therapy and close patient monitoring for the needs of your child. The Research Program requires more daily records from the caregiver’s part; however, they are utilized to monitor the progress and personalize your child’s therapy. More frequent monitoring of your child’s overall health. (more labs, more measurements, metabolic cart)Patient visits are at the University of Florida Shands Hospital General Clinic Research Center.All research procedures are done free of charge. Inpatient visits at the GCRC are free of charge. Hints and TricksMultistixTo preserve quality of test strip: Consider taking only a few Multistix out at a time, and placing the rest of the Multistix in a dry locationPlace entire bottle in a Ziploc bag in order to remove moisture from contacting the stripCut Multistix in half to last longer so you have twice the amount of Multistix.Check to be sure your Multistix have not expired.Weighing foodsEvery food should be weighed according to the meal equivalent specifications. It will differ for each meal you prepare.For example, some meals are calculated as raw beef and other meals are calculated with cooked beef. Please be aware of the way the foods are described in your meal instructions. If you would like a specific brand of food or specific item in your meals, contact your KetoBuddy.Foods should be used according to the specific brand in your meal instructions.For example, Kraft Real Mayonnaise contains different ingredients than Hellman’s Mayonnaise and therefore provides different percentages of protein, fat, and carbohydrate. For this reason, each food used should be exactly as described in the meal instructions.If you would like a specific brand of food in your meals, contact your KetoBuddy.Hiding FatsOil can be mixed in with: CreamEggsPeanut butterMayonnaiseDressingsAnd many more…And can also be used to cook many foodsVegetables and meats Adding flavorAdd extracts to whipping creams or cream shakes.Flavorings you may want to try: vanilla, peppermint, or diet cream soda. All flavorings must be calculated into the meal equivalent before use. Contact your KetoBuddy if you would like a flavoring to your child’s meals. AppearancePlating Food can be placed on a smaller plate and spread out to appear larger.You can wrap almost anything in lettuce! This turns the food into a fun hand-held taco. But remember to calculate the lettuce in the meal equivalentHand-held foods Be creative! Find ways to turn the foods into finger foods by cutting them up into bite sizes or by adding toothpicks.Color Food coloring can make meals more appealingShapesFood can be cut into fun shapes. Try to make your child’s meals resemble family meals by time served and type of foods.Convenience and StorageThere are many ways families can make the diet easier. Save small containers for convenient meal storage.Many parents prepare meals in advance every night after dinner for the following day and keep them in plastic containers in the refrigerator. Some parents also prepare meals a week in advance and freeze them. Stock up your house with food supplies before your child comes home from the hospital. If you see any recipe ideas your child might like, tell your KetoBuddy and he or she will create it specific to your child’s diet prescription. VacationsWhen planning for a family vacation, caregivers should make a checklist of items needed to make ketogenic meals. Your KetoBuddy can help! Some tipsMake some meals ahead of time and keep them refrigerated to save time.Bring foods that are not easily accessible during your travel such as sweetener, flavoring extracts, and tube feeding constituents.Ask your neurologist for the name of a neurologist near your vacationing location in case of emergency.Plan meals easier to feed in the car for long trips. Common Ketogenic Therapy MisconceptionsDoes the ketogenic diet cause adverse effects?There are potential side effects of the Ketogenic Therapy just like any other therapy. This is why we monitor each patient very closely for any development so as to catch anything at an early stage. Many adverse effects can be controlled.“Like all medical therapies, the KD has potential adverse effects. Overall, the risk of serious adverse events is low, and the KD does not need to be discontinued for these reasons for most children.” (Optimal clinical management of children receiving the ketogenic diet- Recommendations of the International Ketogenic Diet Study Group. Epilepsia, 50(2):304–317, 2009)GI disturbances “Gastrointestinal symptoms including vomiting, constipation, diarrhea, and abdominal pain occur in 12%–50% of children (Kang et al., 2004).”(Optimal clinical management of children receiving the ketogenic diet- Recommendations of the International Ketogenic Diet Study Group. Epilepsia, 50(2):304–317, 2009)Growth Growth retardation is prevalent in epileptic children and more prevalent in those with intractable epilepsy. “Several factors could explain this: frequent seizures and long post-ictal periods may lead to reduced times of alertness and may lead to decreases in total energy intake.” Antiepileptic drugs can affect weight of patient and this depends on the specific drug. Patients can also suffer from appetite loss from antiepileptic drugs, which increases malnutrition.(Malnutrition and epilepsy: A two-way relationship. Clinical Nutrition 28 (2009) 219–225If the ingredient label says 0 carbohydrates or 0 sugars, can we use it “freely”? (For example: kool-aid, mustard, and other hidden carbohydrates)Not all foods are made equal, some foods contain small amounts of carbohydrates that are not significant enough to put on the nutrition facts label, but they are still present in foods. Some foods labeled “Sugar Free” also contain “hidden carbohydrates.” Therefore, you must check the ingredient label to find these “hidden carbohydrates.” Go to page 24 of this document for a list of some ingredients that are considered “hidden carbohydrates.” These may be found in Kool-Aid and other foods. These ingredients contribute to carbohydrates: For Keto Kool-Aid: Although we recommend certain flavors, it is important to look at the specific Kool-Aid package you purchase. Even though the packets may have the same title such as Lemon-Line or Strawberry, they may contain different ingredients because it may be packaged at different manufacturing locations. How long does my child need to stay on the diet? (common misconception of 1-2 years is enough) – many studies typically track patients on the diet for 1-2 years, however there is no evidence to say that there is a set amount of time one should be on the diet. “The timing and actual method of KD discontinuation are often individualized based on patient response to the diet. Most parents are counseled to continue the KD, even if apparently ineffective, for at least 3 months (Freeman et al., 2006). The consensus group agreed that the KD should be used for at least a mean of 3.5 months (sd 2.2 months) before considering discontinuation.At each clinic visit, but definitely according to the consensus group after a median of 2 years (range 0.5-4 years), a thorough reevaluation of the KD risks and benefits should be considered. Parents should be allowed a primary decision-making role in deciding how long to maintain the KD for their child unless there are clear medical concerns. …longer diet durations are necessary for GLUT-1 and PDHD [pyruvate dehydrogenase disorder] and may be perfectly appropriate based on individual responses for intractable epilepsy.”(Optimal clinical management of children receiving the ketogenic diet- Recommendations of the International Ketogenic Diet Study Group. Epilepsia, 50(2):304–317, 2009)Do I have to restrict fluids on KT?“Fluid restriction to 90% is also based on historical use of the diet rather than on scientific evidence. Many centers no longer fluid restrict children on the KD.Liberalization of fluid should be considered for patients at increased risk for dehydration, such as those with increased activity, febrile illness, or exposure to warm temperatures, as well as infants. Low carbohydrates have a diuretic effect…It is helpful for families to be counseled on appropriate fluid volume as a daily goal. If appropriate fluid intake cannot be met, a urine specific gravity within normal limits (<1.015) is a good measure of adequate hydration.”(Optimal clinical management of children receiving the ketogenic diet- Recommendations of the International Ketogenic Diet Study Group. Epilepsia, 50(2):304–317, 2009)Restricting CaloriesCalories are sometimes restricted in certain Ketogenic programs. “However, this has never been shown in patients to be beneficial (Vaisleib et al., 2004). Additionally, an underweight child should be started at calories based on current weight then increased gradually over time.” At the Shands Ketogenic Therapy Program, we do not restrict calories for adequate growth and development is needed.(Optimal clinical management of children receiving the ketogenic diet- Recommendations of the International Ketogenic Diet Study Group. Epilepsia, 50(2):304–317, 2009)(Vaisleib II, Buchhalter JR, Zupanc ML. (2004) Ketogenic diet: outpatientinitiation, without fluid, or caloric restrictions. Pediatr Neurol31:198–202.)Keto Kool-AidKeto Kool-Aid is a drink that gives regular water a nice color and flavor that your child is sure to enjoy! Below are instructions and information about Keto Kool-Aid to help you prepare this tasty beverage for your child:Instructions: Instead of using the instructions on the Kool-Aid package, follow these instructions:Dilute the Kool-Aid with at least twice as much water as indicated by the instructions. For example, if the instructions say to add water to make two quarts then you would add four quarts of water to one package. Information: Not all foods including Kool-Aid are made equal, some foods contain small amounts of carbohydrates that are not significant enough to put on the nutrition facts label, but they are still present in foods. Some foods labeled “Sugar Free” also contain “hidden carbohydrates.” Therefore, you must check the ingredient label to find these “hidden carbohydrates.” We have found that many flavors of Kool-Aid and other types of foods and medications contain these “hidden carbohydrates.” Some of these ingredients are considered “hidden carbohydrates” and may be found in Kool-Aid and other foods. These ingredients contribute to carbohydrates:Ingredients that contain CarbohydrateIngredients that DO NOT contain CarbohydrateAcesulfame Potassium (Sweetener)Aspartame (Equal)Corn starchDextroseEthel alcoholFructoseGlycerinLactitolLactoseLactose monhydrateMaltodextrinMannitolModified cornstarchNeotame MonoglyceridePolydextrosePolyethlene glycolPotassium sorbatePregelatinized StarchPropylene glycolSaccharin (Sweet N’ Low)Sodium starch glycolateSorbitolStarchStarch glycolateSteviaSucroseXylitolAnything with “cellulose”Ascorbic acidCitric acidGelatinMagnesium stearateSodium saccharinStearic acid**This is not a complete list of carbohydrate ingredients. If you are unsure of an ingredient that is not listed above, contact your KetoBuddy for questions.Use these Kool-Aids.They contain ingredients that do not contribute to carbohydrates**Although we recommend these flavors, it is important to look at the specific Kool-Aid package you purchase. Even though the packets may have the same title such as Lemon-Line or Strawberry, they may contain different ingredients because it may be packaged at different manufacturing locations. 491109083820308229085090125349086995-57531083820 463105532835853189605332676513722353326765-3378203326765Do not use these Kool-AidsThey have ingredients that contribute to carbohydrates (malodextrin and modified cornstarch). See the ingredient circled in red.11474451236980 ................
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