When talking to a child with RKD, it’s important to approach the conversation with sensitivity, openness, and age-appropriate language. Here are some tips for communicating with your child
1) Find a quiet and comfortable environment where you can have a conversation without distractions. This helps your child feel secure and allows them to focus on the discussion
2) Use simple age appropriate language. Explain things in a way that they can understand. Avoid using medical terms unless your child is familiar with those terms.
3) Be truthful about your child’s condition and validate that what they are experiencing is difficult. Avoid providing false reassurances, but emphasize that you and the medical team are there to support and help them.
4) Encourage your child to ask questions and express their feelings. Be patient and ready to answer their questions honestly. This helps build trust and understanding
5) Depending on your child’s age, visual aids such as experiments, drawings, or age-appropriate books can help explain their condition and its treatment.
6) When appropriate, involve your child in discussions about their treatment plan or any decisions that affect them. This can help them feel more in control and empowered.
7) Let the child know that you are there to support them throughout their journey. Reassure them that they are not alone in facing their challenges.
8) Acknowledge and validate the child’s emotions. It’s normal for them to feel a range of emotions, including fear, sadness, or frustration. Encourage them to express their feelings and offer emotional support.
9) While it’s important to be honest, maintain a positive and hopeful tone. Focus on the aspects of their treatment and care that can improve their well-being.
10) Regularly check in with the child to see how they are feeling and if they have any new questions or concerns. This ongoing communication helps build trust and keeps the lines of communication open.
Remember that each child is unique, so it’s important to be flexible and adapt your approach based on their individual needs, personality, and developmental stage. Building a trusting and open relationship is crucial for the child’s well-being and coping with the challenges of living with a rare disease.
When you have a child with Nephrotic Syndrome, there are many considerations when it comes to school. Many children with Nephrotic Syndrome don’t qualify for an Individualized Education Plan (IEP), but could benefit from a few accommodations in school and a 504 Health Plan may be able to help. Part of a civil rights law, a 504 plan is developed at the school level to customize a student’s school and learning environment to meet their specific needs.
A 504 Plan can be a good tool that helps your child receive the instruction they need inside the classroom, while protecting their health at the same time.
What is a 504 Plan?
A 504 Plan refers to Section 504 of the Rehabilitation Act and the Americans with Disabilities Act. This specifies that no one with a disability can be excluded from participating in federally funded programs or activities, including elementary, secondary, or post-secondary schooling.
The goal of a 504 Plan is to remove barriers and allow students with health concerns to participate effectively in public education or in schools that receive public funding. This plan can be helpful for students with minor or severe health concerns. It removes barriers by listing accommodations designed for a student to help them learn in a classroom environment and participate in school just as they would if they didn’t have a disability. These accommodations are specific to each student and each 54 Plan is uniquely suited to the student’s particular needs.
Children who benefit from a 504 Plan are those who are able to learn at a typical level if they are provided appropriate accommodations. Thus, a child with intellectual disabilities will likely need an IEP, while a child with Nephrotic Syndrome would be better served by a 504 Plan.
According to the US Department of Education, a child with a disability is defined as a child who:
Has a physical or mental impairment that substantially limits a major life activity;
Has a record of such an impairment;
Is regarded as having such an impairment.”
Eligibility for a 504 Plan does not define specific medical conditions. Instead, it is intentionally left as a broad statement of possible physical and mental impairments so that each school can determine eligibility on an individual basis.
“Major life activities” include a variety of functions required in daily life, from seeing or hearing to concentrating, communicating, and learning. The Department of Education also includes “major bodily functions” as part of life activities, so children with respiratory, bowel or bladder, immune, and other physical conditions are protected under the law.
How to Establish a 504 Plan
Sometimes the 504 Plan is proposed by the school for a child that they see could use a little extra help. Parents can also request a 504 Plan if they see a need or if a diagnosis or life event occurs that may impact their child’s safety at school or their learning abilities.
School districts will often have a coordinator who handles both IEP and 504 plans. It’s also common for a team to be established to develop the plan. This may include the student’s teacher, principal, and counselor. Parents should also take part in creating a 504 Plan and attend all meetings.
A school should develop a written and signed 504 Plan to ensure all responsible parties are informed and protected. It’s important that all teachers at the school have a copy and understand the accommodations set forth in the 504 Plan.
Within the 504 Plan, the parent and the school will list specific accommodations or modifications that will make it possible for the student to succeed in school. Unlike an IEP, a 504 will not include academic goals, benchmarks, or measurements.
Accommodations may include items such as: – Requiring teachers and aides to receive training about your child’s condition (educational pamphlet about Nephrotic Syndrome) – Supervision regarding dietary and fluid restrictions/requirements – Keeping the classroom free of as many germs as possible by wiping down surfaces, providing access to non-shared school supplies, allowing the child to sit away from children who are coughing, etc. (sample letter to send home to parents) – Providing a child with extra time or modified testing and homework – Protection against missed school for illness and or doctor appointments – Ability to visit the school nurse for medications and/or monitoring – Home instruction if your child misses too much school
504 Plan vs. Individualized Education Plan
There is some confusion regarding the similarities between a 504 Plan and an Individualized Education Plan (IEP). While both are intended to help children with disabilities learn with adaptations to meet their needs, they take a different approach.
A 504 Plan is intended for children with a wide range of disabilities who are, nevertheless, able to participate and succeed in a general education classroom. An IEP, on the other hand, is intended for children who are not able to learn at the same pace as their peers and who require special education services. Some children with Nephrotic Syndrome do qualify for an IEP.
If you feel like your child could benefit from a written 504 Plan or an IEP, contact your school and set up a meeting!
Kidney Model or Image with picture of Filtering Units
Age appropriate scissors
Explanation
The kidney’s function is to clean our blood. The kidneys have millions of filtering units called glomeruli that act kind of like a coffee filter. The kidney filters gather waste products and eliminate them in the form of urine but do not allow the good products like blood, immunoglobulins and protein (albumin) to pass through. Instead they send them back into the bloodstream. (Show diagram or model) The purpose of this experiment is to give patients a visual demonstration of how their kidney’s are not functioning properly.
Part 1: Normal Kidney
Have a child take beads and put them into the jug of water (blood). The beads represent the good protein (albumin).
Then take a normal coffee filter and place it over a clear container.
Place a couple drops of yellow food coloring onto the center of the filter paper.
Pour the water and beads over the filter.
Ask: What do you see?
Explanation: The water should turn yellow, as the toxins are removed in the urine, but there should be no good products like protein leaking out. Once the kidney filters out the toxins, it returns the good products back into the blood where they are needed.
Part 2: Kidney affected by Nephrotic Syndrome
Ask: In NS the filters (glomeruli) lose their shape. Now when blood passes through what happens?
Take another coffee filter and get them to cut holes (big enough for the beads to pass through).
Place the filter over a clear container.
Place a couple drops of yellow food coloring onto the center of the filter paper.
Pour the water and beads over the filter.
Ask: What happened? Did the filter with holes work properly?
Explanation: This is what happens in the kidneys of a person when they have NS. The protein leaks from the blood into the urine because the kidneys cannot filter it properly. When we don’t have enough protein in our blood we become swollen, and the protein can cause foamy urine.
Phosphorus is a mineral that helps build strong, healthy bones and keeps muscles working correctly. When food containing phosphorus is consumed and digested, the small intestines absorb it and it becomes stored in the bones. Kidney disease may cause the kidneys t be unable to remove excess phosphorus from the blood. High phosphorus levels cause bones to weaken and lead to dangerous calcium deposits in blood vessels, eyes, lungs and heart. Levels of phosphorus in the blood should be monitored by a healthcare provider. The normal level of phosphorus should range form 2.4 to 4.1. Low phosphorus diets limit total consumption to 800-1,000 mg daily. Check with your physician to receive the daily limit that is right for you.
Hyperphosphatemia is the medical term that describes an electrolyte disturbance in which there is an abnormally-elevated level of phosphate in the blood.
Steps you can take to keep phosphorus at safe levels:
Know what foods are lower in phosphorus.
Pay close attention to serving size.
Eat smaller portions of foods that are high in protein.
Eat fresh fruits and vegetables.
Ask you physician about using phosphate binders at meal time.
Avoid prepackaged foods that contain added phosphorus. Look for phosphorus, or for words with PHOS, on ingredient labels, the the one below.
Lower Phosphorus Foods
Fresh Fruits
All fruits are low in phosphorus
Fresh Vegetables
All vegetables are low in phosphorus
Carbohydrates
Breads (white),
Crackers (not wheat)
Pasta
Popcorn
Corn and Rice cereal
Rice (white)
Meat
Fresh meat (check for
added PHOS)
Hot Dog
Sausage
Egg
Beverages
Fruit Juices
Light colored soda
Tea
Coffee (no dairy)
Home-brewed Iced Tea
Examples of Foods That May Have Added Phosphorus:
Frozen uncooked meats
and poultry
Frozen baked goods
Chicken nuggets
Cereals, cereal bars
Baking mixes
Instant puddings
Sauces
One Serving =
Fruit 1/2 cup fresh, canned or cooked fruit, or 1/2 cup juice.
Vegetables or cooked vegetables, 1 cup raw leafy vegetables, or 1/2 cup juice.
Potassium is a nutrient that helps keep the body’s heart, nerves and muscles working correctly. Kidney disease may cause the kidneys to be unable to remove excess potassium from the blood creating the potential for muscle weakness, nausea, weak pulse and even heart attack.
Levels of potassium in the blood should be monitored by a healthcare provider. The normal level of potassium should range from 3.5 to 5.0.
Low potassium diets limit the total consumption to 1, 500 to 2, 500 mg daily. Check with your physician to receive the daily limit right for you.
Hyperkaliemia is the medical term that describes a potassium level in your blood that’s higher than normal.
Steps you can take to keep potassium at safe levels:
Talk with a renal dietitian about creating an eating plan
Limit foods that are high in potassium
Limit milk and dairy products
Choose fresh fruits and vegetables
Avoid salt substitutes and seasonings with potassium
Read labels on packaged foods and avoid potassium chloride
Sodium is a mineral found in most foods that helps balance how much fluid your body keeps. It also helps regulate nerve impulses and muscle contractions. Kidney disease may cause the kidneys to be unable to remove excess sodium from the body causing it to build up in the blood. Because sodium attracts and holds water, blood volume increases. This can cause:
High blood pressure
Swelling
Thirst
Heart disease
Strokes
Levels of sodium in the blood should be monitored by a healthcare provider. The normal level of sodium should range from 135 to 145 mEq/L. Low sodium diets limit total consumption to 1,500 to 2,000 mg daily. Hypernatremia is the medical term that describes a sodium level in your blood that’s higher than normal.
Check with your physician to receive the daily limit that’s right for you.
Salty Misconceptions
The biggest contributor to sodium consumption is not the salt shaker. Approximately 75% of the sodium you eat comes from sodium added to processed foods and restaurant foods. This makes it difficult to choose foods with less sodium and to limit how much sodium you are eating because it is already added to your food before you purchase it.
Kidney patients should NOT eliminate salt completely from their diet. Sodium is an essential nutrient that controls blood pressure and ensures nerves and muscles work properly, so you need the proper amount.
Sea Salt does NOT contain LESS sodium than table salt. Sea salt typically contains the same percentage of sodium as table salt.
High levels of sodium are not found only in food. Some over the counter medications contain high levels of sodium. Be sure to read drug labels carefully.
Tips for Reading a Food Label
Pay close attention to single serving size
Limit snacks to 140-150mg per serving
Limit Meals to 400-500mg
Avoid items that have over 8% of your daily value
Compare food labels of various brands
Avoid products that list salt or sodium containing compounds in the first 5 ingredients
Monosodium glutamate (MSG)
Sodium Bicarbonate (Baking soda)
Baking powder
Disodium phosphate
Sodium citrate
Sodium nitrate
Cooking tips:
Take time to plan ahead.
Shop the outer portion of the grocery store.
Use fresh meats and produce. Avoid processed food.
Use spices that don’t list “salt” in their title (example:
Choose garlic powder instead of garlic salt.)
Cook from scratch and use spices, herbs, lemon, garlic, ginger, vinegar and pepper to season food.
Look here for both the serving size (the amount for one serving) and the number of servings in the package.
Compare your portion size (the amount you actually eat) to the serving size listed on the panel. If the serving size is one cup and you eat two cups, you are getting twice the calories, fat and other nutrients listed on the label.
Check Out the Total Calories and Fat
Find out how many calories are in a single serving and the number of calories from fat. It’s smart to cut back on calories and fat if you are watching your weight.
Let the Percent Daily Values Be Your Guide
Use percent Daily Values (DV) to help evaluate how a particular food fits into your daily meal plan:
Daily Values are average levels of nutrients for a person eating 2,000 calories a day. A food item with a 5 percent DV of fat provides 5 percent of the total fat that a person consuming 2,000 calories a day should eat.
Percent DV are for the entire day, not just one meal or snack
You may need more or less than 2,000 calories per day. For some nutrients you may need more or less than 100 percent DV.
The High and Low of Daily Values
5 percent or less is low. Aim low in total fat, saturated fat, trans fat, cholesterol and sodium.
20 percent or more is high. Aim high in vitamins, minerals and fiber.
Fat, Cholesterol and Sodium
Eating less fat, cholesterol and sodium may help reduce your risk for heart disease, high blood pressure and cancer
Total fat includes saturated, polyunsaturated, monounsaturated and trans fat. Limit to 100 percent DV or less per day.
Saturated fat and trans fat are linked to an increased risk of heart disease.
High levels of sodium can add up to high blood pressure.
Remember to aim for low percentage DV of these nutrients.
Get Enough Vitamins, Minerals and Fiber
Eat more fiber, vitamins A and C, calcium and iron to maintain good health and help reduce your risk of certain health problems such as osteoporosis and anemia.
Choose more fruits and vegetables to get more of these nutrients.
Remember to aim high for percentage DV of these nutrients.
Additional Nutrients
You know about fat and calories, but it is important to also know the additional nutrients on the Nutrition Facts Panel.
Protein: Most Americans eat more protein than they need, so a percentage Daily Value is not required on the label. Eat moderate portions of lean meat, poultry, fish, eggs, low-fat milk, yogurt and cheese, plus beans, peanut butter and nuts.
Carbohydrates: There are three types of carbohydrates: sugars, starches and fiber. Eat whole-grain breads, cereals, rice and pasta plus fruits and vegetables
Sugars: Simple carbohydrates or sugars occur naturally in foods such as fruit juice (fructose) or come from refined sources such as table sugar (sucrose) or corn syrup.
Check the Ingredient List
Foods with more than one ingredient must have an ingredient list on the label. Ingredients are listed in descending order by weight. Those in the largest amounts are listed first. This information is particularly helpful to individuals with food sensitivities, those who wish to avoid pork or shellfish or limit added sugars or people who prefer vegetarian eating.
Clinical research has led to EVERY disease treatment prescribed by doctors today!
Clinical research is a branch of healthcare science that determines the safety and effectiveness of treatments intended for human use. They can be used to study prevention, treatments, diagnoses or relieving symptoms of a disease. The goal of clinical trials is to determine if new treatment options are safe and effective before they are provided for patient use.
There are many benefits to clinical trials!
You have the opportunity to receive the newest treatment available!
You get to receive extra care and attention from the clinical trial doctors and staff.
Clinical trials offer hope and an opportunity to help in finding better treatments for you and others.
What are the types of clinical research?
Observational Studies
do not test new drugs or treatments. In observational studies, doctors and researchers analyze health data to find links between a diagnosis and specific health conditions.
Clinical Trials
test new ways to prevent, detect or treat diseases. Treatments may be new drugs, combinations of drugs, surgical procedures or medical devices.
Clinical trials make a difference!
All advances in treating diseases have only been made possible because of volunteer participants. To have better treatments in protein-spilling diseases, researchers rely on the participation of patients like you!
We Can Assist You In:
Learning all the details, understanding the terminology, and finding the facts about clinical trials.
Educating you and reviewing informed consent documents for you to sign. Informed consent is the most important safety guideline in a clinical trial! This consent protects your confidentiality and gives you the right to withdraw from the study at any time!
Explaining the protocols that have been put in place to prevent historic violations of trust from happening again.
By having you collect urine for 24 hours, your doctor can get an idea of the amount of protein you are leaking each day. Protein in the urine (proteinuria) is a sign that your kidneys are not filtering correctly (since protein should stay in the blood).
Your doctor will provide you with a special collection container and instructions, but here are some general things to keep in mind:
Generally, 24-hour urine collection starts in the morning, right after your first bathroom break of the day (don’t collect that one, but do start the clock).
It is important not to skip any collection opportunities within the 24 hour period. Also, try to collect all of the urine you can, including your first void the next morning.
You can collect on the go using any clean widemouth container stored in a bag of ice.
Keep your collection container cold in the fridge or on ice and return it promptly according to the instructions provided by your doctor.
Be sure to ask about any diet changes your doctor may recommend (or not) during your 24 hour collection as some things may interfere with the test results.
1. Ensure your technology meets the meeting requirements
Decide ahead of time what device you will use for your telemedicine appointment (computer, laptop, smartphone, or tablet). You’ll also need a reliable internet connection. If you don’t have one at home, you may be able to find a free wifi hot spot at your local library or at a national food chain. Wi-Fi Map is an app that can help you find a wifi hotspot, without an internet connection.
2. Set-up prior to your appointment
Your physician’s office may need you to set up an online video conferencing account or download an app for your telehealth appointment. Ask for a direct contact number in case you have issues during your appointment.
3. Choose a quiet, private area for your appointment
Find a quiet place to reduce distractions and interruptions, and to make sure your doctor can see and hear you during your appointment. Good lighting will also help, try facing a window.
4. Prepare paperwork ahead of time
Prepare or update your recent medical history, medication list, and recent lab work. This will help if you are seeing a specialist or doctor for the first time. Also, have your insurance information, pharmacy contact, consent for telehealth appointment signed, and payment information ready. Most physicians’ offices will contact you in advance to obtain basic information and review it prior to the appointment.
5. Obtain vital signs
If you are able, obtain your vital signs prior to your appointment. If you have an electronic blood pressure cuff, you can find your blood pressure and heart rate prior to your appointment. You can also take your weight and temperature at home.
6. Take pictures of areas of concern
Document any rashes, swelling, or areas of concern you want the doctor to look at. Let the physician’s office staff know you have photos when you set up your appointment. You may need to email the pictures or upload them into a secure patient app. Likewise, if you have good lighting during your virtual appointment, you can show the doctor your areas of concern there.
7. Be prepared for co-pays
It’s important to know most insurance companies consider telehealth visits comparable to a face-to-face visit. You need to expect the same co-pay and any outstanding payment due at the time of your visit.
8. Write down questions ahead of time
Having a new type of visit may cause distraction or stress, writing down your questions to ask your doctor can help reduce it and help you remember everything you want to say.
9. Review your treatment plan
You should review your treatment plan with your physician at the end of your appointment. Repeat what you understand to be the next steps, so your physician can confirm. It’s also helpful to take notes during your appointment, so you do not forget key details. Don’t be afraid to ask clarifying questions during your appointment too.
10. Set up a follow-up appointment
At the end of your telehealth visit, set up a follow-up visit as necessary. Ask if your next appointment will be another telehealth or face-to-face, so you can prepare appropriately.
Being diagnosed with kidney disease often leads to a plethora of unknowns, as medical literature on such conditions may be scarce or outdated. Myths surrounding these diagnoses can exacerbate confusion and fear, making it challenging for patients to navigate their treatment options. Especially with rare kidney disease, misconceptions about their causes, symptoms, and prognosis are widespread, further complicating the journey for those affected.
Click the PDF below toview a chart of Facts and Myths about kidney disease
Kidney disease runs in my family, but I work out regularly and eat well so I’m not worried.
Some forms of kidney disease are genetic, and even the healthiest people may still be at risk.
Kidney disease runs in my family, so I know I’m eventually going to get it too and there’s nothing I can do about it.
If you talk to your doctor early on about kidney disease running in your family, there are some steps you can take to protect your kidneys.
My blood pressure is high, but my doctor said we just need to find the proper medication to treat it
Persistent high blood pressure can be a sign of kidney disease which could require additional medication.
My family doctor is familiar with my health history and has never mentioned kidney disease, and I feel wonderful, so I’m not concerned.
By the time you feel the signs and symptoms of kidney disease, it could be more advanced. Early kidney disease is often invisible and has no symptoms.
I have been diagnosed with chronic kidney disease, and my doctor told me that waiting until my kidneys fail to go on dialysis is my only option.
Depending on the type of kidney disease you have, there may be treatment options that could help save your kidneys and prevent you from going on dialysis. Talk to your family about your concerns and desire to seek a second opinion with a kidney specialist. Talk to your kidney doctor about your specific diagnosis.
My family doctor takes care of many people with kidney disease and understands how to take care of me.
People living with kidney disease should be seen by a nephrologist (kidney doctor) to make sure they are taking the right medications and following a kidney-friendly diet.
Kidney disease runs in my family so I know it may be genetic, but genetic testing is costly.
Today, there are several low-to-no-cost genetic testing options, that include genetic counseling available. These tests could determine if you have the APOL1 gene that puts you at greater risk for FSGS, a specific type of chronic kidney disease
Kidney disease only affects the elderly.
Although it may seem this way, this is not the case. FSGS, a rare form of kidney disease, commonly presents in young Black people in their teens and twenties. Parents should be involved in discussions about kidney disease with their teens and young adult children.
People get kidney disease because they eat poorly and don’t take care of themselves.
There is a form of kidney disease called FSGS that is caused by a genetic variant called APOL1. This gene puts some people at greater risk of kidney disease, whether they live a healthy lifestyle or not.
Having a nice, friendly doctor is more important than their understanding of kidney disease.
While it is important to have a doctor who listens to you, it is equally important to be attentive to your kidney health and proactive with your care.
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