Genetics Northern California

Pediatric Lipid Program

The Regional Pediatric Lipid Program provides evaluation, counseling and treatment for children and adolescents at the highest risk for early onset cardiovascular disease due to genetic lipid abnormalities. The criteria for evaluation through the Lipid Program includes a family history of early cardiovascular disease (<55 years old in males, <65 in females) in parents, grandparents, aunts, or uncles, along with an abnormal blood lipid test.

Families who attend the clinic may be seen by providers from various disciplines including the following: 

  • Genetics

  • Cardiology 

  • Nutrition 

  • Endocrinology

  • Psychosocial

Cardiovascular disease prevention through appropriate lifestyle changes including diet and exercise is the treatment of choice. In addition, the clinic staff members carefully evaluate whether medication may be beneficial. If medications are indicated, the clinic staff will make recommendations as to the appropriate age to start and how follow-up should be managed. The clinic staff may also work with the parents and their primary care providers to optimize their own treatment regimen if necessary.

The coordinator of the Regional Pediatric Lipid Program is Suzanne Kordesh, MPH, RD.

Condition Types
Below is a list of the most common genetic disorders followed by the Regional Lipid Program.


What Are Lipids?
Lipids (such as LDL cholesterol), also known as "lipoproteins", circulate in your blood. Some of these lipoproteins are good for you, but too much of other types can be unhealthy. Eating an improper diet, being overweight, or not getting enough exercise can lead to abnormal changes in the cholesterol, triglyceride, HDL and LDL levels. Abnormal lipids, or "dyslipidemias" can also be caused by genetic problems, which can lead to cardiovascular disease.
A healthy lifestyle can go a long way to prevent cardiovascular disease due to abnormal lipids.

What does a referral to the Pediatric Lipid Program mean for my child?
A referral to the Lipid Program does not always mean a clinic visit is necessary. If your child is referred, you will be asked to complete a Family Health History Questionnaire. Family members will also be asked to complete laboratory screening blood tests. Once the completed questionnaire and laboratory test results are evaluated by the Lipid Program, you will receive a letter summarizing the results.

If the results show a higher than average risk for early cardiovascular disease, your child may be scheduled for an appointment at an upcoming clinic. If the results show a lower risk, you and your pediatrician will receive a letter summarizing the findings and recommendations. The Pediatric Lipid Program will be available to you and your doctor for further questions or concerns if future family health events suggest that your child's risk has increased.

What happens when my child is scheduled for a clinic visit?
If your child is scheduled for a clinic appointment, you will be asked to complete and submit a diet record for your child prior to the visit.

A diet record is a way of recording everything your child eats and drinks for a period of five days. The dietary information from the food record is very important and will help the nutritionist provide your child with personalized nutrition guidelines.

At the clinic visit, your family will have the opportunity to have an in-depth conversation with a geneticist, genetic counselor, nutritionist and possibly a psychosocial specialist at the clinic.  Clinic visits are usually between 2 to 2 1/2 hours and are generally held in the morning. All family members are encouraged to attend.

Which blood tests are recommended before the clinic visit?
The basic tests that the Pediatric Lipid Clinic requires for assessing risk for early cardiovascular disease are: 

  • Cholesterol

  • Triglycerides

  • High Density Lipoprotein (HDL)

  • Low Density Lipoprotein (LDL)

  • Lipoprotein a (Lp(a))

  • TSH (a thyroid test)

  • Fasting blood sugar

Does the testing require any special preparation?
The blood tests require a 9 - 12 hour fast. That means nothing to eat or drink except plain water.

Lipid Lab Values - What do the test results mean?
The lab results might suggest a genetic condition is present.  Sometimes the lab results show that specific lifestyle changes might be useful.  After making lifestyle changes, some people are able to improve their laboratory values and this can be very encouraging. Improved lab results can motivate people to continue with their heart-healthy lifestyle.  However, even if the lipid lab values do not change, these heart-healthy lifestyle changes may help lower the risk for cardovascular disease in the future.

The definitions below may be helpful in understanding blood lipid lab values.

TOTAL CHOLESTEROL (TC) - Represents the total of HDL + LDL + other lipids 
   < 200           Desirable
   200 - 239    Borderline high
   > 240           High

TRIGLYCERIDES (TG)  - A type of fat in the blood.  This value changes more rapidly than cholesterol in response to diet and exercise.
     < 100            Normal or < 150 Normal (depending on age)
     150 - 199    Borderline high
     200 - 499    High
     > 500            Very high

HIGH DENSITY LIPOPROTEIN (HDL) - "good" cholesterol, high levels reduce the risk for heart disease; HDL levels can be increased by exercise, weight loss, and by changes in the type of fat or carbohydrate in the diet.     
     < 40           Low
     > 55           High (this is good)

LOW DENSITY LIPOPROTEIN (LDL) - "bad" cholesterol, high levels increase the risk for heart disease
     < 100           Optimal
     100 - 129    Near optimal/above optimal
     130 - 159    Borderline high
     160 - 189    High
     > 190            Very high

LIPOPROTEIN a (Lp(a)) - similar to LDL; made by the liver; an inherited trait that is not affected by diet; an independent risk factor for heart disease; levels slightly higher in African-Americans
      < 30 mg/dL   Optimal

THYROID STIMULATING HORMONE (TSH) = measurement of thyroid activity; low thyroid activity (hypothyroid) is associated with an increased risk for heart disease; hypothyroidism can change lipid values 
     0.2-5.5  uIU/mL   Normal range

FASTING BLOOD GLUCOSE (FBS) = sugar in the blood; normal levels of insulin keep blood glucose levels in check; high FBS levels can be a sign of diabetes or potential development of diabetes; diabetes can change lipid values; FBS levels can be falsely increased if you do not fast 12 hours before the blood draw
     < 100 mg/dL   Optimal 


A Healthy Lifestyle
Having a healthy lifestyle will lower the risk for heart disease and stroke, and can help reduce the need for medication (or lower the dosage) later in life for those with abnormal lipids. The National Cholesterol Education Program now recommends therapeutic lifestyle changes (TLCs) as a key element for reducing the risk for heart disease.

Some recommended TLCs: 

  • Reduce saturated fat and cholesterol in your diet

  • Include more soluble fibers and plant sterols in your diet

  • Weight reduction if overweight

  • Increase physical activity

The current Heart Healthy recommendations for dietary fat are as follows:     

Total Fat should be between 25 - 35% of calories.

This range is neither very high fat nor very low.  Extremely low fat diets tend to cause triglyceride levels to rise. Choosing healthy fats is as important as the amount of fat you eat.

Saturated Fat should be under 7% of calories.
Saturated fat tends to raise LDL cholesterol (the bad kind). Limiting your saturated fat to 7% or less of calories can help reduce LDL levels.

Trans Fat should be avoided as much as possible.
Trans fats are commonly found in solid fats such as stick margarine, in baked goods like cookies, pastries, donuts and fried foods. Soft margarines, tub and liquid, and vegetable oil spreads are lower in trans fats. You can tell if a processed food has trans fat by looking for the words "hydrogenated" or "partially hydrogenated" on the food label in the ingredients list.

Polyunsaturated Fat should be limited to 10% of calories.
There are 2 main types of polyunsaturated fats: omega 6 and omega 3 fats. It is a good idea to get omega 6 fats and some omega 3 fats every day.

Monounsaturated Fats are recommended up to 20% of calories.
Monounsaturated fat can help lower LDL levels but not lower HDL or raise triglyceride levels when substituted for saturated fats.

Cholesterol is recommended to be limited to less than 200 mg per day.
To keep dietary cholesterol below 200 mg per day, limit your intake of high fat meat, eggs and full fat dairy foods.

Other Guidelines for a Heart Healthy Lifestyle:

Eat lots of fresh fruits and vegetables

  • Have at least 5 servings of fruits and vegetables per day. Replace refined grains with whole grains, such as whole grain bread, brown rice, and whole grain pasta. This will provide a good variety and quantity of vitamins, minerals and soluble fiber. Soluble fiber is the type of fiber that helps to clear cholesterol from the blood. The best sources of soluble fiber are fruits, legumes (beans), oatmeal, oat bran, and psyllium powder (like in Metamucil).

Eat the right kind of fat

  • Monounsaturated fat in olive oil and canola oil help protect blood vessels from damage and help support a healthy level of HDL cholesterol (the good kind) in your blood. Almonds, walnuts, avocados, and cashews are also high in monounsaturated fat. Since high fat foodsl like these are also high in calories, they should be eaten in moderation.

  • Omega-3 fatty acids in salmon, albacore tuna, halibut, sardines and herring can help lower triglycerides and help prevent blood clots.

  • Omega-6 fats are found in vegetable oils such as sunflower, safflower, corn and soybean oil.

  • Saturated fat in red meat and whole fat dairy products tend to raise LDL cholesterol (the bad kind). Use small portions of lean meat and low fat dairy products.

  • Trans-fatty acids found in processed foods are not good for your blood vessels.  Avoid packaged food items that have "partially hydrogenated" oils listed on the ingredient panel.

  • How Fats Compare - A healthy living handout reviewing healthy fats and harmful fats.

Take a good quality multi-vitamin

  • Make sure it has all the B vitamins in the B vitamin family and includes Thiamin, Riboflavin, Niacin, B6, Folic Acid (Folate), and B12.

Get plenty of exercise

  • Exercise that's best for the heart is "aerobic" exercise such as running, skating, walking, swimming, bike riding and dancing.  It is best to exercise daily for at least 30 minutes.

  • Regular aerobic exercise, in addition to helping maintain healthy body weight, can help increase HDL (the good cholesterol).

Keep weight in a healthy range

  • Keep food portion sizes moderate.  Even healthy foods in large portions will add weight.

  • Read food labels for calories and portion sizes.

  • Eat high calorie foods in very small portions or only on rare occasions.

When lifestyle changes aren't enough, lipid-modifying medications may be considered. However, for many people, following the steps outlined above can reduce the need for medication (or lower the dosage) if medications do become necessary.

Health Education

There are Health Education Departments at almost every Kaiser facility. They offer a variety of classes on weight management and heart healthy eating. Some classes provide one on one instruction, while others are in a group setting. The Health Education Departments at some facilities also offer books/tapes to borrow or purchase. These include cookbooks, exercise instruction, and general books on cholesterol management. To find out what your local Health Education Department offers, call your local Kaiser Permanente facility and ask for the Health Education Department.
You can also visit the Kaiser Permanente web site: www.kp.org/healthylifestyles

Created by: Suzanne Kordesh, MPH, RD
Reviewed by:Suzanne Kordesh, MPH, RD and Kimberly Barr, MS, CGC

Last Updated:  5/2009