Genetics Northern California

Pediatric Genetics Lipid Program

The Regional Pediatric Genetic Lipid Program provides evaluation, counseling and treatment for children and adolescents at the highest risk for early onset cardiovascular (heart and blood vessel) disease due to genetic lipid abnormalities. The criteria for being evaluated by 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.

14dn-2169Families who attend the clinic are seen by providers from various disciplines which can include: 
     - Genetics
     - Cardiology 
     - Nutrition 
     - Endocrinology
     - Medical Social Work

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. 

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 lipoprotein levels. Abnormal lipids, or "dyslipidemias" can also be caused by genes, and 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 Genetic 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. Your completed questionnaire and blood test results will then be evaluated by the Lipid Program staff. 

If the results show a higher than average risk for early cardiovascular disease, your child and family members may be scheduled in a future lipid clinic. If the results show a lower risk, you and your pediatrician will be provided the findings and recommendations. The Pediatric Lipid Program will be available to you and your child's pediatrician if there are further questions or concerns.

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 dietitian provide personalized nutrition guidelines.

At the clinic visit, your family will have the opportunity to have an in-depth conversation with a geneticist or endocrinologist, genetic counselor, dietician, and possibly a psychosocial specialist. 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))

Does the testing require any special preparation?
The blood tests require a 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.

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A Healthy Lifestyle
VeggiesA healthy lifestyle will lower the risk for heart disease and stroke, and can help reduce the need for medication. Here are some guidelines for a heart healthy lifestyle:

Eat lots of fresh fruits and vegetables. Include whole grains.

  • 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 source 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, almonds, walnuts, avocados, and cashews help protect blood vessels from damage and help support a healthy level of HDL cholesterol (the good kind) in your blood. Since high fat foods 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.

  • 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.

For more information see: How Fats Compare 

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 Permanente facility. They offer a variety of classes on nutrition and heart-healthy eating. Some Health Education Departments also offer books and tapes to borrow or purchase. To find out what your local Health Education Department offers, call your local Kaiser Permanente facility and ask for the Health Education Department or look online. 

Created by: Suzanne Kordesh, MPH, RD
Last reviewed: April 2020
Reviewed by: Leslie Manace, MD, MPhil; Sub-Chief, Kaiser Permanente Northern California Genetics and Suzanne Kordesh, MPH, RD