Children with FH
The American Academy of Pediatrics says all children should have a cholesterol test between the ages of 9 and 11.
Children with a family history of heart disease or FH should be tested at age 2.
Everyone should have another cholesterol test between the ages of 17 and 21.
When I discuss beginning cholesterol medications with parents, I often ask what they would do if their child had type 1 diabetes, Would they agree to the use of insulin? Universally they say “of course” – without insulin a child with type 1 diabetes will die so the answer is literally a “no brainer.” Having very high cholesterol is a little different – it can be silent for many decades. But with FH, high cholesterol is the only risk factor needed for a heart attack in early adulthood. Children with FH start laying down cholesterol in their arteries (fatty streaks) as toddlers and by the time children reach the age of 12 many will already have measurable atherosclerosis. Treatment with cholesterol lowering medications can dramatically reduce the risk associated with FH. Observational studies from Europe have found that long-term cholesterol-lowering therapy with statins removes excess lifetime heart disease risk associated with FH.
First, take a deep breath. Remind yourself that even if you passed the gene for FH on to your child, this is not your fault. You have probably also passed on many wonderful traits to your child. And luckily, you are living at a time when having FH no longer means you (or your child) are doomed to early heart disease. You have knowledge and knowledge is power.
The first thing you can do is adopt a heart-healthy diet and commit the entire family to an active lifestyle.
If you are a smoker, quit. Quitting smoking is a gift to you and your children. Children model their parent’s behaviors, and one of the best ways to ensure that your children remain life-long non-smokers is to be a non-smoker yourself.
Unfortunately, although diet, exercise, maintaining an ideal body weight, and not smoking are important for everyone, these are not enough when you have FH.
The National Lipid Association recommends cutting your children’s LDL in half or getting it under 130 mg/dL. The best way to do that is to start your child on cholesterol-lowering medication as early as possible (between ages 8 and 10).
It’s important to understand that children with FH start collecting cholesterol in their arteries at birth. That’s why the earlier you begin treatment; the better your child’s chances are of avoiding early heart disease.
Many couples learn that they both have FH when they have a baby who has homozygous FH (HoFH). These children are often diagnosed around the age of 2 when they develop xanthomas (orange cholesterol deposits on the elbows, buttocks, legs, ankles, on the tendons of the fingers and between the fingers). If you see these, you will want to get your child’s cholesterol test right away.
Children with HoFH can have LDL cholesterol levels over 400 mg/dL – sometimes as high as 1000 mg/dL. It is very important for children with HoFH to see a lipid specialist to start treatment right away.
Some children will respond quite well to high dose statins combined with ezetimibe and a bile acid sequestrant. Other children will require lomitapide, PCSK9 inhibitors, or LDL-apheresis. LDL-apheresis is a procedure in which LDL cholesterol is physically removed from the blood every week. Additionally, evinacumab is approved for children at age 12, and the FDA is considering approving evinacumab and lomitapide at age 5.
If left untreated, children with HoFH develop heart disease extremely early, having heart attacks in their teens or earlier. Luckily, there are treatments available today and more being researched that have the potential to lower their LDL level profoundly.
The American Academy of Pediatrics (AAP) recommends children begin taking cholesterol-lowering medications around the age of 8 for children with FH. Statins are the first drug typically prescribed. Children with HoFH should begin treatment as soon as they’re diagnosed.
If your child can’t get their LDL levels below 130 mg/dL, you may need to consider additional medication.
Many parents see a cholesterol specialist to help get their child started on their medication.
Children will typically have another visit to their healthcare provider 6 weeks after beginning medication. After that, they may need to be seen every 3 to 6 months.
It’s important that you have their blood tests done before the doctor’s appointment to ensure you can discuss the results with your healthcare provider.
Unfortunately, because FH is caused by genetics, there is currently no cure. Medications can help normalize the cholesterol in a person with FH.
Cholesterol-lowering medications only work while you are taking them.
Stick with it! These medications are crucial.
Your child may not be at risk of a heart attack right now, but they are at risk in the future. Taking their medication is a habit they should learn early. You could consider making it a family affair – take your medications together!
This is very common. Teens and kids with FH are like any other children, but obviously the stakes are higher.
It’s clearly frustrating to see your child’s eating habits get worse, but you have to pick your battles. Children will still be children.
The best thing you can do is set a good example. Make the foods you serve at home as healthy as possible and hopefully they will come around.
Find help getting the care you deserve
Navigating health care today can be frustrating and difficult. The Family Heart Foundation can help you navigate your journey FH. Experts at the Care Navigation Center are ready to answer all your questions.