Also known as:
Congeital central hypoventilation syndrom, CCHS, Late onset congenital central hypoventilation syndrome, LO-CCHS, Haddad syndrome, HVS
provides inpatient and outpatient consultation, evaluation and state-of-the-art treatment for a wide range of acute and chronic lung diseases and critical illnesses.
What is obesity hypoventilation syndrome in children?
Obesity hypoventilation syndrome (OHS) is a breathing problem. It affects some children who are obese. Poor breathing causes too much carbon dioxide and too little oxygen in the blood. This is a rare but life-threatening issue. Your child will need treatment right away.
When your child breathes, fresh air (oxygen) enters tiny sacs in his or her lungs. Tiny blood vessels run through the walls of these air sacs. When your child breathes in, oxygen moves from inside these sacs into the blood vessels. Carbon dioxide moves the other way, from the blood to the air sacs. So when your child breathes out, that air is low in oxygen and high in carbon dioxide. This process is called gas exchange.
Proper gas exchange is very important for human life. Every cell in your child’s body needs oxygen to live. Carbon dioxide is a waste product that needs to be removed from the body. Children with OHS may not breathe as often and as deeply as they need to. This stops proper gas exchange. This causes carbon dioxide to increase in the blood, and oxygen levels to drop.
OHS often occurs with obstructive sleep apnea. This is a related issue. In this condition, your child’s airway collapses or gets blocked during sleep. In rare cases, a child may have OHS but not obstructive sleep apnea.
OHS only happens to people who are obese. People who are obese carry a large amount of extra fatty tissue. This is more than a person who is just overweight. OHS can happen in children and adults. It occurs in both males and females. Not everyone who is obese gets OHS, though.
What causes OHS in a child?
All children with OHS are obese. OHS is more common in children who are very obese. Experts aren’t sure why some obese children develop OHS and others don’t.
Several factors may cause OHS. Extra weight forces your child’s respiratory system muscles to work harder than normal. In OHS, the nervous system may respond too slowly to having too much carbon dioxide and too little oxygen in the blood. Children with OHS may have changes in certain hormones. Obstructive sleep apnea may also cause the disease.
What are the symptoms of OHS in a child?
Symptoms of OHS and sleep apnea are often the same. Some of these symptoms include:
- Loud, chronic snoring
- Snoring with pauses. This is followed by choking or gasping.
- Daytime sleepiness
- Morning headaches
- Memory or concentration problems
- Irritability and depression
- Fast, shallow breathing
- Shortness of breath during activity
During an exam, your child’s healthcare provider may notice that your child’s heart makes abnormal sounds. Your child’s healthcare provider may also say that your child has a thick neck and a small opening to his or her throat.
How is OHS diagnosed in a child?
Your child’s healthcare provider will ask about his or her health history. He or she will also ask about your child’s symptoms. The healthcare provider will give your child an exam. This exam will focus on your child’s respiratory system.
Your child’s healthcare provider will also figure out if your child is obese. This is calculated using your child’s height, weight, age, and sex. If your child is obese, he or she may have OHS.
Your child’s healthcare provider will do tests to make the diagnosis. These tests will also rule out other causes of your child’s symptoms. These tests may include:
- Arterial blood gas, to check the levels of oxygen and carbon dioxide in your child’s blood
- Thyroid tests. Thyroid problems can lead to lung disease.
- Lung function tests, to look for other lung issues
- Chest X-ray, to check for lung or heart disease
- Sleep study, to look for sleep apnea
- Electrocardiogram, to check your child’s heart rhythm
How is OHS treated in a child?
If your child is diagnosed with this condition, he or she will need treatment right away. Your child may need the following treatment:
- A machine that gives positive airway pressure. This will help keep your child’s airways open.
- Support from a breathing machine (ventilator). This is for severe OHS that needs to be treated in a hospital.
- Losing weight through lifestyle changes. These include diet and exercise.
- Treatment for conditions that can make OHS worse. These can include hypothyroidism.
- Respiratory-stimulating medicines. These are only used in rare cases.
- Treatment of complications of OHS
Almost all children will need to use positive airway pressure right after their diagnosis. Lifestyle changes for weight loss are also a must. OHS will go away once your child reaches a healthy weight. Even losing a modest amount of weight may decrease how severe your child’s condition is.
One of the best ways to help your child lose weight is to make lifestyle changes as a family. It’s important for you to set a good example. You can:
- Serve more nutritious foods. These include fruits, vegetables, whole grains, and lean sources of protein.
- Limit foods and drinks high in sugar and fat.
- Encourage your child to be active each day. Exercise with your child to give support.
- Ask your child’s healthcare provider about weight-loss surgery. This may be an option for older teens.
Ask your child’s healthcare provider how to help your child lose weight. The Obesity Action Coalition is a helpful resource (http://www.obesityaction.org/). It may also be helpful to work with one or more specialists. These may include a nutritionist, a physical trainer, or a psychologist.
What are the possible complications of OHS in a child?
If it’s not treated, OHS can cause serious problems in children. These can include:
- Swelling in your child’s legs
- Higher pressure in the vessels carrying blood from the heart to the lungs (pulmonary hypertension)
- Right-sided heart failure (cor pulmonale)
- Secondary erythrocytosis. This happens when your child’s body makes too many red blood cells.
- Chest pain
- Sudden death
Your child's healthcare providers will work closely with you and your child to help prevent these problems. Your child may need treatment for these issues. Follow the care plan your child’s healthcare provider prescribes. This can help lower your child’s risks.
What can I do to prevent OHS in my child?
Your child can prevent OHS by maintaining a healthy weight. Staying active, making healthy food choices, and eating sensible portions can help your child stay in a healthy weight range. Your whole family should follow this approach. This will help support your child, and keep your family healthy.
How can I help my child live with OHS?
Teens with OHS should stay away from alcohol. Alcohol can make their condition worse.
Children with OHS should avoid certain other medicines. These include benzodiazepines, opiates, and barbiturates. Tell all of your child’s healthcare providers that he or she has OHS.
When should I call my child’s healthcare provider?
Call 911 right away if your child has signs of breathing problems. These include loss of consciousness.
Key points about obesity hypoventilation syndrome in children
- OHS is a breathing problem that affects some children who are obese. It’s a life-threatening condition.
- OHS may cause loud snoring, trouble concentrating, and shortness of breath during activity.
- Your child will likely need positive airway pressure to treat OHS. He or she will also need to lose weight. Your child may need other treatments as well.
- OHS will go away once your child reaches a healthy weight.
- OHS can cause serious problems. Work with your child’s healthcare provider to lower your child’s risks.
Tips to help you get the most from a visit to your child’s healthcare provider:
- Know the reason for the visit and what you want to happen.
- Before your visit, write down questions you want answered.
- At the visit, write down the name of a new diagnosis, and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you for your child.
- Know why a new medicine or treatment is prescribed and how it will help your child. Also know what the side effects are.
- Ask if your child’s condition can be treated in other ways.
- Know why a test or procedure is recommended and what the results could mean.
- Know what to expect if your child does not take the medicine or have the test or procedure.
- If your child has a follow-up appointment, write down the date, time, and purpose for that visit.
- Know how you can contact your child’s provider after office hours. This is important if your child becomes ill and you have questions or need advice.