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If you have a child with SCADD, all your future children should be tested for SCADD at birth. If you have older children, it is possible that they might also have SCADD, even if they have not shown any symptoms. Ask your doctor about whether or not they should be tested. You might be referred to a medical geneticist or genetic counselor to discuss testing further. A medical geneticist can be found by asking your doctor for a referral or looking on the American College of Medical Geneticists website. Genetic counselors can be found on the National Society of Genetic Counselors website.

The metabolic genetics clinic that cares for you or your family member may be able to help connect you with other families in your area with SCADD. There are also online family support organizations where you will be able to meet other families. Two groups which are familiar with SCADD are:

The Fatty Acid Oxydation Disorder Family Support Group.
and
United Mitochondrial Disease Foundation.

A person with SCADD should be seen by a doctor called a "medical geneticist" or "metabolic physician" and a metabolic dietitian. These specialists are familiar with SCADD. If your child has had a positive newborn screening test for SCADD, the newborn screening program in your state will be able to refer you to a metabolic geneticist.
Here are some sites that will help you find a metabolic genetics clinic near you.

The plan regarding your child’s sleep will be individualized based on your child’s age and whether or not they have had any symptoms.
Talk to your metabolic physician and plan ahead for when your baby will be sleeping longer at night. At first, you may be told to wake your baby frequently to feed him/her. As he/she gets older, you can probably let him or her sleep longer unless they are sick.

The emergency protocol letter for a child with SCADD, if needed, typically includes:

Short chain acyl-CoA dehydrogenase deficiency, or SCADD, is a genetic disease in which the body is not able to properly break down fat to create energy. SCADD is one of a group of disorders called fatty acid oxidation disorders. The body usually gets its energy by breaking down (sometimes called "burning") sugars and fats. People with SCADD are able to break down sugar normally but, because of a problem in the gene called ACADS they are not able to break down a type of fat called short chain fatty acids.

Most people who have SCADD do not have any symptoms. At this time (2016), researchers do not understand why some people with SCADD have symptoms and others do not. For people with SCADD who do have symptoms, these symptoms include problems eating, low muscle tone (they may be floppy), delays in development, vomiting, low energy (lethargy) and seizures in infants and muscle cramps or pain and difficulty with exercise or episodes of nausea, vomiting and shortness of breath in older children and adults.
When a person with SCADD is healthy and eating regularly, they are able to get enough energy from the sugars in their diet and they appear totally healthy. However, when certain people with SCADD go a long time without eating and their bodies begin to burn fat for energy, they can become sick with a metabolic crisis, which can cause excessive sleepiness or irritability, vomiting or diarrhea, and increased levels of acids in the blood (metabolic acidosis). If a metabolic crisis is not treated, the child may have seizures, problems breathing, or coma. Common reasons for going without food include illness, operations, or when babies begin to sleep through the night.

Many people with SCADD will never have any symptoms. Individuals with SCADD who have had a metabolic crisis or who may be at risk for having a metabolic crisis should talk to their doctor about having an emergency protocol letter.
Emergency protocol letters provide information about your/your child’s diagnosis of SCADD and give specific treatment instructions to health care providers in emergency rooms or other health care settings that might not be familiar with the diagnosis of SCADD. Because children with SCADD may have a metabolic crisis when they become ill, they often require intravenous (IV) glucose in situations when a child without SCADD would recover on their own without treatment. If healthcare providers are not familiar with you/your child and the diagnosis of SCADD, they may be unwilling to provide the IV glucose in time to prevent serious complications.
The emergency protocol letter will provide the necessary information to explain the diagnosis and correct treatments so that a health care provider not familiar with SCADD will be able to provide the correct treatment for a person with SCADD as quickly as possible.
Up to date protocol letters should be carried at all times with the family or caregiver of the child. Many people have found it helpful to keep the letter in a plastic folder or bag in the child’s diaper bag. You might need to have multiple copies of the letter to be able to have them available to all parents and caregivers. It may also be helpful to keep copies of the letter at local hospitals, but, because these can take time to find, a copy of the letter should also be carried with the child.

Many children with SCADD will not develop symptoms. However, if you are a parent of a child with SCADD you should be familiar with the signs of a metabolic crisis and what to do if you think you child is starting to get sick.
During every visit with your metabolic doctor, you should discuss what to do when you are concerned about your child’s eating and possible symptoms. Over time, you will get to know your child and the best way to respond when they are not eating due to illness or stress. You will also learn the signs that indicate that you should take your child for emergency treatment.
If your child is sick, it is a good idea to feed them more frequently. The child should be fed foods high in sugar and starch. You should avoid feeding them foods with fat.
When you first notice that your child is not eating, you should offer him/her a favorite high sugar food, such as fruit juice. It is best to avoid Pedialyte and other rehydration drinks which do not have adequate amounts of sugar to help a child with SCADD recover once their blood sugar starts to drop.
If a child continues to not eat, is vomiting, and/or if they show signs such as low energy (lethargy) or irritability, take them to an emergency room (ER) for evaluation and treatment. Take your child’s emergency protocol letter with you and show it to the ER staff when you arrive. If you do not have a letter, call your metabolic clinic to let them know you are going to the emergency room.

If you or your child with SCADD will need to go without eating because of surgery, have the surgeon talk with your metabolic physician to plan the best way to get ready for surgery and make sure that you/ your child receives adequate nutrition before and during surgery.

SCADD is caused by changes (mutations or mistakes) in the gene called ACADS which provides instructions for making the enzyme or protein called "short chain acyl-coenzyme A dehydrogenase" or SCAD which breaks down fat for energy. Each person has two copies of the ACADS gene. In people with SCADD, both copies of the ACADS gene have a mutation (mistake).

The later-onset form of SCADD usually shows up in older children and adults. It causes muscle cramps and pain and difficulty with exercise. Adults with SCADD can also have episodes of nausea, vomiting, and shortness of breath.
Milder variants of this condition can be found in the general population and usually do not require treatment.

Most children who are diagnosed with SCADD based on newborn screening tests (and confirmed by follow-up testing) never develop any symptoms.
For those that have problems, the symptoms can range from mild to severe. If symptoms occur, they often start when the child is between one week and 3 months of age.
Infants with SCADD who go a long time without eating well may have their blood sugar drop too low (hypoglycemia) and/or have toxins from partially burned fats build up in their bodies. When this happens they become unusually sleepy (lethargic), irritable, and have trouble eating. This is called a metabolic crisis. If a child who gets these symptoms is not treated, he/she may go on to develop seizures and coma.
Some children with SCADD may also experience trouble gaining weight, delays in learning, hyperactivity, muscle weakness, low tone (floppiness), and an enlarged liver (hepatomegaly).

The next steps after a person is diagnosed with SCADD depend on the age of the individual and the symptoms that they have had or are having. For example, people with the severe forms of the condition who have symptoms of low blood sugar or metabolic crisis should be given intravenous (IV) glucose, a form of sugar that the child can burn for energy, immediately.
Individuals who are not currently having symptoms may need to see metabolic genetics specialist and metabolic dietitian, to learn about the condition, its symptoms, and treatment and should make sure that their health care providers are aware of the condition. Families should be aware of the possible symptoms, who to call if a child develops these symptoms, and the recommended treatments. Treatments may include avoiding going a long time without eating, eating a low-fat diet, and watching carefully when a child develops another illness. To find a metabolic dietitian specializing in diets for people with SCADD, visit the GMDI Find a Metabolic Dietitian webpage.

If a newborn screening result suggests SCADD, the child should be evaluated for signs of the disease by their doctor or a metabolic geneticist. Signs of SCADD include poor feeding, low energy, sleepiness, low tone (floppiness), or seizures. If any of these signs are present, treatment should start immediately.
If no symptoms are present, the family should be taught about the importance of regular feeding and the importance of seeking treatment immediately if the child becomes ill (poor feeding, vomiting, low energy).
Follow-up testing on blood and urine need to be done to confirm the diagnosis and should be done whether or not the child has symptoms.
Some children with a positive newborn screening test for SCADD may end up having a different condition. The doctor should test the child for signs of these other conditions: Isobutyryl-CoA dehydrogenase (IBDH) deficiency (also referred to as isobutyrylglycinuria (IBG)) and Ethylmalonic encephalopathy (EE).

Infants and children with SCADD will typically not show symptoms when they are healthy and eating regularly. However, when they are not able to eat enough calories in the form of sugar and their bodies attempt to burn fat for energy, some people with SCADD can become sick. So anything that prevents someone with SCADD from getting enough calories from sugars in foods might cause them to get symptoms.
The common triggers are:

It is very rare for a child to die from SCADD.
If a child does die of SCADD, grief support is available through the FOD support group at https://fodsupport.org/grief.
A grief support brochure is available at https://fodsupport.org/documents/Jan2019GriefConsultbrochure.pdf.

Most US states include SCADD in their newborn screening programs. An abnormal newborn screening result does not provide a diagnosis without additional testing.
You can check to see if your state provides newborn screening for SCADD at this site http://www.babysfirsttest.org/newborn-screening/conditions/short-chain-acyl-coa-dehydrogenase-deficiency

There are 3 major kinds of testing for SCADD.
Newborn screening is done by testing for partially broken down fats (acylcarnitines) on a dried blood spot. Unusual levels of these acylcarnitines mean that more testing should be done and the child should be evaluated to make sure they do not have any symptoms. An abnormal newborn screening results does not give a diagnosis of the condition.
Testing to confirm the diagnosis and determine the severity is done in different ways. Tests on samples of blood and urine will show if there are high levels of partially broken down fatty acids.
Genetic testing can also be done to look for changes (mutations) in the gene called ACADS which makes the SCAD protein. Testing is often organized through your main doctor. However, primary doctors often refer their patients to medical geneticists and genetic counselors for testing. Genetic counselors can serve as resources for people wanted to learn more about testing for SCAD.
A medical geneticist can be found by asking your doctor for a referral or looking on the American College of Medical Geneticists website. Genetic counselors can be found on the National Society of Genetic Counselors website.

There are researchers doing clinical research on Fatty Acid Oxydation Disorders. SCADD is one type of Fatty Acid Oxydation Disorder. This research includes studies to better understand how the body metabolizes (breaks down or burns) fatty acids, other kinds of fats, and other sources of energy. Some studies look at which forms of calorie supplements help people with SCADD the most.

Current clinical research for SCADD can be found by talking to your metabolic specialist or looking for studies at:

Newly diagnosed babies and individuals with the more severe forms of SCADD should avoid going a long time without eating. They may need to eat more frequently when they are sick or when they are under extra stress.
In addition to eating regularly, some individuals may benefit from a diet low in fat and high in carbohydrates and proteins.
Several other treatments have been tried for children and adults experiencing symptoms from SCADD. These include treatment with carnitine (a protein that helps the body burn fat for energy) and riboflavin/Vitamin B2 (a vitamin that helps the SCAD protein break down fats). Thus far, it is not clear if these treatments are actually helpful or who might benefit from them.
People experiencing a metabolic crisis, which includes problems eating, low muscle tone, vomiting, low energy, lethargy (extreme sleepiness), and seizures, should be treated with intravenous (IV) glucose, a form of sugar that can be burned for energy.
Since many people with SCADD will never develop symptoms, there may be no treatment necessary. As children with SCADD grow older, it will become more clear whether or not they need treatment.

To find a metabolic dietitian specializing in diets for people with SCADD, visit the GMDI GMDI Find a Metabolic Dietitian webpage

People with later onset SCADD should pay attention to their symptoms and avoid exercise which causes them to have symptoms. They may also benefit from eating regularly and having a diet low in fat and high in carbohydrates and proteins.
They should talk to their metabolic doctor about the risks and benefits of treatment with carnitine (a protein that helps the body burn fat for energy) and riboflavin or Vitamin B2, (a vitamin that helps the SCAD protein break down fats).

To find a metabolic dietitian specializing in diets for people with SCADD, visit the GMDI GMDI Find a Metabolic Dietitian webpage

The way SCADD is inherited is called "autosomal recessive." This means that to be affected, a person must have a mistake (mutation) in both copies of the ACADS gene in each cell. Each person has two copies of the ACADS gene. One of these copies comes from the mother in the egg and the other copy comes from the father in the sperm. The parents of a child with SCADD usually each carry one copy of the gene with a mutation. The parents are referred to as carriers. Carriers typically do not show signs or symptoms of the condition. When two carriers of an autosomal recessive condition have children, each child has a 25% (1 in 4) chance to have the condition, a 50% (1 in 2) chance to be a carrier like each of the parents, and a 25% chance to not have the condition and not be a carrier. A genetic counselor can help you understand more about the inheritance of SCADD and who else in the family might be at risk to be affected or have an affected child. Genetic counselors can be found on the National Society of Genetic Counselors website.
Learn more about autosomal recessive inheritance from the Centre for Genetics Education.

Most newborn screening programs test for SCADD. You can check to see if your state provides newborn screening for SCADD at this site http://www.babysfirsttest.org/newborn-screening/conditions/short-chain-acyl-coa-dehydrogenase-deficiency
A child with an abnormal newborn screen for SCADD or children who show symptoms of SCADD will have specialized tests done to confirm the diagnosis. Analysis of acylcarnitine levels in blood and acylglycines or organic acids in urine will show if there are high levels of incompletely broken down short chain fatty acids.
Genetic testing for changes (mutations) in the ACADS gene can confirm the diagnosis. ACADS gene sequencing is offered by many labs.
A diagnosis of SCADD is made through a combination of blood and urine tests as well as genetic testing. An abnormal newborn screening result does not provide a diagnosis without additional testing.

If you or your child would benefit from an emergency protocol letter, your metabolic geneticist should write the letter. The letter should be reviewed and updated at each visit and after any illness that requires treatment or hospitalization. Each time the letter is updated, make sure to any destroy previous copies of the letter and replace them with the new version.

Current clinical research for SCADD can be found at:

People with SCADD should be seen by a doctor familiar with metabolic genetic disorders. The best way to find a center that specializes in metabolic disease is to search for a "Metabolic Genetics" clinic or program. Here are some sites that will help you find a metabolic genetics clinic near you.

The genetic mutations that cause SCADD are estimated to occur in between 1 in 35,000 to 1 in 85,000 people.

Most people diagnosed with SCADD never develop symptoms.

Most people with SCADD do not have learning problems or disability.
In some cases learning problems and disability can also be prevented by being aware of the diagnosis and getting immediate treatment if a child shows signs of a metabolic crisis.
However, even with treatment, some children with SCADD do develop learning problems, hyperactivity, and developmental delays. Some of these children may improve when they are treated with a low fat, high carbohydrate diet and eating regularly.

Most children with SCADD are healthy even without treatment.
Those children with SCADD who have symptoms will benefit from with proper treatment. A child with SCADD can grow up to be healthy. Newborn screening and early diagnosis can help prevent complications. It is important that parents and caregivers are aware of the risks of metabolic crisis when a child goes a long time without eating or has increased calorie needs (uses extra energy, such as while fighting an infection).

Other names for Short-Chain Acyl-Coenzyme A Dehydrogenase Deficiency include:

There are support groups for people with SCADD. Two groups which are familiar with SCADD are:

The Fatty Acid Oxydation Disorder Family Support Group.
and
United Mitochondrial Disease Foundation.

SCADD affects people differently. Most children and adults with SCADD never have any symptoms.
Others have very mild symptoms or only develop symptoms when they have another condition that puts extra stress on their bodies.
Some infants and children with SCADD have serious symptoms such as growth and developmental delays, low blood sugar, and seizures.
Another form of SCADD is only found in adults. The adult form of SCADD mainly affects the muscles. It can cause muscle pain and weakness. Adults with SCADD may also have nausea, vomiting, and shortness of breath. The muscle problems often get worse after strenuous exercise.
Everyone with SCADD has mutations (changes) in the same gene. The gene is called ACADS. This gene provides the instructions for making the enzyme, or protein, called "short acyl-coenzyme A dehydrogenase," or "SCAD" which breaks down fat for energy. Different mutations in the gene cause different problems in the enzyme. Some mutations stop the enzyme from working at all and others just slow it down. The different types of SCADD can by partially explained by the different types of mutations since people with mutations that just slow the enzyme down are still able to break down some short chain fats while people with mutations that stop the enzyme from working at all are not able to to break down any. But there seem to be other factors, perhaps other genes or other illnesses, that also affect whether a person with SCADD will show symptoms. Researchers are working to understand these differences better.

Most people with SCADD will be able to live normal lives without restrictions.
However, those people with SCADD who have had symptoms or are at risk for symptoms may need to avoid the following situations: