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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.

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

• Your/your child's name and date of birth
• A brief summary of your child's medical history
• A statement that the child has SCADD and a brief explanation of the condition
• A statement that the parents are familiar with their child's condition and their symptoms and a statement that the healthcare provider should include the parents' input in all treatment decisions
• Specific instructions for testing and treatment when your child has symptoms that may put them at risk for dangerously low blood sugar levels. These instructions will be unique to your child
• Your metabolic geneticist's emergency phone (which should be available 24 hours a day, 7 days a week) and your primary physician's phone number
• Your doctor's signature

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.

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.

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:

• Going long periods without food
• Becoming dehydrated
• High fat diets

Discuss with your doctor whether these situations apply to you or your child.

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.

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:

• Infection
• Stress
• Weaning from nighttime feeding (such as when a baby starts to sleep through the night without eating)
• Preparing for or during surgery
• Dehydration
• Fever

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).