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What is an emergency protocol letter for SCADD?

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.

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