Emergency Protocol Letters

URGENT Info for Emergency Room Personnel and others:

ER LetterWhen FOD Families call 911 or come into an ER please FOLLOW the EMERGENCY PROTOCOL LETTER IMMEDIATELY that their specialist has given them and LISTEN to the PARENTS or FOD Adult ! We are having some of our Families thrust into bereavement all because someone CHOOSES to BLATANTLY DISREGARD the Protocol and send Families home because their child/adult 'looks' okay or they think the blood sugar is sufficient [FOD children/adults can often present with symptoms even when the BS level is in the 70s and 80s].  DO NOT ASSUME you know how to treat FODs, especially if you have never treated an FOD individual in crisis ~ it is NOT treated like diabetes.

FOLLOW THE PROTOCOL that their specialist has individualized specifically for them!

**Why Emergency Protocols are NEEDED and why they NEED to be followed by Chuck Hehmeyer, practicing attorney

[From our FOD Experts] A plasma glucose in the "normal range" does not mean it is safe to skip a D10 bolus if a medical protocol instructs that a bolus is necessary. When a patient is ill, some FODs require a glucose infusion even in the face of a glucose level that is normal or near normal as toxic metabolites can still accumulate.  Sometimes only a glucose bolus will reset the metabolic "thermostat" which regulates breakdown of endogenous (stored) fat. If a physician has concerns about a glucose bolus for a sick FOD patient based on a normal/near normal plasma glucose level, the answer is NOT to ignore the protocol. The patient's treating metabolic physician must be consulted immediately or, if unavailable, another metabolic physician should be paged. For many FODs, it is much easier to deal with transient hyperglycemia than the consequences of continued decompensation.

Note: Specialists also advise to Avoid fat binding/producing anesthetics, lactated ringers, long term use of steroids, and products that contain aspirin or salicylates. These can cause possible complications.

Anesthesia Concerns: Propofol Infusion Syndrome
Anesthesia Concerns: Refer to umdf.org (recommended reading)

Emergency Protocol Letter Examples

MCAD Letter for Infants & Children (PDF)
MCAD Letter for Teens & Adults (PDF)
LCHAD version 1 (PDF)
LCHAD version 2 (PDF)
VLCAD version 1 (PDF)
VLCAD version 2 (PDF)
Unclassified FOD (PDF)
New England Consortium of Metabolic Programs (various FOD protocols)

Please be aware that the above Protocol Letters are just EXAMPLES that some of our Families have shared with our Group. It is important that you INDIVIDUALIZE your/your child's protocol sheet in conjunction with your physicians and other professionals. Please also refer to the URGENT INFO posted above for Emergency Room personnel.

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