Mitochondrial Diseases Support Group

Been there! Done that! (and I have the battle scars to prove it too) I took my wife soooo many times to the E.R. only to leave knowing what I knew before I took her there. I would of been better off taking her to some guy off the street. The ususal answers I got after I explained the disease to the E.R. Doctors was go see your own Doctor. I can so relate to your frustrations!

I have recently been given a letter from my daughters geneticist to give to ER dept. That way they know what type of IV fluids to use, what tests to run, and what to avoid if anestetia is needed. Then if we need further treatment we are transfered to the childrens hospital where all the specialists are.

I've experienced this many times with my children, in many emergency rooms, and it's something that shouldn't have to happen.

When anyone with mitochondrial disease enters an ER for medical care, nine times out of ten it sets the stage for an ego battle. The majority of doctors lack the needed knowledge and experience when it comes to recognizing or providing treatment to a patient with mitochondrial disease. When they're faced with providing emergency care to a person with rare disorder for situation that could be life threatening, they don't know what to do. Some doctors appreciate information provided by the patient or the patient's family and will follow their guidance; others resent instructions provided by someone without a medical degree.

It's a good idea to always have with you a protocol letter signed by the treating physician. It should state the diagnosis and what needs to be done when certain symptoms are present. In our case, IVs of D5/D10 usually need to be started, but certain labs need to be drawn first so that those results aren't altered by the glucose from the IV (i.e., lactic acid).

The protocol letter should provide all needed information for stabilization, with instructions to then call the treating doctor for further guidance. This, of course, means that the protocol letter must include an emergency contact number for the treating physician.

You shouldn't have problems if you provide a good protocol letter. If you do, call the treating physician yourself, explain the situation, and ask him/her to speak with the ER doctors.

I hope this information is helpful.

View this video. Even doctor had Mito and she had no idea she had Mito for many years.

http://www.youtube.com/watch?v=eLj...