Imparting ‘wisdom’ in the midst of blatant arrogance!

This past winter, my 20-yr-old son, Kevin (MCAD, diagnosed at birth), had one of the most horrendous experiences in his life. Even though there were positive things (Kevin survived!) that came out of this story it was and is very disheartening to learn that after dealing with MCAD for 20 years, we still run in to a few professionals that THINK they know better than my son and what his Emergency Protocol from his FOD Specialist states!

Being the 1st state to mandate expanded NBS, you would think that health professionals in NC would have some idea of the disorders that are mandated. We were both totally amazed that we are STILL running into arrogance, ignorance, and patriarchal behavior on the part of some medical professionals ~ ALL at the expense of my son’s health! To say the least, we did file a medical complaint with the State Medical Board in March [Note: We heard in July 2006 and the Board determined there was no violation of medical practice! Unbelievably wrong! And that was determined ONLY because Kevin did not die!]

To make a long story short, Kevin came home from college to have his wisdom teeth removed. As you all know, having surgery is a stress on a person with an FOD and special precautions MUST be taken. So pre-surgery, we discussed his Protocol with his surgeon and anesthesiologist – also giving each Kevin’s written protocol. The surgeon ‘GOT IT’ (meaning he understood) but the other Dr DIDN’T ~ BIG TIME! We told both that the 10% dextrose IV MUST BE USED BEFORE, DURING, and AFTER SURGERY in order to keep his blood glucose levels above 100 to avoid a metabolic crisis.

Again, to make this short, even as Kevin was being wheeled into the operating room he INSISTED that he was supposed to have the 10% dextrose and NOT 5% ~ the Dr (handling the anesthesia and IVs) told him that 5% should be “sufficient for this situation.” It was our conclusion that this Dr was basing his decision on what diabetics have used during surgery ~ MCAD IS NOT DIABETES! This Dr had NEVER treated someone with MCAD and totally dismissed Kevin, who IS an adult, as well as his MCAD Specialist’s Protocol (which we have used for 20 years!).

This situation is also a lesson in NOT GOING BY BLOOD SUGAR ALONE to determine state of metabolic crisis. Kevin’s glucose was supposed to stay above 100 ~ he came out of surgery at @76 and he FELT LIKE HE WAS DYING physically (nausea, vomiting, total body aches, shaking, headache, etc) and emotionally! Of course, the ‘normal’ low blood sugar level is considered to be @50 ~ but I believe and I know many of you Families that have unfortunately been there too, KNOW those with FODs can’t always go by that. Under stress, Kevin’s protocol states in BOLD letters that he is to be maintained over 100 and he actually does better at 110-120.

Additionally, despite seeing how Kevin reacted to this surgery, they were NOT going to admit him ~ it took 3 CALLS to his specialist (out-of-state) to FINALLY get them to admit him to the ICU. And once he was put on the 10% dextrose IV for a day he ‘turned around’ and felt good enough to go home and finish recovering. To say he least he wanted to get out of there ASAP!

To our knowledge, Kevin survived this experience with no major complications ~ HE WAS LUCKY! Some of our kids and adults aren’t! This also happens all too often in our ERs across the world ~ and we need to address that by continuing to EDUCATE, EDUCATE, EDUCATE!

This situation should NEVER have happened! Patients, no matter what their special circumstances may be, NEED to be assured that established written medical protocols will be followed and that something like this will NEVER happen again. We have a LONG way to go in educating Professionals about FODs ~ but it CAN be done!

[Please also be sure to read Dawn Lobell’s (formerly Dougherty) article about educating medical students in the Medical Update section.]

Deb Lee Gould, Director

deb@fodsupport.org

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