Rare Conditions and/or illnesses

[AZCEP]

Excellent re-interpretation of what was attempted to be delivered.

[spenac]

Man Dust wish someone would tell my OB's they were supposed to wait for hospital. HaHa. But sadly your right so much of what we are educated on are rare in the field. Seems from comments on this site that depending where you are as to what you see and do often.

Now for what many have not heard of but is actually a fairly common problem celiac disease. It can present with patients sick to there stomach, malnourished but claiming to eat healthy and ample food, can be deadly. In the field if they don't know they have it we probably wont figure it out. Sadly many doctors don't figure it out for even many years and patients get wrong treatments and just keep being sick. It is actually better understood and treated in other countrys than here in the USA. But the USA is slowly catching up. Celiac disease patients cannot have anything with gluten, the most common gluten product is wheat but also found in many other grains. The reaction to the gluten in short actually causes the patient to not be able to absorb the nutrients from the foods the eat. Lot more to it but one that is worth looking into. Many other illnesses and conditions are aggravated by it. Look into it you might find you could benefit by trying gluten free diet.

[paraloco]

I've had 3 patients in 20 years with a dissecting aortic aneursym. I've had 2 with a dissecting splenic artery aneurysm ( an ER doc told me that the typical ER physician sees 2 of those his/her entire career. It presents similar to AAA, just not as severe). I've had 1 guy bleeding out thru esophageal varices ( place looked like something out of a splatter film) I've seen 1 guy blown up like the Michelin man with sub-q emphysema. In all the wrecks I've worked, 1 man had a blow-out hip fracture. 1 LeFort III fracture. 2 V-tach with a pulse that I had to cardiovert in the field. I've seen 1 or two of Almost everything. no presenting limbs or cord yet

[tinyemt]

I have been in ems for about 6 years now and I had a grandson born a year ago that was born with a condition that will take his life by the age of two and he just turned 1. the condition is called Miller-Dieker Syndrome I hope you look this up and see whats its about...What i can tell you because I deal with him each day is that he has seizures everyday 5 or 6 he is on 2 seizure meds and other meds to keep him relaxed he doesnt swallow he is fed thru a feeding tube in his tummy all meds are put thru the tube he has more fluid than brain and the out come is death no matter what we have hospice to help but time is now short he has made it to his first birthday and has been taken back to the hospital for comfort care only....He will come home when he can be off the 02 for 24 hours its hard having to take him alot in the ambulance but i wouldnt have it any other way...so we have had to train all the services close to us on what to do for him and how to do his meds thru the tube and the whole nine yards..anyways just thought i would add my tow cents worth... Tiny Emt

[WendyT]

The reason I became an EMR was the fact my Dad had a terminal illness, was on O2 for the last few years of his life, he had Kennedy's disease, this illness is quite like Lou's, but this rare condition slowly kills you and Lou's can take you quick enough before you can sneeze. My Dad has since passed away (2003). www.kennedysdisease.com

My Mother is also terminal, she has Frontal Temporal Dementia and an Aortic aneurysm, she lives in a nursing home now.

I quit my job working in a private school, to take care of my Dad until he passed away, the 3 last remaining yrs was for my mother, until it was evident that she needed nursing care.

I was their caregiver, I am a calm person, things go haywire and most ppl react, I dont, I take it slow because getting excited doesnt help the pt or the family in question.

tc/ss

[spenac]

I have been in ems for about 6 years now and I had a grandson born a year ago that was born with a condition that will take his life by the age of two and he just turned 1. the condition is called Miller-Dieker Syndrome I hope you look this up and see whats its about...What i can tell you because I deal with him each day is that he has seizures everyday 5 or 6 he is on 2 seizure meds and other meds to keep him relaxed he doesnt swallow he is fed thru a feeding tube in his tummy all meds are put thru the tube he has more fluid than brain and the out come is death no matter what we have hospice to help but time is now short he has made it to his first birthday and has been taken back to the hospital for comfort care only....He will come home when he can be off the 02 for 24 hours its hard having to take him alot in the ambulance but i wouldnt have it any other way...so we have had to train all the services close to us on what to do for him and how to do his meds thru the tube and the whole nine yards..anyways just thought i would add my tow cents worth... Tiny Emt

Our thoughts are with you, your family and especially your grandson. Rev 21:4

[AZCEP]

From the brief reading I've done in it, your situation is near terrifying.

I do not want to sound cruel, or uncaring, but the concerns of EMS providers would be to manage the symptoms as they present. I've come across many cases of near terminal patients that the family had so much more information than I did, or do. I will ask the family what works best for the situation at hand, and allow the family to help if they are able.

It can be very easy to drown in the details, when all that is needed is an open mind/heart.

[ScottRosman]

Gillian-barre is pretty rare, and scary if you don't know what your seeing. In this disorder there is a probable autoimmune response in the brian causing ascending paralysis. Look it up online, prob wont be in your emt books.

[kkidfall]

Try looking up Actue Porphyria. Thats another very rare one and very interesting one. There are a ton of drugs you can not give this patient and they all act differently on the Pt. The only reason I know about this one is because I myself was Dx. with it. Yet it is still very interesting to learn all about it and other rare disorders.