Monday, February 21, 2011

Adrenal Crisis

When to give the injection

  • Repeated vomiting (more than once)

  • Repeated episodes of diarrhea (more than 3)

  • Unconsciousness (unable to arouse/wake up)

  • Surgery

If your child becomes unconscious or dazed and mentally foggy whether from a blow to the head or after a period of illness, THIS IS AN EMERGENCY. CALL 911. GET YOUR CHILD TO A HOSPITAL IMMEDIATELY. This condition could be life threatening. Give the injection while you are waiting for help to arrive, then call the child's doctor.
Resource: Judith J. Henry, R.N., M.S.N. in conjunction with the Pediatric Endocrinology Nursing Society, 2004.

Where Will This Bridge Take Us? A mother's anxiety. (By Whitney)

I live by the saying, “Cross that bridge when you get to it.” I am much more comfortable living in the now and find myself all too often getting anxious about the future. I like knowing what to expect, and I am a creature of habit.

Having said that, it probably will not surprise you to know that our days are pretty routine. We get up, June has her pills, we watch Sesame Street, we run an errand, have lunch, June has another pill, she takes a nap, we play and dance to music, greet Daddy at 5:30, we have dinner, read books, then bath time, June takes more pills, and she goes to bed. This is our normal.

In fact, just last week my husband, Tony, came upstairs with her bedtime dose and said, “Wow, I don’t even think about it anymore. It’s just…what we do.” I smiled; my thought exactly.

The next day, I took June to observe a Mother’s Morning Out program. June loves kids and I want to encourage her social development. I also decided I was due a couple of hours to myself once in awhile. She is only a year and a half old, so this is not pre-school, just a program available for younger children to get together for a few hours on the day of my choice. So we decided to check it out before signing up. They play, they have snack, go for walks. Sounds easy enough, right?

What’s that? Oh I forgot…they also get sick! They sneeze, they develop fevers, they throw up. My friends have their children in different programs, and as much as I love hearing about their artwork and new friends, I also can’t hear enough of “all the kids at school are sick right now….he can’t get rid of this cough…he caught the stomach bug…she has a high fever.”

So this little room full of dollhouses, bikes, and building blocks suddenly turned into one huge bubble of ICK! You know in the commercials where they show you the little bubble of ‘this is what is on your kitchen counter’ and show you those little microscopic worms? Well, that dollhouse wasn’t looking so cute anymore!

I started to sweat. I began to tell the director of June’s medical condition and fought back tears. I guess it’s hard saying it out loud. You know-what it really means to be adrenal insufficient.

Other parents may shrug their shoulders when they say, “oh it’s just another cold.” But to us, it is not just a cold. To us, it is watching June like a hawk and feeling her forehead every hour to make sure there is no fever. It is staying up with her until midnight because the extra dose of medication is equivalent to me drinking three Red Bulls for dinner. It is constantly wondering, “is there something else we are missing…what if she spikes a fever in the middle of the night…what if she throws up and needs an injection…”

Oh, the ‘What If’ game! I played this game the whole weekend after visiting Mother’s Morning Out. It was exhausting. I cried, I yelled, I had to stop and catch my breath. The reality of what could happen had come up to the surface and was a little too much for me to bear.

I kept telling myself that June will get sick, and we will have to stress dose, and the hospital is 18 minutes away if we need it. But when she does get sick, my world gets turned upside down because I no longer know what the next day will bring. Our routine gets thrown out the window.

Tony and I know what we are doing (for the most part), and we know what to look for and when June needs more medication. We know what can lead to a crisis. I once could tell that June was getting sick just because she had bad breath the day before! Who else is going to know her like I do??

Like Tony said, this is what we do. It has become our normal, and I like knowing what to expect day after day. But seeing June grow up and preparing her for life outside of our home-of-hygiene sure adds a new dimension to our “normal,” and I just question whether or not I am ready for this step.

I tell myself, “cross that bridge when you get to it,” but now that first little bridge has approached and there is a part of me that would rather jump off than cross it! Well, I can’t hold June hostage forever. I guess I will have to come to terms with our new “normal,” now putting my trust in the hands of other adults, accepting the fact that June will get sick, and embrace the unknown.

I will cross that bridge, I just hope that June holds my hand the whole way!

Friday, February 18, 2011

Hydrocortisone Emergency Kit

After my daughter was diagnosed with adrenal insufficiency, we had several meetings with her pediatric endocrinologist who tried to prepare us for the eventual possibility of an adrenal crisis. We were told the important signs to look for and given the Solu-Cortef injection, aka "the shot".  While I searched for an appropriate container for the shot and associated paraphenalia needed for our emergency kit, my husband acted out the scene from Pulp Fiction where John Travolta's character jabs Uma Thurman's character in the chest with an adrenaline shot. As I systematically emptied drawers looking for a small Rubbermaid container- he rummaged through the desk for a purple sharpie marker. I finally found a not yet used pencil box that fit the Solu-cortef vial, into which he tossed  a black sharpie mentioning that maybe we could get a purple one next time we were at Walmart. Needless to say, the sharpie was removed. It is not needed in the emergency kit. Unless you want to write, Emergency Hydrocortisone Kit on the outside of the container. I did.

Then I spent more days than I care to admit, stressing about the shot. What if I have to give it to her? How do I know when? What if I do it wrong? In my search for the answers, I felt more comfortable as I gathered supplies prepared for the situation. I packed an emergency kit, I familiarized myself with the procedure and most importantly the symptoms leading up to an adrenal crisis.

Usually there are signs before an adrenal crisis strikes. Knowing what signs to look for and having an emergency kit on hand at all times are 2 important steps to dealing with an adrenal crisis when it happens.

  • sudden, penetrating pain in the lower back, abdomen, or legs
  • severe vomiting and diarrhea
  • dehydration
  • low blood pressure
  • loss of consciousness

The most common symptoms of adrenal insufficiency are chronic, worsening fatigue; muscle weakness; loss of appetite; and weight loss. I watch for complaints of headache, nausea and tummy aches, diarrhea, dizziness or confusion. These are flag symptoms for me that something is not quite right. If I notice these in my daughter, I pay close attention to her and keep the emergency kit handy. A lot of times, stress dosing can help prevent adrenal crisis. But sometimes, despite precautions- sicknesses, injuries, and stress can lead to an acute adrenal crisis.

It also occurred to me that all of the symptoms that indicate adrenal crisis could also be attributed to the flu or other illnesses. How do I know? Since illnesses can exacerbate the symptoms of adrenal insufficiency, I decided my best bet was to pay close attention to my daughter's moods and physical health. It helped when her endocrinologist told me that we could not overdose with Hydrocortisone and from there I adopted a better safe than sorry attitude. Adrenal Crisis can be fatal, it helped to know that I wouldn't harm her further by giving her extra Hydrocortison if necessary. If at any time there is severe vomiting, more than two times in an hour- or a loss of consciousness, the injection should be given.


Hydrocortisone Pills
Solu-cortef Vial (prescribed by a physician)
Hand Sanitizing Wipes
Alcohol Wipes
Gauze Pads

Emergency Letter from Physician-
This letter has my daughter's condition, how to treat it in an emergency and her physician's contact information. It is important for travelling with the injection and security checkpoints.

I use a small pencil box, some people use a first aid kit, zipper pouch,  or a tupperware container. The container is less important than the contents and it's most important that it's a size that is portable and easy to carry. I carry extra pill form Hydrocortisone(marked H, because she is also on Fludrocortisone) for days that we are out and about. I try and check my supplies every month or two as the pills and band-aids seem to get used up on a regular basis. I also double check to make sure the vial has not expired (they usually have a couple year life span) and that none of the sterile packages have been ripped open. If they have, I replace them.


Adrenal Crisis as defined by the NIH

Wednesday, February 9, 2011

Adrenal Insufficiency

It's not a diagnosis any parent wants to hear. Adrenal Insufficiency. It's rare. People have no idea what it means and generally haven't heard of it. The assumption is if they haven't heard of it, it can't be too dangerous. The problem with adrenal insufficiency is that a child can go from normal to crisis in a very short amount of time. Some days are normal-ish and others yield roadblock after roadblock. This is a place to share stories, tips and information to help other parents facing similar challenges. We are not doctors, but we have seen quite a lot of them. We can't help diagnose or treat your child, but hopefully we can give you some resources that can help you find someone who can.

Adrenal Insufficiency is treatable. It can be severe. There will be emergencies, but those can be handled with the proper knowledge, awareness, and preparation. If you suspect your child has adrenal insufficiency, it is important to get medical treatment from a licensed physician. 

There are support groups on various sites. There is a group on Facebook called Parents of Adrenal Insufficient Children. There are also forum sites on MDJunction ( for adrenal insufficiency and parents of adrenal insufficient children.