Annie's Adrenal Crisis

"Those who don't know history are destined to repeat it." Edmund Burke

In light of those words of wisdom, let me tell you Annie's story again. My thought is that if you or someone you know ever shows symptoms like Annie had, you will run to the doctor--preferably a diligent endocrinologist--and avoid the tragedy that happened to us.

Six years ago today, on January 21, 2007, my three and a half year old daughter, Annie, suffered an adrenal crisis that resulted in a severe, hypoxic brain injury. We put her to bed with a little cold, and the next morning we found her blue, eyes staring straight ahead, teeth clenched, and arms pulled up to her chest. She was in an on-going seizure after her blood pressure dropped and her blood sugar had dropped, causing her to go into cardiovascular collapse.

In the year prior, beginning in January 2006, she had had multiple episodes of dehydration, stomach pain, nausea and vomiting. She had been hospitalized for three days, we had taken her into the ER three times, and to the doctor many times in between. No one diagnosed her with Addison's disease, or adrenal insufficiency. No one referred us to an endocrinologist.

She took three hour naps. She was thin. She craved salty Goldfish, pepperoni, and pizza. She also began to be fearful of little things like walking down steps alone--things she had previously been doing fine by herself. And her skin got progressively darker until she had a tan that prompted a friend to start calling her "Malibu Barbie."

Then one night in January I put her to bed with a cold--and she almost died as she slept.

Addison's Disease is a disease of the adrenal glands, and results in adrenal insufficiency, or AI. AI can also be caused by secondary problems such as tumors of the pituitary gland, or adrenal glands, or injury. The adrenal glands produce cortisol, which is necessary for your body to fight illness and stress. If your adrenal glands don't work, you are at risk of an adrenal crisis--a life-threatening event.

The treatment for Addison's, or adrenal insufficiency is simple: hydrocortisone tablets, usually taken three times a day, to mimic the way our adrenal glands supply our bodies with cortisol. During times of illness or stress, the dose is increased double or triple to mimic what the body does naturally to fight off infection. In times of crisis, an injection of liquid cortisol (Solu-Cortef) is given.

Annie was saved from dying that morning, but not until after she had already sustained a catastrophic brain injury. She lived for four years without ever regaining the ability to walk independently, say more than 5 words, or eat. And her brain function went from precocious 3 1/2 year old to infant--overnight. Annie passed away on March 25, 2011 of complications of the flu. We grieve the loss of that blond-haired, pink-bowed sassy little girl, but are continually comforted that we will see her again in heaven soon.

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What does this all mean for you?

If you or someone you know has weakness, or gastrointestinal symptoms such as nausea, vomiting, weight loss, dehydration, and has unexplained darkening of skin color--think adrenal insufficiency. Adrenal insufficiency can develop at any age--young children, teens, adults--boys, girls, men or women. Get to a doctor--an endocrinologist--and insist on a simple cortisol test. It could save your life!

If you are a parent of a child diagnosed with adrenal insufficiency:

1. Be diligent in times of stress or illness. Trust your gut--if your child looks or acts the least bit sick, assume they need a stress dose of hydrocortisone.

2. Train family members, caregivers, teachers, and school nurses on stress-dosing and giving the emergency injection. Train them on recognizing the subtle signs that your child needs more hydrocortisone. Train them on what an adrenal crisis looks like for your child, and what may cause it.

3. Learn as I did that calling 911 is not a substitute for giving the emergency injection in a crisis. Driving to the ER is not a substitute for giving the injection. Every second counts. Get over your fear and queasiness and give the injection first and then go get help.

4. Join our Facebook group Parental Support for Adrenal Insufficient Children or see our Facebook page "Cupcakes for Annie"  and get support from other parents.

5. Finally--Read, read, read about AI. Learn about the subtleties of your child's brand of AI. You will become the expert on your kid. Be a bulldog advocate for them. Don't be pushed around by anyone who minimizes or brushes off what you know to be true.

Remember to learn from my history--Annie's history--and recognize the signs of adrenal insufficiency. If her story saves one life, it helps to redeem our loss.

Jean