TEXT VERSION OF MY STORY WITH MANY MORE DETAILS

Hi, my name is Janet. I live in Florida and have three children - Connor (age 14), Shea (age 11), and Kelly (age 10). I work full time for a large insurance company in the workers' compensation division.

When Shea was 12 weeks old, he was diagnosed with congenital panhypopituitarism. We were living in Charlotte, NC at the time. He was born a full term, seemingly healthy baby boy. He ate well, slept well, and grew. But at his six week checkup, it was clear there was a problem with prolonged jaundice. Over the next six weeks he underwent a battery of tests, including an open liver biopsy and neurological workups, all of which came back negative. The doctors were stumped and assumed it would eventually just go away on its own.

In November 1998, when Shea was 12 weeks old and had just started sleeping through the night, however, he woke up one morning very gray in color, breathing poorly, and extremely lethargic. Even after sleeping all night, he would not eat. His pediatrician sent us to the ER. They found that his blood sugar was 22, his body temperature was 94, and he was fading fast. Soon after we arrived, he began seizing and stopped breathing completely. They called a Code Blue and everyone came running. After some very scary minutes, they were able to resuscitate him, then placed him on life support, and transported him to a larger hospital and into the PICU. They then started all over in trying to diagnose him.

 After a spinal tap ruled out meningitis, and after receiving a blood transfusion because his sat rates were so poor, he was finally diagnosed with panhypopituitarism. The diagnosis came following an MRI of his brain, which showed a malformed pituitary gland. Two more weeks in PICU on a ventilator, and he came home, where he began getting Synthroid (for thyroid deficiency), Cortef (for cortisol deficiency), and nightly growth hormone injections. Over the years he has 'crashed' quite a few times for various reasons (ear infections, RSV, flu, vomiting). But none have ever been as bad as that day in 1998. We've gotten used to giving the emergency Solucortef shot, and we've learned a lot along the way. Thankfully the crashes have come fewer and farther between as he has gotten older. (As for what happened that day he almost died, turns out he apparently had caught a little cold, but because he was cortisol deficient and not on any meds to compensate, his body could not recover, sending him quickly into the downward spiral.)

My family moved to Florida in 2000, and today Shea is a healthy, happy fifth grader who is in the 60th percentile for height. He is energetic, athletic, well-adjusted, makes good grades, and is very outgoing. He has a lot of friends, loves riding his Ripstick skateboard, is a good swimmer, and adores his Wii and xBox video games. In other words, he's a normal kid, and those who meet him would never know he has a life threatening condition. The only telltale sign is the Medic Alert bracelet he wears. He loves going to the yearly MAGIC conference in Chicago, and has met other children with panpit, some of whom he keeps in touch with around the world. 

Along the way I have met and talked with many parents in the same situation, and have been happy to be able to share the things I have learned. As the PAN Division Consultant for MAGIC, I talk regularly with parents of newly diagnosed children, and it is wonderful to be able to give back some of the support and knowledge that I've been given and learned over the years. Some of the parents I talk to have not even been given a script for Solucortef, much less been told that they need to have it on hand at all times and how to use it, and that it may very well save their child's life at some point.  That's the kind of information that is so important about these children, yet so often I have seen it provided by other parents, rather than emphasized by the physicians.

I truly believe it takes both the medical professionals and the support from other parents to adequately and successfully deal with this very rare condition, and I am happy to be able to be a part of that support group. If you have a child with these issues, please contact me by calling or emailing the national office at: ContactUs@magicfoundation.org or (708) 383-0808 and leave me (Janet) a message. I will get back to you!