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 Janet Meehan, Panhypopituitarism/ Tumors Division Consultant
Hi, for those of you who don't know me, I live in Florida with my husband Tom and our three children - Connor (age 13), Shea (age 10), and Kelly (age 9). I work full time for an Insurance Group in the workers' compensation division. When our son 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, but at his six week checkup, it was clear there was a problem due to his 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.
Then when he was 12 weeks old and just starting to sleep through the night, he woke up one morning very gray in color, breathing poorly, and extremely lethargic. His pediatrician had us take him to the ER. His blood sugar was 22 and his body temperature was 94, and shortly after we got there, he began seizing and stopped breathing. They resuscitated him, placed him on life support, and started over in trying to diagnose him.
After a spinal tap ruled out meningitis, and after a blood transfusion because his sat rates were so poor, he was finally diagnosed with panpit following an MRI of his brain, which showed a malformed pituitary gland. Two more weeks in PICU on a ventilator, and he came home with us, where we started giving him Synthroid, Cortef, and nightly growth hormone injections. Over the years he has crashed quite a few times for various reasons, we've gotten used to giving the emergency Solucortef shot, and we've learned a lot along the way. But the crashes have come fewer and farther between.
We moved to Florida in 2000, and today Shea is a healthy, happy fourth grader who is in the 60th percentile for height. He is energetic, athletic, well-adjusted, and very outgoing. He plays soccer, loves riding his Ripstick skateboard, and adores his Wii video games. Those who meet him would never know he has a life threatening
condition.
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. When MAGIC asked me to be the division consultant along with Kim, I was honored.
I've recently talked to a couple of parents with newly diagnosed children, and it is nice to be able to give back some of the support and knowledge that I've been given and learned over the years. One new mother I just talked to has a child diagnosed three months ago, yet wasn't even given a script for Solucortef, much less told that she needs to have it on hand at all times and how to use it, and that it may very well save her 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!
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