Pan- meaning "all", hypo- meaning "lacking" and pituitarism- is regarding the pituitary. So, all of Miguel's pituitary is lacking. It's actually, underdeveloped and ectopic. When the 2 hemispheres of his brain fused together in utero, his pituitary didn't migrate to where it should be (the very center of the brain). Instead, it fell a little short of the desired location and didn't develop fully. The sweet guy takes more medication than a healthy 90 year old man, in order to maintenance his pituitary needs....
To include:Humatrope every night (growth hormone by injection daily)
Cortef 3 times daily (blood sugar)
Synthroid once a day (thyroid)
Now let's explore the Autism portion of the medications.....
In February 2004, we took Miguel to see a neurologist for behavioral and sleep issues related to Autism. There he started on Risperdal for sleep and aggression. It worked well and was worth the risk of side effects...
By October 2004, Miguel had gained 30+ pounds because Risperdal is an anti-psychotic medication which is notable for increasing appetite. Until Risperdal, Miguel's eating habits were nearly non-existant and his range of desired foods was NARROW!!! He ate hot dogs, chips, Chef-Boyardee products, pancakes, apples, grapes, fries and waffles. That is it. Every meal could only consist of those items.
After Risperdal, Miguel ate EVERYTHING (there is no exaggeration here)!!!!! He would raid the refrigerator (and still does) in the middle of the night and tantrum when meals were over. Hence, the enormous gain in weight.
Miguel was diagnosed with Diabetes Insipidus, October 2004, and now takes Desmopressin to manage it but he is still a beefcake. Today, my sweet guy is 4 feet tall and weighs in at 117 pounds!!!!In March 2007, Miguel was started on Clonodine to manage his sleep further. He has an amazing knack for going to sleep at 2230 and waking up at 0200...ready to start his day.
Right now I am awaiting a 3 month supply of Risperdal and Clonidine. I ran out o f Clonidine last week, so waking up at 0400 (like today and yesterday) is becoming a norm until the package of goodies arrives!!! :)
A recap of my medicine cabinet, aka Miguel....
Desmopressin
Risperdal
Clonidine
Humatrope
Cortef
Synthroid
Flintstone multivitamin
Magnesium and Calcium (for teeth grinding)
Vitamin C (for immunity due to compromised immune system)
Fiber Choice tablets (for BM issues)
Melatonin (2mg for sleep)
Some of our most favorite medical heroes include:
Dr. Cydney Fenton-pediatric endocrinologist at Walter Reed Medical Center
Dr. Paola Palma-Sisto- pediatric endocrinologist at Children's Hospital of Wisconsin
Dr. Barbara Trommer- pediatric neurologist at Evanston Northwestern Hospital
RN Kent- pediatrics at Great Lakes Naval Hospital
Dr. Dattani- endocrinologist noted for medical research in panhypopituitarism
Being Miguel's mom today can best be captured in a quote by Casey Stengel,
"All right everyone, line up alphabetically according to your height."
5 comments:
Hi, tell him to hang in there, I was born panhypo with septo-optic dysplasia in 1978, Doc's tested on me and 14 others at UCLA like lab rats. This was back before synthetic GH, they used ground pituitary from cadavers. I'm the only one that survived. Most ended up with brain tumors.
I'm living a normal life, I'm 30, I'm active, happy, and popping meds and still taking the humatrope shots, which he will likely have to do for the rest of his life. It helps keep the pounds off since our metabolisms aren't up to snuff. Tell him to be a trooper, remember to eat every few hours and live a long and happy life!!
Hang in there buddy!
~Harmony
Forgot to tell Mom to hang in there too.. you're an angel...
Very Nice Stuff!!
People who get diagnosed with Panhypopituitarism must immediately consult endocrinologist. Its is very difficult if we consult in advance stages.
Clear description about over weight. Love to see more :)
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