Friday, November 30, 2007


Panhypopituitarism is the technical term for a "boat load of medication".....

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....

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."

Thursday, November 29, 2007

What is Autism?

Hell if I know but it beats the crap out of me sometimes...

This morning Autism woke up at 0400 to take a bath while everyone slept.

When it gets sick, it doesn't know how to deal with the strange feelings that come along with illness, so it spins, has labored breathing and juts it's hand into the air. Autism doesn't sleep when it's sick and the early signs of illness onset are these physical characteristics. When the physical symptoms are present, my first thought is "oh shit" and my response is bracing myself for 3 weeks of spontaneous screaming, no sleep or inconsistent sleep.

Thankfully, my guy isn't sick today....just a little more Autistic than usual.

The best part of being Miguel's mom is that any tiny achievement, even if it only happens once and never again, is MONUMENTAL!!!! Things that others take for granted are cherished in my life and anyone who really knows Miguel can relate to the average occurance that feels like the Heavens opened up and blessed me with the largest damn miracle anyone has ever witnessed!! These "miracles" (e.g. a word or phrase used at an appropriate time, whether, coincidence or not) usually are, in fact, coincidence but that doesn't stop us from hoping that the vocabulary or behavior "sticks".

Prior to the onset of Autism, Miguel would sing songs, say his ABC's, use little phrases and eat regular foods. After Autism, he'd go mute for weeks, eat only one type of food and become aggressive (I believe that is due to his inability to communicate effectively). He is now 10 years old (eeewwwww.....that's a reality check for me....) and I'll talk about recent events tomorrow. Life calls.

Newest development:

Miguel brings me his plate from the table when he is done eating. :)

"My crown is called content, a crown that seldom kings enjoy."

--William Shakespeare

Wednesday, November 28, 2007

Can you hear me? How about now? Can you hear me now? Hello?

*image from*
I started reading my friend's blogs, which inspired me to do my own partially as a connection to my friends and family across the world, partially as an outlet or diary of Miguel's progress and, hopefully, as a means of networking with other parents that share my joy and my heartache as a parent of a very unique and special child.

With that said, this is actually my son's blog because I am really not that interesting of a person to blog about until you attach my parenting experiences because those are RICULOUSLY interesting and sometimes, just plain RIDICULOUS!!!!! I have my own identity but, let's face it, in larger circles I am not known as "Kelly" but more commonly known as "Miguel's mom", "Jason's sister", "Jose's ex", "Lois' daughter" or "the mother of the blind/Autistic boy". So this is where my blogging journey will begin.....let's see how long my blog attempt lasts....


Newest development:
I point to Miguel's stomach and ask, "what is this?" He repeats, "what is this?" I say, "it's the Buddha." He repeats, "the Buddha."
What a joy?