Showing posts with label medications. Show all posts
Showing posts with label medications. Show all posts

Monday, February 4, 2008

Medication update...

SATURDAY


As scheduled, Saturday started at 0530-ish. Miguel and I were up and ready for a road trip to New Braunfels to watch Uncle Jason race for the first time this season. Per my last blog, I was going to "fiddle" with the Clonidine a bit because it wasn't doing what I had intended it to do. In fact, it was doing the oppposite by waking him up earlier and in a spastic, "punchy" sort of mood.

Last week, I tried going back to the 1 Clonidine at night, instead of 2, which had him sleep through the night BUT he was HELLFIRE during the day.

Saturday, per the prescription of giving 2 Clonidine, I gave one at night and one in the morning. Which KNOCKED MIGUEL OUT by 0710!!!! (See him in the back...)







I find this to be nothing less than HILARIOUS because it takes an elephant tranquilizer to even slow him down. LMAO!!!!






Back in December, when I considered giving him away or shippping him to China, I thought "it'd be great to have a tranquilizer gun for Miguel when the meltdowns occurred" because it is like experiencing pure evil when this boy meltsdown.









Needless to say, the 1 Clonidine in the morning is completely unnecessary.








Oh, I was caught taking pictures while navigating Uncle Jason's car.....back to business. :)
The rest of the day Saturday, Miguel was difficult to manage...he walked out on to the race course at one point.
Psst...great job single mom! Way to mind the boy! I am sure I made the 9 o'clock single mom news, on how irresponsible we can be. Not my finest hour.
By 1500, Miguel was more than ready to leave. He was screaming and whipping himself in the head with his cane, which is a friendly reminder that he has had enough for the day.
We went to eat at Chili's, where Miguel scared the crap out of the patrons with his screaming, crying and headbutting of the table. Gosh, it's moments like these I could trade for multiple root canals without anestesia.
After we were in the car for about 10 minutes, the crying and screaming stopped. We slept hard through the night and Sunday I tried splitting the Clonidine in half.
It was still too strong for him. He was also screaming and fussing a lot on Sunday. We almost didn't make it to church and I am lucky we were able to make it to the grocery store.
This morning, I tried giving the extra pill of Risperdal and 86-ing the idea of 2 Clonidine. Miguel was up a little after 0400 today. He wet the bed. He did on Saturday, too.
Miguel was fussy today but manageable.
I'll try the extra Risperdal tomorrow morning, too.
The beauty of behavioral meds is that they have different effects on different people. Sometimes it's the matter of time of administration or halfing a dose, as long as you work within the prescribed dose. Behavioral meds have to be "tweaked" to suit each individual.
As for today, I started calling around to a couple of possible placements....which all have waiting lists and criteria for placement....I'm hopeful, though.
"Faith has to do with things that are not seen and hope with things that are not at hand."
--Saint Thomas Aquinas

Friday, November 30, 2007

Panhypo-what?

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....

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."