Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.




Tuesday, January 17, 2017

The Mad Scientists of the Parenting World

I have discovered that special needs parenting 
is all about the science.

It's about
research
ideas
experimentation

It's about
controlling variables
designing formulas
and going back to the drawing board

It's about being fearless and perhaps even a little bit crazy.

But mostly it's about
convincing others to believe
what you have discovered.

Yes, special needs parents are indeed
the mad scientists
of the parenting world.

"Nothing in life is to be feared; it is only to be understood."
Madame Curie

Curiously, I am engaged in experimentation with both of my children.

Let's start with Weston, who began his 45-day evaluation at his new school. The good news is he loves it there. The bad news is that during this transition, his longtime psychiatrist resigned. He is now seeing a new one.

During our first few visits with her, we described Weston's journey navigating the waters of medication management. This involved trials of many different medications in an effort to help Weston find relief from symptoms of anxiety, depression and ADHD. Previous dosing methodology however, was to try meds that were effective on other children diagnosed with similar disabilities. This was not always effective for Weston since it did not take in to account his unique rate of metabolism and genetic make-up.


His new psychiatrist decided to try a new technique called genetic pharmacological testing. She took a saliva swab from inside his cheek and sent it off to a specialized genetic lab who coded his DNA/genetic make-up and provided us with a list of medications, that, based upon Weston's genes would perform most effectively. It also detailed the proper dosing for each medication, taking the guesswork out of prescription management.

Armed with this new and important information, she began a new medication trial, eliminating some existing meds and adding some new ones with the long-term goal of treating Weston safely and effectively.

Since it involved the changing of meds, Weston did not feel safe doing this at home/school and requested that he be hospitalized to ensure his success. I am proud of him for having the courage to know what he needs.

So, while Weston is evaluating a new method for medication management in one hospital, the other son is headed to Children's Hospital in Boston tomorrow for a surgical evaluation of his on-going GI issues.

Which btw, is another important family celebration day....Nick's birthday.

Would you expect anything less from us?

Anyway, the surgery we are considering for Nicholas is a new procedure designed for the treatment of children with poor gut motility issues. It is called an appendicostomy. This surgery attaches the appendix (on the inside of the body) to the belly button (on the outside)and forms an access port much like a g-tube button. This port can be used to attach a catheter that can flush out the intestine, creating a new and easily accessible area to administer an enema. Intestinal flushing can also improve the ability of a lazy colon so it may begin to perform better.

For more information on what's called the Malone Procedure, click here.

Results of Nick's GI motility study showed a delay in movement as well as a period of central nervous system confusion. This is when the CNS mixes up its signals to the intestine. As a result, stool is not moved in a continuous manner and can become backed-up or stagnant. Stagnant stool is a bad thing for the body since bacteria can form. A build up of stool is also dangerous since it can create an intestinal blockage or a rupture which is a life threatening situation.

We are visiting the surgeon tomorrow to discuss the advantages and disadvantages of performing this kind of operation and to answer our long list of important questions. If we decide to go ahead with the procedure, we will schedule a date for surgery.

Since there is so much going on with both children,
I have begun to keep a lab notebook for each of them.

What did I tell ya?


Mad Scientist or what?

I will keep y'all posted

She Blinded Me With Science
Thomas Dolby

It's poetry in motion
She turned her tender eyes to me
As deep as any ocean
As sweet as any harmony
Mm, but she blinded me with science
"She blinded me with science!"
...