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.




Saturday, February 15, 2014

Nasty Weather and Mystery Illnesses

What is it about my children and cataclysmic weather events?

You may recall our harrowing drive through Hurricane Sandy to seek an answer to Nick's swollen gland issue?  Well this time dear readers, it's all about Weston. Yes, during the height of Winter Storm Pax, a furious ice, sleet and rain storm of epic proportions, yours truly was transporting the ailing boy to an important gastrointestinal appointment.

 
Welcome to: The Lisa Train
 
Poor Weston has been struggling with chronic diarrhea issues. Last summer you may remember we visited with our GI doc at Children's Hospital. She performed blood tests, physical exams and a colonoscopy/endoscopy. The end result of all this testing seemed to indicate a propensity for Irritable Bowel Syndrome, a condition often associated with children diagnosed with autism. Weston was put on an antibiotic to calm his intestinal tract and prescribed fiber pills to help build bulk.
 
Weston did well on the antibiotic/fiber program but Dr Fishman explained that he cannot be on the antibiotic long term. We stopped this medication in December. Since then, his diarrhea has returned with a vengeance. He is fatigued and pale-looking. When he stepped on the scale he had lost a staggering 11 pounds.
 
Weston's peaked appearance frightened me. I called for the first available appointment with Dr. Fishman. The only opening was on Thursday at the height of the storm. I looked at Weston and decided to risk it.
 
So, on Thursday, while most folks were riding out the storm at home, we were making our way slowly to Children's Hospital North.
 
The 20 minute drive took us well over an hour.
 
 
When we arrived for our appointment, Dr. Fishman was disturbed by Weston's appearance and weight loss. She performed a blood test to check his liver functioning and performed a physical exam where she felt a hardened stool that seemed to be blocking his intestine.
 
She explained that she suspected a few possible culprits for Weston's issues. Either he had inflammation, a malabsorption issue or a possible intestinal infection. Blood tests would tell her more.
 
She prescribed a weekend bowel clean out, then a resuming of the antibiotic/fiber regimen.We scheduled another visit for next month.
 
When we finally exited the doctor's office, the storm was raging. Roads were snow covered and icy. The wind had started to pick up. As we made our way north up the highway, we saw three separate accidents on the opposite side of the highway. Each vehicle had spun out on the icy roads. One, had ended up over an embankment looking something like this (not my photo)
 
 
 
The 4 lane highway had narrowed to only one drivable lane.
 
I was terrified but put myself in that Special Needs Warrior Mother Mode and continued on slowly in a trance-like, highly-focused driving state until we arrived home safely.
 
I am thankful that we made it, but even more grateful for this week's February vacation.
 
We need the rest. 
 
Will keep you posted on Weston's results.