20 April, 2009

Asking for Respite

Here's a sampling of what I just turned in.

In addition to typical Autism symptoms, CP Ataxia and Global Developmental delay, Jake also suffers from two major health issues.

Previous: Pain from unknown source for 9-11 days every 5-6 weeks “episodes” resulting in near loss of sleep, severe agitation, self-injurious behavior and complete non-compliance. Jake also suffered from panic attacks which could blow up into major tantrum/agitation.

Current: Pain has been partially attributed to migraines. Episodes continue to come every 5-6 weeks, duration has been decreased to 5-6 days. Severity seems to have diminished slightly. Reduction in symptoms can be attributed to better use of psychotropic drugs (Zoloft, Valium), better communication between home and school (to identify early symptoms) and use of Maxalt, an anti-migraine drug. Panic attacks have decreased dramatically.
Jake still has severe agitation during episodes which have, in the last six months resulted in injury to both Jake and his caretakers (Aide, Mom and Dad).

Desired Future Outcome:
  • Continue to decrease intensity and duration of episodes.
  • Increase Jake’s communication skills using icons and “talkers” so he can tell us when he is beginning to feel symptoms. The sooner we get the migraine medicine into him the more likely we are to reduce the severity of the episode.
  • Continue use of Zoloft to discourage anxiety and panic attacks. 
  • Continue use of Valium when Jake’s agitation peaks to avoid injury.
  • Continue to use communication book back an forth to school to provide consistent care for Jake. Teacher also phones and texts when she is concerned that he is entering an episode so I can drive to school and administer medicine.
Previous: Inability to sit still in school, unable to calm down for dinner at home. Complete inability to eat in public, difficulty being calm enough to safely be a part of the community. Escaping, physical non-compliance led to (mild but constant) injury of both parents. Use of Adderall was ineffective after 6 months, adding late afternoon short-acting Ritalin had mild success.

Current: Jake now takes 18 milligrams of Concerta which lasts through most of the day without the side-effect of aggression or tears as the medicine wears off. Evening (6-8pm) is still difficult because the medicine is out of his system, but his behavior is more manageable and not as dangerous to himself or others. Camping, hiking or other outdoor activities (including a grocery store parking lot!) which are not safely guarded continue to be a problem; Jake’s hand must be held AT ALL TIMES or he will run away.

Desired Future Outcome:
Continue use of Concerta so Jake is better able to acquire skills at school, and be included more often in after-school, dinner time and evening family and community events.

Use of Respite:

  • grocery shopping
  • dental and medical visits for mom and other child
  • sleep
  • physical therapy
  • laundry
  • gym
  • therapeutic massage
  • date night
  • PTA meetings
  • educational lectures
  • activities for other child (swimming lessons, ballet, art class since Jake is unable to wait during ½ hour classes)
  • sleep
  • coffee with friends
  • car repair
  • banking
  • post office
  • IEP/school meetings
  • library
  • watching mindless television/reading
  • being on the other floor of my house
  • miscellaneous errands

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