Monday, September 8, 2014

How the Medical System Fails Sick Kids

Notes from my son's illness at this time 3 years ago (see symptom diary from September below). From this, his rheumatologist concluded he had pain amplification and was just imitating me, implied I wanted him to be sick and take medications, and dismissed him from care.

His illness was sudden onset, preceded by a virus.

The medical system fails people. I'll let my notes speak for themselves. Five months between appointments with no treatment is also inadequate.

Rheumatology Appointment: 10/4/11

Goals for appointment:  continue moving toward diagnosis; set treatment goals since his issues are now chronic; notes needed for IEP at school

Symptom updates:
He did not improve a lot over the summer, though he was able to get more rest and could thus do better on a daily basis than he does now during the school year. 

Sleep specialist said it’s taking him a long time to go to sleep but once he does his sleep quality is really good—no obstructive sleep apnea, no disruptions of his sleep.  He said there is one blood test to run if you run other bloodwork (Note: I don't remember what this was, but rheum did not run any more bloodwork).  He believes he probably does have a rheumatologic issue, and that’s what’s creating his need for more sleep.  Says his brain waves/sleep patterns are not characteristic of someone with fibromyalgia.

Psoriasis on inside of elbows (has widened out), heel pain, back pain periodically.  Other joint pain periodically. Extreme fatigue all the time.

Frequently asking for ice packs and heat packs for pain

We always get him up and dressed and ready for school whether or not he can go; he is ready well before school starts, though sometimes he goes back to sleep in his chair while waiting to leave or in the car on the way.  He is sleeping 10-12 hours a night, every night.

Excessive absences due to extreme fatigue à strongly considering homeschooling because his instructional time is so fragmented.

Could not go to pool party/swim park with school friends at end of school year.  He did not have enough energy to do a birthday party this year, though he really wanted to and I would have done anything he wanted for it.  Cannot go on fun outings like arboreteum, outdoor festivals, museums, zoos, shopping, bookstores—everything our family likes to do.

Could not do Scouts in evenings this summer despite not having school because of pain. He loves Scouts.

Continues having the back pain he’s had since 2008 and before, despite shoe inserts now recommended by pediatrician/podiatrist.

Swam at grandparents’ this summer and did some exercises at home; right now, he can barely make it through school day and homework and misses 1-2 days per week.  He is doing makeup work at home and his teachers say he is a dedicated, hardworking, sweet student.

Struggling with PE some days from joint pain, muscle pain, and fatigue.  Difficulty sitting on floor there every day.

Crying on one day from pain this summer.
Autism and the fatigue/pain are like the perfect storm in the mornings and he has difficulty getting into the school building sometimes.  ADD evaluation in September by school shows him to be very low on energy (rates 1 on almost everything, not fidgety at all, good concentration when he’s there)

Symptom diary for 2011-2012 school year:
Most days—has difficulty with pain that interferes with violin practice (wrist, back, or fatigue).  He will practice a few minutes, then stop for 2-3 minutes; extraordinarily difficult for him.  A few times he’s been able to practice an hour a day. He likes to play violin—was one of the top 2 students in his grade last year, received award for practice time.
8/18 – wrist pain severe enough to make him cry
8/22-severe hip pain in morning, limping from it (pointing to hip socket, not rear or SI joints)
8/24 –leg and foot pain—needs ice pack
8/27-crying from pain and fatigue at Abilities Expo, though just sitting in a camping chair; slept on 5 hour drive back that night
8/28-sleep study; missed school
9/5 – Labor Day—slept 12 hrs; we woke him so he could be able to go to bed that night, but he would have easily slept another 2 hours.  Very sluggish, half asleep on brief errands, eyes half-lidded.  Could not go to grandparents’ for family birthday party/swimming.
9/6-leg pain at night, refusing shower because of pain and fatigue—took bath instead
9/7-extremely fatigued that morning, tried to get back into car 3x—his dad and assistant principal had to help him into school, get into locker
9/8-better with school, severe leg pain
9/9-crying before school, refused to get out of car—I had to talk him into going into school on phone;
Kept saying “I need energy”
9/10-ate out; quick trip to Petsmart and to get sandwich food from Target—begging to home while at Target even though it was a very fast trip
9/11, 9/12-severe shoulder pain, can’t practice on violin
9/12-psoriasis patch of several inches on inside of one elbow
9/14-leg pain, heating pad
9/15-leg pain, heating pad; protests shower because of leg pain
9/16-comes back home after 2nd period, says fatigue is like he’s wearing lead weights; missed school the rest of the day
Weekend of 9/16—could not get him to go anywhere with us on the weekend until we made him get out with us for an hour to Petco/Party City/bookstore—he complained of fatigue, begged to go home until we did
9/19 – 9/20—better with energy, mornings more smooth
9/20 evening-difficulty showering because of physical fatigue / difficulty sleeping despite Tylenol
9/21 – difficulty waking, has to miss school; heel pain
Psoriasis on inside of 2 elbows; pain in foot.  Having difficulty sitting on ground in health/PE class from pain—has to use a chair
9/24, 9/26 and 9/27-missed school from fatigue; had respiratory infection the last 2 days but extraordinary fatigue with it; asking for hot packs for legs this week
9/26-left wrist pain
10/1 Back pain, could not do violin. 
10/2—More back pain.  I asked him where it was—thoracic, right in middle of vertebrae, not to sides of it.  Crying about having to eat dinner at grandparents’ house because of fatigue
10/3-mild sore throat, fatigue
10/5-sore throat, fatigue. Felt like going to fair; within 30 minutes, he was wishing we brought the manual wheelchair for him.  Complaining of heel pain within 10 minutes, back pain soon after.  We could only go to shows/look in a very limited area because of his back pain and fatigue.  Evening—crying from having to shower

Behavioral results from sleep issues/illness:
9/12-asked pediatrician about Ritalin to at least help him with concentration; she wants an ADD eval first (more appointments we can’t afford, expensive), despite ADD eval from school.  Symptoms since 1st grade, PDD/autism, but now more difficult to manage.  Brain fog?? (notes below)
Problems answering questions; “I don’t know” to everyone (regression to earlier autism behaviors)
Gets distracted mid-sentence when we’re asking him something from fatigue or inattention in mornings or after school; I will have to repeat question many times—can’t focus on what we’re saying.  Much better on weekends.
Have to repeat requests of him many times to get him to do something (forgetfulness, not willfulness; honest problems with short term memory)
Gets distracted mid-long-division or writing assignment

An A student who did homework easily on his own last year; still making As but struggling because of fatigue

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