Thursday, April 19, 2012

Hocus Pocus - Hurray! A Diagnosis!

"The greatest amount of wasted time is the time not getting started"
Dawson Trotman


And, boy have I spent a lot of time today staring at a blank screen.  I am a recovering perfectionist.  There is no cure for the malady that often plagues my being.  This blog is a therapeutic means for me to break the cycle of editing my life and share some of the enlightenment I have received from being blessed with raising a perfectly, quirky son and not-so-quirky daughter.   

When Noah was two and received a diagnosis of Pervasive Developmental Delay (PDD) I wasn't sad I was relieved.  Finally, I had an answer for why someone like me who had spent the better part of her teen years looking after babies and small children (and loving it!), who majored in Child Development  couldn't figure out why life with her son was extremely frustrating and tearfilled.  It wasn't like he couldn't talk.  He said plenty.  He could point and name animals and people and all sorts of objects...yet at 2 1/2 he had never said the word most parents dread from their toddlers, "NO!" A blessing most parents would say.  However, I had doubts that began when he was an infant, though I could never put my finger on it.  Doctors labeled my fussy baby as colicy and attributed his less than typical sleep patterns to acid reflux.  He was a persnickey little cuss.

He had his first seizure at 18 months.  As was his routine, Noah started his day at 4 a.m. However, when I picked him up something wasn't quite right and in a matter of minutes I knew something was really wrong.  His pallor was a sickly gray and then suddenly it seemed as if the life was being sucked out of him and replaced by a demon that violently protested his pint-sized living quarters.  While I set Noah on the floor my husband dropped to his knees and began praying...actually it was more like begging...begging God to spare our child. I numbly dialed 911 and within minutes we were on our way to the hospital.  Since Noah didn't have a fever, they couldn't label his seizure as febrile.  A febrile seizure is also known as a fever fit or convulsion brought on by a rise in temperature.  They are most common in children ages six months to six years. 

Thankfully, by the time we reached a doctor, Noah was coming around and seemed to be breathing normally and since I had had a few uncommon febrile seizures as a preschooler (99 temp would cause one), they believed I had passed this genetic quirk onto our son.  However, the next day he wasn't doing better and it seemed he had a virus or maybe an ear infection.  After spending an hour in the waiting room we were escorted to an exam room.  About 5 minutes after the nurse left, he began seizing again.  After a somewhat comedic performance in how the staff handled the situation (one nurse was crying while another tried unsuccessfully to get the oxygen tank working, as the doctor fumbled around -- later we learned none of them had ever witnessed a seizure....and they ain't pretty, but they were trained professionals!  Come on!  Act like one!) we found ourselves in another ER.  This time the neurologist on call recommended a 23 hour evaluation which gave us no answers just more questions. 

The last words the specialist said to me were, "I don't see autism." 

Outwardly, I thanked him and asked no further questions while inside my brain was screaming, "What the heck does THAT have to do with anything?"  It wasn't until later I would learn that up to 30% of kids with autism also have a seizure disorder.

We went on with our lives, but in the next couple of months I became increasingly worried about Noah's growing obsession of putting things in his mouth.  Now, I know babies learn about their world and explore by mouthing objects, but this was extreme.  We couldn't go to a park without hin trying to stuff fistfuls of mulch, dirt or gravel or whatever material available to him, into his mouth.  After it happened a few times I decided to have him tested for PICA.  I feared he had some sort of nutritional deficiency, however, the blood test came back normal. 

At his two year check-up, the doctor went through a developmental checklist and Noah was always within limits.  In fact, when he got to the question about the number of words he could say - Noah's 100+ vocabulary greatly surpassed the 20 word minimum.  However, the neurologist's utterance of the word autism continued to tangle my thoughts.  I sought the advice of my cousin who was knowledgeable on the topic as she worked as a teacher in an autism classroom.  After listening to my concerns and a replay of the exams, she said one thing that caused an "ah ha!" avalanche.  She asked me, "Ok, so he has 100+ words, but what kinds of words does he say?"  After listing 10 or so, I realized all of his words were labels.  He could say Mama, Daddy, dog, cat, ball, mailman, butterfly, but he didn't have one expressive word in his entire repertoire...like no, eat, drink, out, thirsty, hungry.  No wonder he was miserable.  He did not know how to express his wants, needs or feelings. 

The next day I put in a call to First Steps - an early intervention program in Missouri for children ages birth through three with developmental delays.  I requested an assessment.  Based on my concerns, they set me up with appointments to have an occupational therapist and speech therapist come out to the house on two separate occasions to evaluate my son. 

When the OT arrived, she immediately started asking me questions like, "Does he flap his arms?", "Does he stuff his mouth?"  "Does he bump into things?", "How much does he sleep at night?" "Does he walk on his toes?"

As she went through her checklist, I told her about my visit with the neurologist and she responded, "Really?...He really doesn't think it's autism?" 

Her comment left me a bit rattled, but I kept my cool. 

A day or so later, the speech therapist arrived.  She spent an hour playing and interacting with Noah.  As she finished and began packing up her things, she told me my son was just fine.  She further explained that all of his issues were behavioral and he was just controlling me.  Basically, she was telling me I needed to be more firm and consistent.  I thanked her, but was angered by her remarks. I wondered how all of this would play out with First Steps when there were two professionals with widely different opinions. 

As it turned out, the speech therapist's opinion trumped the OT's because in order to qualify he needed to have a 50% delay in two areas and since the speech therapist thought he had no delays - he was shut out.  I immediately put in a call to the neurologist and shared with him my concern for the kinds of words Noah possessed, as well as, the issues brought up by the OT.  He said at age two, Noah was so young.  He hated to give an diagnosis, but without one, we'd be gambling with losing valuable therapy time.  He didn't want to take the chance, so he diagnosed him with PDD, which I learned, trumps the words of the speech therapist. 

The next day it was actually a joy to ring up First Steps and say - "nah nah nah nah boo boo"...Ok, I didn't actually DO that, but I sure thought it!



1 comment:

  1. I'll bet you felt like calling them!! I can't stand it when professionals who see your kid once think they know 'em better than you!

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