Little Canaries

It wasn't the world's most uneventful pregnancy, that's for sure.  When I was carrying John, I was in the process of moving, switching jobs, taking care of a sick dog, and completing a fellowship on the East Coast while my husband completed his fellowship on the West Coast.  But the pregnancy was going well, in spite of the turmoil that was going on all around me.  John's ultrasounds consistently looked great and he was growing like a little bean sprout.

I received the first RhoGam shot at 28 weeks gestation, right on schedule.  I have Rh-negative blood, and Dan has Rh-positive blood, so I needed to be immunized to prevent my body from rejecting subsequent pregnancies.  I started really feeling crummy about halfway through the pregnancy, and it all went downhill from there.  My bloodwork was starting to come back with the highest concentrations of antinuclear antibodies (ANA) I have ever seen.    I had to go to physical therapy because my joints were in such bad shape I couldn't walk, and the disks in my back were starting to bulge from the strain on the connective tissues around my spine.  My obstetrician started doing nonstress tests every few days or so to monitor John and make sure he was still thriving.  At 35 weeks, I was really feeling awful and I went in for a nonstress test as usual.  I sat down, did my job pressing the little button, and the nurse came in about 20 minutes later.  She looked at the chart, frowned, and pulled out a can of orange juice.  After three cans of juice, I was quite awake but John was nonreactive.  The nurse called in my doctor and she immediately took me into the next room for an ultrasound.  She spent at least 20 minutes looking for any signs of activity, but saw no movement at all, not even breathing motions, kicking or even a twitch.  If his little heart wasn't beating on the screen I would have thought the worst.

She admitted me to the hospital.  I was monitored around the clock until they could get the two of us stabilized.  My kidneys were starting to shut down; I was hypoglycemic, feverish, and retaining a tremendous amount of fluid.  After a couple days of intense watching and waiting, they were satisfied that John and I were on the right track and we were sent home.  I went into labor two days later, and weighed 10 pounds more than the day before -- all fluid.  After 43 hours of labor, John was born with great Apgar scores (9 & 9) and a very robust cry.  In fact, he cried, and cried, and cried some more.  He didn't want to nurse -- he wanted to cry.  That evening, the nurse came into my room, gave me another shot of RhoGam, and gently informed me that she was taking John out of my room and into the nursery because he was going to keep me awake (translation: he was keeping everyone on the entire floor awake).  He had to be kept under the warmer for two days because he couldn't regulate his body temperature, and he was jaundiced, although apparently not badly enough to warrant attention... 

John's early development of language and motor skills was nothing less than astounding.  He was rolling over from stomach to back at 21 days of age, spoke his first word ("hello") perfectly at 11 weeks, stood alone holding to furniture at 15 weeks, sat unassisted at 20 weeks, and started walking the day after his 9-month birthday.  John cooed, smiled interactively, babbled and made raspberries, and at his 9-month check-up, he was able to articulate three words clearly in appropriate social context ("Mama," "dog" and "hello").  He subsequently learned to say "bye-bye," "baby," and "ball," although he was not able to replicate them for more than a few days.

 Around the time John started walking, he had the first of six successive bouts of asthma, respiratory infections and otitis media during the spring and summer of 2003.  He was treated with antibiotics for each of these illnesses, and after the sixth ear infection, John's otolaryngologist performed a myringotomy and placed bilateral pressure equalization tubes in his ears.  For a while, we believed that his language acquisition abilities were adversely affected by his hearing deficit from the otitis, and we were encouraged when he started speaking again soon after the placement of the ear tubes.  He learned to say words that approximated "fish" and "diaper," although none were as clearly enunciated or articulated as his first words.  

In the meantime, John's motor skills continued to progress.  At 10 months, he was able to go up and down stairs, run, kick a ball, and walk forwards, backwards and sideways.  His balance, hand-eye coordination and concentration were quite impressive; he could ride his scooter and tricycle with ease, jump, walk (not crawl) up and down stairs unassisted, run through shopping malls, get in and out of laundry baskets, boxes and beds, build elaborate towers with his blocks, swing on his "big boy" swing and go up and down a slide, and play fetch with our dog.  He could play various rhythms on his toy drum and hum familiar tunes like "Old McDonald Had a Farm" with us.  On one occasion, John drew two pictures of an airplane on his Magnadoodle while watching "Jay Jay the Jet Plane" on television.  He mastered every puzzle and shape sorter we have given to him, some within a matter of minutes.  He also knew how to turn on (and turn off) and operate all of his electronic toys and our electronic equipment including the VCR, television and radio.  One of his speech therapists reported that in over twenty years of working with children, she had never seen a child as young as John master puzzles and spatial games as quickly and precisely as he did.

When John was younger, some friends and family members remarked that his behaviors were strange or unusual for a child his age.  While we were initially not concerned about what we perceived to be John's lovable idiosyncrasies, the persistence of these behaviors eventually led to some concern.  John was always interested in the tactile, concrete world.  When we would hand John a new toy, he would initially approach the item like a little scientist or engineer given a specimen to study, rather than a child playing with a toy.  Later, however, he would enjoy playing with his toys in an appropriate manner (i.e. pressing buttons to make animals pop up, turning the handle to open the cash register drawer, pushing cars and making car noises, etc.)  He rarely throws or breaks his toys or rips pages in his books; he is gentle and contemplative when at play, but is always keenly aware of everything that is going on around him.  If permitted, John was intrigued by taking things apart to see how they work; his favorite toy as a very young infant was an old dissembled remote control. 

Since he was an infant, John enjoyed constant intellectual stimulation and still becomes bored with routine – each new experience or activity we introduce is met with excitement, and his curiosity for the world around him is insatiable.  During his infancy, he tended to move from toy to toy during the course of the day, attempting to experience everything around him. His ability to recall specific places, pictures, and songs appears to be exceptional.  It has sometimes been difficult as parents for us to keep up with John's insatiable curiosity.  Many who know John characterize him as spirited, adventurous and independent, always going after what he wants rather than waiting for an adult to get it for him.  Early on when John was hungry or thirsty, he would simply whine and cry until we figured out what he wanted, which initially took quite a long time.  While other children might ask for or make the sign for a sippy cup, John walks into the kitchen and looks back and forth between me, the sippy cups and the microwave to indicate that he wants me to make him some warm milk.   

John had a tendency to be stubborn when it came to objects or activities that interest him.  For example, at 18 months his favorite activity was throwing his toys into places from which they could not be retrieved.  When this subsided, he found a new interest in climbing to the highest vantage points possible in the house (moving chairs to climb up and sit on the kitchen table to read the latest copy of National Geographic, climbing onto the top cushions of the couch to gain a different perspective, etc.)  We were always relieved when these behaviors subsided.  When he was young, John had a passion for closing and opening doors, cabinets, and drawers.  He also insisted upon gently touching hair on both people and dogs; he relentlessly chased our dog around the house until we had her hair completely shaved.  She is no longer the object of his obsession, much to her relief.   Other dogs and people with hair, however, tended to be the target of his very tender and contemplative attention.  He still has an insatiable compulsion to put his hands in water whenever it is available (glasses of ice water in restaurants, dog dish, ocean, bathtub, etc.).  The happiest days of his early life were when I took him for swimming lessons at the local pool – he was truly in his element.

Some of the attributes other adults have assigned to John include "precocious," "sensitive," "content," "happy," "genius," "easygoing," "lovable"...

John started direct speech language therapy two times per week with a focus on speech and language and use of signs, symbols and voice output to help increase his language and functional communication skills.  He also started working with an occupational therapist to address his oral aversion and feeding issues, including brushing his teeth, feeding himself with a spoon, and chewing of solid food. 

John experienced feeding problems with oral aversion from a young age, and refused to put anything in his mouth (unless we were feeding him) until very recently.  He seems to be afraid of anything that might potentially choke, gag or hurt him if ingested, and he had great difficulty learning to eat lumpy food.  Even now, he has problems with eating and drinking, and only recently started to spoon-feed with assistance.  Since he was 12 months old, however, John has enjoyed feeding us crackers, cookies, and other items that he has refused to eat; thus, he understands that he is supposed to put those things in his mouth, but simply will not do so.  When presented with a straw from which to drink, if he even puts it in his mouth, John has a tendency to bite the straw instead of suck fluid into it.  John has no problem drinking from a regular cup, but he will only drink from sippy cups that do not have spill-proof valves.  His diet is limited to soft, mashed and pureed foods since he swallows his food without chewing.  I had difficulty nursing John when he was young, and he would not take a pacifier.  He has never been able to blow out a candle or blow bubbles.  He occasionally grinds his teeth while playing.  His occupational therapist started by using the Wilbarger Protocol (deep pressure and proprioceptive techniques with oral tactile stimulation) to help decrease John's sensory defensiveness regarding his mouth, including his pattern of food avoidance, fear, and anxiety about eating.  This technique made visible improvements in John's overall anxiety level; he demonstrated greater use of eye contact and increased his attention span. 

John had gastrointestinal problems from birth.  Even when he was an infant, he would be irritable after every meal of breastmilk; he weaned himself and formula replaced the breastmilk, but not the irritability.  He would cry excessively and arch his back in pain; he was started on Zantac at four months for acid reflux.  He was later switched to Prevacid, which only exacerbated his symptoms.  His routine hemoglobin test at his 12-month check- up indicated mild anemia, so he began taking Poly Vi-Sol and ferrous sulfate iron supplements.  When his hemoglobin level was down to 9.4 g/dL after several months of iron, we conducted guaiac smear tests, which were positive for occult blood, meaning that he was bleeding internally and we didn't know where or why.

He went in for an endoscopy and colonoscopy when he was 18 months old.  The endoscopy/colonoscopy was unremarkable, but biopsies revealed chronic gastritis and prominent lymphoid aggregates.  Bloodwork conducted in tandem with the colonoscopy indicated decreased levels of neutrophils, elevated counts of lymphocytes and eosinophils, and a slightly elevated level of carbon dioxide.  We retested the stool several months later, and the smear tests were again positive.  In May 2004, John had an upper GI series and small bowel follow through with barium contrast, which was normal.  At this point, his gastroenterologist offered a diagnosis of lymphonodular hyperplasia, although no course of treatment was suggested.  John was getting sicker by the day, and his subsequent blood reports were showing decreased levels of neutrophils, very low glucose (57 mg/dl), and elevated levels of lymphocytes, eosinophils, platelets, and thyroglobulin.  His sedimentation rate was also elevated (15 mm/hr), indicating inflammation somewhere in his body. 

At the same time that all of this mess was going on with his gut, John was referred by his pediatrician for a developmental evaluation when his language development failed to keep pace with the development of his gross and fine motor skills.  He was evaluated at 21 months by a developmental pediatrician and at 22 months by the Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH) Center at the University of North Carolina at Chapel Hill.  He was not given a formal diagnosis by the developmental pediatrician, although her evaluation notes indicate that John had some features of autism including social aloofness and poor language development, but he did not demonstrate a full range of autistic-like behaviors during the evaluation.  The TEACCH evaluation concluded that John meets some of the diagnostic criteria for autism. 

He was later evaluated by a speech language pathologist to establish recommendations for speech and augmentative communication therapies, and she noted that he understands language better than his speech and language difficulties allow him to express, and that he needs structured practice and expectations to use speech, signs and symbols to communicate in his daily routines.  Ultimately, her diagnosis was a speech and language disorder with some atypical language and social behaviors.  His occupational therapist believed John has significant issues with praxis and motor planning.  His speech therapists stated unequivocally that John struggles with oral/verbal dyspraxia.

John started attending a wonderful structured playgroup at TEACCH at 26 months.  In the beginning, he could only say a handful of words, none perfectly.  He could make a sound like a cow, sheep and horse, and could point to the animals to identify them.  He didn't know how to share, made little eye contact, and could not sit for any length of time to perform a simple task.  Everything was on his terms, and he was not interested in interacting with any other people other than Mommy and Daddy.  But by the time the first semester ended, he knew all of his letters (upper case and lower case), colors, shapes, and numbers up to 10.  He doubled his vocabulary and mastered many tasks that required complex fine motor and planning skills.  He became interested in animals, pretend play, and singing with the group.

At 28 months, I hired a wonderful young woman to come to the house for 10 hours per week to work with John intensively, one-on-one, on social skills and communication.  Within a month he was sharing his toys, drawing pictures with his magnadoodle, and became more vocal.  She made a point to integrate the activities at TEACCH with his tasks at home so that he would have consistency across the day.  She worked on two-word combinations, and by Christmas he could say "thank you," "big truck" and "push please."  They played games together, took turns, made choices, and sounded out words together.  She also designed a series of games tailored for John's interests and worked on creative projects, including painting, drawing and coloring. 

Nobody around here knew how to fix John's tummy, so I started searching all over the world to find an expert in lymphonodular hyperplasia.  I found Dr. Andrew Wakefield and Dr. Arthur Krigsman.  Dr. Krigsman was within a day's drive in New York, so I opted to try to get John into his clinic.  I approached the application forms like I would a professional application; I let him have it with both barrels.  I submitted pictures of John's diapers, his bulging tummy, his posturing, and a loooong narrative about how we got from point A to point B, including all of his medical history and a developmental profile.  I would have called my senator and had him write a letter if I thought it would make a difference.  In my entire life, I've never wanted anything more than to get John in to see this doctor.  The good news came a couple months later, after all the tests and bloodwork were completed.  Dr. Krigsman agreed to take John's case.  At the beginning of December 2004, he put John on anti-inflammatory medications to get the colitis to calm down and start healing.  He also put John on the gluten-free casein-free diet (GFCF) and we started supplementing with probiotics, DMG and essential fatty acids. 

And then the most wonderful, beautiful, fantastic thing in the world happened...John started to get better.

When we got the next round of bloodwork back in January, we thought they had mixed up his file with someone else's.  It was like looking at a completely different kid -- not one of his numbers was off, not even the blood sugar.  We had recently remarked that it was strange that he had not had an asthma attack or ear infection since October; as of today, we're still waiting...

In January, John continued to do speech therapy, occupational therapy, the social therapy at home, and the TEACCH playgroup, and we started him on hippotherapy one day a week.  Everyone was starting to comment about his progress.  He was starting to count to twenty, and we could understand what he was saying.  Up to ten, he was counting with one-to-one correspondence.  He was adding more shapes and colors to his repertoire, and attempting to say every word he heard.  He wasn't just making his toy animals walk around -- now, they were eating snacks, taking baths, and chasing each other.  He was performing song games perfectly, like "itsy-bitsy spider" and "head, shoulders, knees and toes."  He was absorbing information faster than we could feed it to him.  About a month ago, we discovered quite haphazardly at the TEACCH playgroup that John is, in fact, able to read (remember, he's not three yet).  He matched pictures of animals perfectly with the corresponding words, and was able to repeat it consistently, much to the amazement of everyone in the room.  When we got home that day, I started testing to see how much he could actually read.  It was amazing.  I went right up to the computer and made a spelling activity for him, and he could also spell most preschool three- and four-letter words with ease.  The great thing about this is that it's not hyperlexia or sightreading; he seems to really understand what he's reading.  His teachers at the TEACCH program built on this skill and his therapist at home continued to integrate that interest into his social play and communication.  He now reads Go Dog Go and Where the Wild Things Are, and when he doesn't know a word, he tries to sound it out. This week, his occupational therapist discharged him and presented him with a certificate of achievement. 

As I'm writing this, it has been four months on the diet, anti-inflammatory meds and supplements, and we're almost finished with the second semester of TEACCH and home therapy, and we're still doing the hippotherapy.  John is a different child than the sick little boy we took for evaluations a year ago.  Today, he is keenly aware of everything around him, and the social distance and aloofness has been replaced with hugs and enthusiasm.  He is affectionate, gentle, and caring.  His memory and attention span, although always great, are now amazing.  He is still not a good eater, but it takes a long time to overcome such a trauma to the system, and the residual psychological effects might last much longer than we know. 

When I got back from the Boston DAN! conference last week, I started John on a new vitamin supplement that includes TMG and big doses of B6 and B12 (folinic acid).  Today in the grocery store, John wanted to push the cart, and I said that I would push the cart.  He looked right at me and said "I do it." 

I think today was just about the best day I've ever had in my entire life.

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Last modified: 04/24/05