JC's Story: Birth to Diagnosis

This blog shares information specific to our experiences with JC.  At times I may provide research or technical information and I will try to reference those resources when possible.  Just as with anything, no two individuals with SPD are alike.  Some may share similar characteristics with JC while others with SPD may have other elements of the disorder.  This is the story of our journey to diagnosis. 

JC was born almost a month early, but all signs said that he was a healthy and happy baby boy.  I remember that he didn’t cry for several minutes after being born.  I thought, “Oh, what a good baby he is going to be – he isn’t even crying!”  But within a week, he was crying non-stop.  After months of agony, eliminating one food or another from my diet (I was breast-feeding exclusively), we finally saw a gastroenterologist.  Severe dairy and soy allergies were causing blood in his stools, but once I cut those items out of my diet, his fussiness continued.  By the time JC was 8 months old, I decided that we needed more information and help so I made an appointment with an allergist.  People (and by “people” I mean doctors) will say that a child who hasn’t eaten a particular food cannot be allergic to that food, and/or that most foods do not pass through the breast milk to the baby.  His allergy tests were positive for Eggs, Dairy, and Peanuts with sensitivities to soy and gluten.  By this point, he was refusing to nurse at times, had severe reflux, spit up almost everything he ate, had rashes and hives all over his body.  I didn’t know it at the time, but the process of food aversions had already begun.

Soon thereafter, I began having health problems and was diagnosed with ovarian cancer.  I weaned JC from nursing onto a special formula called Elecare (it has been a God-send!).  It is designed for children with feeding issues and severe food allergies.  He has been taking it ever since, and at times it is the only source of nutrients that he receives.  During my period of surgery and treatment I was fortunate to have my husband, parents, in-laws and aunt caring for me at various times.  They played the role of “mom” when I was too tired or sick to do so.  This was a blessing, but for a child who thrives on routine, this period of upheaval was rough for JC.  He was surrounded by love and everyone tried to understand his needs, but I will always wonder how my being sick impacted his development.  Throwing my sickness into the mix of his sensitivities certainly didn’t make matters better. 

As we learned more about JC’s allergies and what he could and could not eat, I started introducing new baby foods.  He would refuse to eat anything in the pureed form.  I was able to find baby food in a squeezeable container that he would eat and I now know it is because he didn’t have to see it or feel it in his mouth.  It required  a sucking motion (which he was used to), and it went straight into the back of his mouth and then was swallowed.  At this point I thought he was just a picky eater and would continue to try new foods.  I remember (and it makes me cringe now) that I would force the first bite into his mouth so that he would “taste” it and know that he liked it.  Within a few months he refused to eat at all.  He would go to the pantry or refridgerator and pull out some sort of food.  I would open it and try to feed it to him and he would turn his mouth away.  He was literally starving himself.  It broke my heart.  As a mother, feeding your baby is a primal instinct.  We nurse, then we take for granted that the rest comes naturally.  So when it didn’t, I began researching everything that I could.  I had noticed that everything that he would eat (the very few things) were crunchy.  That got me on the path of oral sensitivies, which led me to sensory processing disorder.  I scheduled an appointment with his pediatrician and fully expected her to say “No –he’s fine.  He is just a picky eater and he’ll grow out of it.”  I was primed for a fight because I knew that he was having problems with oral aversions and I also knew that the medical community didn’t yet “buy-in” to the SPD  diagnosis.  So imagine my surprise when she said “I think you are right!”  She referred me to a wonderful therapy center in a nearby town and we started therapy a few weeks later. 

The initial evaluation was so enlightening.  I completed a questionnaire that asked things like

• “Does your child like to swing?”  NO!  He hated it!  He hated any form of movement that turned him sideways or upside down. 
• “Does your child avoid certain textures of food?” – yes!  Everything but crunchy!
• “ Does your child explore his environment by mouthing objects?”  JC never “grew out of” the infant stage of putting things in his mouth (except for food that is).  He would (and still does) eat sand, mulch, dirt, rocks cat food – anything that was gritty or hard. 

There were several pages of these questions which brought things to my attention that I hadn’t even noticed before.  I never knew why he loved to be rocked, but hated a swing.  Or why he would put random things in his mouth, but not food. 

It was through learning more from his therapist (who JC and I adore!) that I began to understand all the underlying bits of SPD that were popping up.   It was enlightening, empowering and I finally began to understand HIS world and see things the way HE sees them instead of trying to make him see things my way.  He has made great strides and continues to improve every day. And just as importantly, my understanding of his needs improves every day.  This blog will chronicle his journey through SPD.  I would love to hear feedback and I would love to hear from other with children who have SPD.