When Carter was brand new and cried all day and night, we thought at first that he had unusually severe colic. We’d been blessed first with three easy babies; the bill had finally come due.
But he was not a regular baby who cried a lot. He also hardly slept; he didn’t interact with us much at all. He wanted me and only me, all the time, day and night. He was limp and floppy, mushy as jell-o in a plastic bag. As the crying went on (and on, and on), and was so frantic and shrill, we got scared that he was in pain. It seemed like the only possible explanation, and we were horrified that our poor baby was in some kind of agony. So, although he had no symptoms, we tried several medicines for reflux. No change. What else could we do? At that time, nothing. This was the period during which no one would listen to me; no matter how hard I tried to make it clear that a) I knew what I was talking about and b) that something was not right, I got no help.
So we hobbled along, and when Carter was about 6 months old and his doctor declared him hypotonic (low muscle tone, the cause of his floppiness) and sent us off to see a neurologist, I was happy. Terrible, right? But this was a pattern that repeated itself a dozen or more times. It wasn’t that I wanted something to be wrong with Carter; it was that I knew that something was wrong and wanted someone to identify it for us.
What followed, with the neurologist and the many specialists that we’ve seen since, is a process whereby we’ve identified issues without finding an underlying cause.
It started like this:*
Test, Procedure, or Evaluation
|Blood tests – lots and lots of blood tests||6 months||God only knows||Negative|
|Neurological evaluation||6 months||Determine the cause of Carter’s hypotonia||Confirmed presence of moderate central (meaning more in his trunk than in his limbs) hypotonia|
|EEG||10 months||Rule out seizures as the cause of Carter’s chaotic sleep patterns||Negative|
|MRI||11 months||Determine the cause of Carter’s hypotonia||Negative|
|Full developmental evaluation||11 months||Determine Carter’s level of functioning and qualify him for services||The team diagnosed the following: fine motor delay (mild), gross motor delay (moderate), sensory processing disorder, separation anxiety disorder, expressive language delay|
|Barium swallow study||14 months||Determine the cause of Carter’s frequent gagging & choking; look for reflux||Negative|
|Barium enema||14 months||Rule out structural abnormalities as the cause of Carter’s severe, frequent constipation||Negative|
|Weight check at the pediatrician’s office||16 months||I was concerned about Carter’s slow weight gain||Carter was diagnosed with FTT (failure to thrive) for the first time|
By that time, we were tired. Weary. And really really tired of people not listening to our real concerns. The hypotonia and motor delays concerned us, of course, and Carter’s constipation was epic. (Seriously; 10-15 days with no poop at all, followed by 2 full days during which he struggled and grunted and strained to move all of that out of his body and into his diaper. The screaming? Never mind. I don’t want to talk about it.)
As much as we were concerned about those things, we were far more worried about his emotional development. There was the crying, of course. The all day, half-the-night scream-fest that our lives became three days after Carter was born. There was the not-sleeping, the mountainous wakefulness of him, his inability to fall asleep without my total participation.
Most of all, there was the unhappiness. Carter smiled for the first time at about 3 1/2 months old (Most babies smile their first real social smiles around 6-8 weeks.) and I was so relieved to see it, I bawled. Even once he had the skill, though, he rarely used it. He was just…unhappy.
He didn’t know how to laugh, either. Even if we tickled him, he did this weird uff uff uff thing that didn’t sound like laughter so much as a person who is trying to drag a heavy box across a room. I would take Carter to playgroup or LLL meetings and cry when I heard other baby’s spontaneous laughter. He finally laughed not long after his second birthday, but just like his smile, he didn’t want to wear his laugher out and used it rarely. To this day, the sound of Carter’s laughter startles me.
In place of the therapists we needed, the agency sent us a person whose job title was “Child Development Specialist.” She taught me how to sing Eensy Weensy Spider with Carter. Told me (with a straight face, sitting in my book-lined living room, having moved aside a large stack of books to make room for her purse) that reading to Carter and letting him see us reading was essential to his development.
Apparently, our child had all of his problems because we were too stupid to know these things. Although I seriously considered it, I never gouged out the eyes of the visiting “specialist.” (Though specialist of what, exactly? You don’t need much formal education to teach people to do things they already know how to do.) Several people said to me, “You know how things are in New Mexico; there are so many people who need to be told things like that!” Fair enough, but seriously, the book-lined walls weren’t enough of a clue for her?
Weary and frustrated, we gave up.
I was ashamed of that decision, but the search for a diagnosis had worn us down. I needed time to regroup. We didn’t resume our search until Carter was almost three years old.
One struggle I had was finding providers who would listen to our whole story. I didn’t believe then (and don’t now) that Carter’s many issues were unlucky coincidences. Except for his allergies and asthma (which he inherited from his dad), I’m convinced that there is a common cause. We were hunting for the bottom-line diagnosis that would explain everything.
We returned to our search for that diagnosis when Carter began to have symptoms of CVS, though we didn’t have that diagnosis yet.
|Test, Procedure, or Evaluation||Age||Purpose||Result|
|Full developmental evaluation||2 years 11 months||Determine Carter’s level of functioning and qualify him for services (again)||The team diagnosed the following: fine motor delay (moderate), gross motor delay (mild), sensory processing disorder, separation anxiety disorder, right-sided weakness|
|Well-child check||3 years||Annual check-up||Carter was diagnosed with FTT for the second time (he hovered at a very low weight for a long time)|
|More blood tests||3 years||We were trying to rule out pretty much everything||And we did – all negative|
|Child Find evaluation||4 years 5 months||Determine Carter’s level of functioning and qualify him for services (again, but this time services would come through the public school system)||The team confirmed all of the findings of the last two teams at 0-3 and added visual processing difficulties, slow processing speed, and some kind of memory issue that they couldn’t name|
|Evaluation and treatment by a developmental pediatrician||4 years 10 months||Rule out autism and try to diagnose (and therefore choose appropriate therapies for) Carter’s increasingly troubled behavior||ADHD, severe generalized anxiety disorder; Carter got his first prescriptions for psychotropic drugs and (life-changer, this one) meds for sleep!|
|Evaluation by a gastroenterologist||5 years||Diagnose the cause of Carter’s episodic vomiting||Cyclical Vomiting Syndrome diagnosed|
|Well-child check||6 years||Annual check-up||Carter was diagnosed with FTT for the third time|
|IEP evaluation||6 years||Determine Carter’s eligibility for special education||Confirmed presence of memory issues and slow processing speed and other learning disabilities; IQ test put Carter in the borderline range|
|Evaluation and treatment by a pediatric psychiatrist||6 years||Arrest Carter’s spiraling instability, violence, and self-injurious behavior||Confirmed ADHD and severe generalized anxiety disorder diagnoses; diagnosed bipolar – changed one year later to bipolar with psychotic features|
|Genetics evaluation and metabolic and genetic blood tests||7 years||Rule out metabolic and genetic disorders as the cause of Carter’s issues; we were especially suspicious of Fragile X||Negative|
|Neurological evaluation||7 years||Find out if, with all the new information we’d gathered since Carter’s first neuro evaluation at 6 months, we could make a diagnosis||No definitive diagnosis, though the neurologist does believe that Carter’s issues have a single neurological cause, possibly due to a stroke or hypoxic brain injury in the weeks or months before his birth|
And that’s where we are today, with our not-quite-a-diagnosis. I have a hard time describing how I felt when the genetics tests and the second neurological evaluation came up (mostly) negative. I can’t describe it because I don’t exactly understand why I needed (need) it so much. Carter would require the same therapies; he would take the same medicines. We would face the same struggles and live the same joys.
I was surprised, after we decided that the time had come to stop searching for a diagnosis, to find that I was grieving. Somehow, I had become attached to the idea of finding out why. I’m no different than any other woman who has given birth to a child with problems; I’ve searched my memory over and over for the things I must have done wrong.
So I grieved, and although it makes me sad (and might always), I’m learning to live with the not-knowing.
*I didn’t include any of the diagnoses that Carter was given (or that we considered) but were ultimately rejected. Those short-term and provisional diagnoses would more than double the size of these already unwieldy tables.