Our granddaughter Pebbles has been difficult almost since birth.
She is a screamer.
Those four words so inadequately describe what we have gone through and still deal with, although (thankfully) to a much lesser extent now than when she was younger.
I know, I know. All babies scream. All children scream, occasionally. But Pebbles has never cried. She screams. And her brand of screaming has always been different.
So urgent. So angry. So glass-shattering, ear-splittingly loud that you can feel your eardrums violently vibrating in protest. Or in fear of actually splitting open.
And the So that sets her apart from most other babies and kids: So often.
I don’t think there was a single day in the first six years of Pebbles life that she didn’t scream, at least once but usually a lot more than once, about something.
The Rock and I have spent the past 8 years trying to figure out why Pebbles screams. And what we can do to help her. Many times we thought we’d found the answer.
But we’ve come to accept that there probably isn’t one simple solution, one magic bullet that will just fix things, like we so desperately wish we could.
Thanks to modern day pharmaceuticals (to which I owe my sanity) Pebbles doesn’t scream as often as she used to.
Pebbles also has never literally screamed all day long. Except during what we came to affectionately call Hell Week.
Which was every week she cut a tooth.
Twenty baby teeth. Twenty weeks of almost non-stop daily screaming.
Not crying. Screaming. Real, red-in-the-face, you’d-think-she-was-on-fire-if-you-didn’t-know-better screaming. Refusing to eat or to take a bottle. Refusing comfort, probably because she felt there was no comfort to be had.
And then a tiny new tooth would emerge and she was back to her normal screaming level, which was . . . well, very unpredictable, to be perfectly honest.
A Puzzle to be Solved
Unpredictable because, when she isn’t screaming, Pebbles has always also been the happiest baby and kid we’ve ever known.
She’s always been either super-duper-giddy happy, often with a good dose of hyper thrown in, or raging-against-life’s-injustices angry. Either using her whole body and soul to drink up life and enjoy it to the fullest or shrieking in indignant anger at . . . well, at whatever she was indignantly angry about at the moment.
Pebbles, a true paradox, our very own little modern day female Jekyll and Hyde.
Pebbles has always been, for us, a puzzle to be solved, swinging wildly back and forth between the opposite poles of her constantly changing emotions.
Part of the Puzzle . . .
. . . at least the reason-for-her-behavior part, can be easily explained by knowing her prenatal and neonatal history.
Pebbles’s mother, our daughter Sapphire, was a drug addict. We have no idea if Sapphire abused drugs during her pregnancy with Pebbles. But we do know that she was prescribed Lortabs – BY HER OBSTETRICIAN!! – while she was pregnant and have no doubt that she took them.
Thankfully, Pebbles was not born addicted.
While Pebbles’ little body and brain were developing inside of her, Sapphire inhaled massive amounts of second-hand, and likely first-hand, pot smoke.
After Pebbles made her entrance into the world Sapphire took LOTS of Lortabs and who-knows-what-else, while breastfeeding Pebbles.
She smoked pot with Pebbles in the room. A lot. We’re told that Sapphire thought it was funny to blow pot smoke and crack smoke in baby Pebbles’ face.
Spend a little time with your favorite search engine (the all-knowing Oracle Google being my choice) and you’ll understand the sort of long-term consequences any of this can have on a baby/toddler/child.
- Attention problems
- Negative and externalizing behaviors
- Attention deficit/hyperactivity disorder
- Oppositional defiant disorder
- Deficits in problem-solving skills
- Subtle deficits in learning and memory
Now isn’t that just a happy little package? But wait. There’s more.
Looking ahead to the teen years and beyond is truly frightening. Google tells us we can expect higher rates of delinquency, criminal behavior, and substance abuse.
Sapphire also dealt with a tremendous amount of stress throughout her whole pregnancy. Heck, throughout every single day of her adult life. And about that Google has the following cheery news:
“During gestation, the fetal brain develops dramatically . . . ”
Well, it’s pretty wordy so I’ll just summarize. What it basically says is if a pregnant woman is under a lot of stress it’s bad for her developing baby’s brain. Fortunately, an enriched environment and a secure parent-infant bond can reverse the negative effects.
Unfortunately, Pebbles didn’t spend the first 4 1/2 months of life in an enriched environment. Nor did she enjoy a secure parent-infant bond.
Then, to add insult to injury, the last month she lived with her mother Sapphire gave Pebbles Benadryl every four hours, around the clock. Except for the 4-6 hour-long stretches when Sapphire was passed out on drugs, leaving Pebbles to cry and scream unattended.
So we welcomed into our home a very beloved granddaughter, who was extremely wired and wound as tight as a banjo string. And we’ve been trying ever since to solve the puzzle of how to help her loosen up. While trying not to go out of our minds with all the screaming.
The Elusive Diagnosis
The other part of the puzzle, an actual diagnosis and treatment, has eluded us for years. Pebbles has been diagnosed, at different ages and by different professionals, with the following:
- Attention Deficit Hyperactivity Disorder
- Disruptive Behavior Disorder
- Anxiety Disorder
- Disruptive Mood Dysregulation Disorder
- Sensory Processing Disorder
- Pediatric Bipolar Disorder (PBD)
- Reading and writing disabilities
- Asperger’s Syndrome
It feels like we’ve been swept up and tossed around inside a diagnosis whirlwind.
Word cloud created at Wordle.net
Each of these diagnoses have their own difficulties and issues to be dealt with. But the one that worries us the most is Pediatric Bipolar.
Welcome to Bipolarville
What does Pediatric Bipolar Disorder look like? For Pebbles it’s been all of the following:
- Rapidly shifting moods, from extreme happiness or silliness to tearfulness for no apparent reason.
- Need to talk non-stop. (I mean literally NON.STOP.)
- Depressed or downcast mood, or showing little expression.
- Manic, overexcited or giddy mood.
- Feelings of superiority (i.e. she knows more than EVERYBODY. This one really endeared her to teachers when she was in school).
- Heightened sensitivity to perceived criticism. (Which can trigger a MASSIVE meltdown if the adult doesn’t recognize the signs, which her teachers NEVER did, even though they assured us they knew “exactly how to handle it.”)
- Far more easily frustrated than a typical child. (If she can’t find her blanket, or the TV remote, or anything-she’s-looking-for-at-the-moment it can turn into MAJOR. MELTDOWN. TIME.)
- Impaired ability to plan, organize, concentrate, and use abstract reasoning. (Pebbles is the messiest, most disorganized, out-of-kilter kid I’ve ever known.)
- Intense irritability.
- Rages, tantrums, crying spells, or explosive outbursts that can occur with small provocations (such as being told “no,” or being corrected by someone she perceives is angry with her, or if Minecraft crashes, or if she can’t find her blanket, or if….if….if…..).
- Restlessness or excessive physical activity, which is often chaotic. (Seriously. When she’s in a manic state Pebbles paces, paces, paces, stands on her head, chews her clothes, walks on windowsills, the back of the couch, the coffee table, all while talking, talking, talking non-stop, and knocking stuff off of every horizontal surface she comes into contact with.)
- Difficulty falling asleep. (Fortunately clonidine has solved this problem. However, before clonidine Pebbles literally wouldn’t fall asleep until 1 or 2 AM. EVERY. SINGLE. NIGHT. Recently we ran out of clonidine. She was awake for 30 long hours. 30 hours. Really. T.H.I.R.T.Y H.O.U.R.S. And never slowed down or got tired. She just got more and more hyper and manic. IT. WAS. A. NIGHTMARE.)
You can read about that nightmare here.
Life on the Bipolar Roller Coaster! Wheee! What a ride!
Image: Nick Galifianakis
More Puzzling Puzzles to Puzzle Over
Pebbles doesn’t always do the things I’ve just described. Since she’s been on meds to treat her bipolar she has days, and sometimes lots of consecutive days, when she behaves like a neurotypical kid.
All this time, while we’ve been trying to find out why Pebbles does the things she does, we’ve puzzled over this. Why does she function so normally some times and other times she seems so…well…so broken?
Bipolar disorder is episodic, which means the symptoms don’t always appear and may come and go at random times. So there’s the answer to that.
Who Can We Blame?
So why does Pebbles have PBD? Did Sapphire do something to cause it? Did we? Is it just the luck-of-the-draw?
Genetic studies have shown the risk of having bipolar disorder increases if there is:
- a family history of bipolar disorder (Sapphire – check)
- depression (check)
- substance abuse (and check)
So Pebbles’s chances of having bipolar were incredibly high. So high, in fact, that if bipolar were a lottery, she’d hold a winning ticket. Woo Hoo!!
Some cheery news from these genetic studies is that, since early-onset BP appears to have biological origins, it’s considered a no-fault brain disorder.
YAY!! It’s no one’s fault. So we don’t have to feel guilty.
A Glimpse into the Future
So, what does Pebbles’ future look like?
The younger the symptoms start the worse the future outcome. Another risk factor for a worse outcome is the existence of additional (co-morbid) pathologies, i.e. ADHD, which Pebbles also has.
So we may be looking at a future in which Pebbles won’t be able to ever function without meds, therapy and lots of supportive adults in her life who know her well and love her immensely.
And that’s what worries us the most.
The Rock and I are now in our 60s. Pebbles is only 8 years old.
Who will be there to help her when we’re gone, to make sure she stays on her meds, to ensure she continues receiving therapy, to recognize when she’s becoming unstable, to know if she’s gotten out of control to the point that she made need hospitalization to get stabilized?
Bipolar disorder is a lifelong illness that will have to be monitored and treated for the remainder of her life. The suicide rate is extremely high for people with bipolar.
We worry a lot about our puzzling little paradox and her future.
Image created with The Gimp
Wondering who The Rock and Pebbles are? Want to know
why we’re raising Pebbles? And who the heck is OCD Louie?
Find the answers and more on my About My Blog page.
You might also like Eleven Random Facts About Me and
My Answers to Sophie’s Questions on my Liebster page.