I've been trying to write for several months about Claire's progress with sleep, speech therapy, and sensory issues. It's difficult for me to blog about things that aren't going well, and are ever-changing. Perhaps I should have broken this post into several smaller ones, but all of the pieces are interrelated. Plus, there's now a two-year-old in the house, so I don't get much time at the computer these days! This post has been written in bits and pieces over several months, and I'm finishing up now that Claire's sedated and asleep, and I'm having insomnia.
I've always known that Claire's prematurity would put her at risk for sensory issues. Some preemies her gestational age get away with nothing more than a preference for wearing earplugs at loud places/events. Others have full-blown Sensory Processing Disorder (the condition formerly known as Sensory Integration Disorder). Also, preemies who had more difficult NICU courses than Claire often have odd pain responses. Some overreact to pain, others under-react. There's a large range of outcomes, and statistics aren't a crystal ball for any individual child. It's been a tightrope walk for me, these past two years, trying not to read too much into Claire's behavior and see things that aren't there, but also being informed and catching real problems early so we can start appropriate therapy.
I've observed from early on with Claire that she seemed to experience the world a little differently than her full-term peers, but it's taken a long time to sort out what was a sensitive nature, what was colic, what was sensitivity to her environment that she would grow out of, and what was indicating a more permanent problem. Still, I've told Claire's pediatrician at EVERY appointment she's ever had that I suspect some degree of sensory trouble. At an appointment this past November, as I was talking to the pediatrician, she was watching Claire eat a banana. Suddenly she said, "Oh my! She DOES have sensory issues!" I managed to refrain from saying, "Told you so!"
We are on a one-year waiting list to see a pediatric neurologist, the local expert on non-neurotypical children. We won't have a diagnosis until then, and even at age three, it would be difficult to put an accurate label on whatever's wrong with Claire. This isn't really a problem, though, because there's nothing that can be done other than the occupational therapy we've already got Claire in. It would be nice to understand her better, and someday it might be useful to have a label to get services from the school system, etc. But, for now, we're doing everything we can, and I'm gaining a lot of insight reading The Out-of-Sync Child.
Meanwhile, we've been pursuing Claire's speech therapy and occupational therapy for eating problems. Some of the things that I attributed to sensory problems turned out to be reflux symptoms, and some of the things that I attributed to reflux turned out to be sensory-related.
We've been working very hard with Claire on learning to use her teeth to chew, rather than just mushing the food with her tongue. (Claire's got the life. What other two-year-old has a mom who says every day, "Time for your Twizzlers!") We're making very slow progress, but Claire has started to get comfortable with manipulating food in her mouth. It took me about nine months to convince our pediatrician and myself that Claire needed feeding therapy, and then another several months of waiting on the waiting list. When Claire finally had her feeding evaluation, the occupational therapist gave me a little rebuke, saying that she wish she'd seen Claire a year sooner, when she could do more to help!
Her therapists aren't sure if she has a motor problem in her mouth and throat, which would explain everything from why she couldn't breastfeed to why she doesn't move her mouth when she talks. Another possibility is that her mouth is very sensitive. She got diagnosed as "orally defensive" early on, and it's possible that food in her mouth feels uncomfortable, hence the reluctance to eat, the pickiness, and the dramatic meltdown every time we have to wipe her face. Yet another possibility is that she has low muscle tone in her throat, making swallowing difficult, and contributing to snoring and sleep apnea.
I don't recall if I posted the results of Claire's last speech evaluation, but she had been falling farther and farther behind, not qualifying for state-subsidized speech therapy, until finally she became a year behind schedule. Sign language has been an indescribable blessing for us, allowing Claire to communicate, and allowing us to help her by understanding what she's attempting to say, so we can say the words correctly while encouraging her, rather than correcting her. Around age 18 months, most children have a language explosion. Most of Claire's peers went from 15-20 words to 30-50. Claire's language also tripled, from one word to three. My understanding is that at age two, children are supposed to have about a 50-word vocabulary, and should be starting to put two words together. Claire's vocabulary recently expanded significantly, but she's not even close to that level. However, she does use about 50 signs.
Speech therapy has been helping Claire, but an even bigger boost to her learning has been getting better sleep. In November, Claire's lifelong sleep problems finally brought James and me to the very ends of our ropes. All three of us were always exhausted, and Claire's temper tantrums became intolerable. She's always fought sleep as though it would kill her, and once she grew too big to strap down in her infant car seat and rock, we had no reliable way of getting her to fall asleep. One night, when I was out driving for the third time in one night, trying to get Claire back to sleep in the wee hours, I drifted off of the road. (Fortunately, I didn't hit anything, but that was quite the wake-up call, so to speak!) Everyone was losing their tempers, I wasn't safe behind the wheel, and we needed help, desperately.
Following the advice of the many preemie parents I've found online, we started giving Claire melatonin supplements at bedtime. It's been an unbelievable transformation. Once we were able to establish a regular bedtime, and get her to fall asleep usually within half an hour as opposed to the one to five hours it used to take, everything changed. Claire socializes more, enjoys everything more, is less bothered by stimuli, and even eats better. She grew and inch and gained two pounds! Every possible aspect of her life has improved since starting the melatonin. When I asked our pediatrician about it, she said that she's never had a patient younger than three on it, but that all of her kids on the autistic spectrum are on melatonin. (Some people consider Sensory Processing Disorder a part of the autistic spectrum, others do not. Let's just call it the ultraviolet of the spectrum.) I have wondered if, had I not discovered melatonin on the internet, if our pediatrician ever would have told us about it!
(DISCLAIMER: Do not try this at home! Melatonin is a hormone, and has never been studied in non-blind, neurotypical children. Please, people on the internet who have stumbled here, do not give a healthy, normal child melatonin for run-of-the-mill sleep troubles, as nightmarish as they can be. Talk to your pediatrician. Please.)
Every aspect of Claire's life has been impacted by her poor sleep, and although the melatonin has made a sea change in our lives, Claire still sleeps poorly and wakes frequently. Sleep is so entwined in all of Claire's problems, it's impossible to write about sensory issues or speech therapy without addressing the big ole elephant in the nursery.
When Claire was about six months old, I started asking our pediatrician for a referral for a sleep study. Claire's difficulty staying asleep, snoring, sweating, and irregular breathing had me concerned. By the time Claire was one,
our pediatrician sent us to an Ear, Nose, and Throat doctor at Children's Hospital. The ENT did a cursory exam and sent us home with the diagnosis of laryngomalacia, saying that she would likely grow out of it by the time she was two. He did not think that her tonsils or adenoids were posing a problem, and said that she was too small for surgery, anyway. He wouldn't refer us for a sleep study, because he believed the floppy larynx was noisy but harmless. (I've since learned that laryngomalacia peaks at around 8 weeks, and should have been showing great improvement by 14 months. It's not a good sign when the doctor enters the exam room with a brochure about the diagnosis before he's examined the patient!)
I finally got our pediatrician to refer us directly to the sleep clinic, and in January, Claire and I spent a night in the sleep lab.
Claire equipped for her sleep study.We were stunned to get the results: 17 apnea events per hour, 46 of which were central (brain-based) apnea! Every time she stops breathing, her brain has to wake her up a little bit, causing her sleep to be inadequate, interrupted, and possibly even raising her baseline stress hormone levels. The sleep lab doctors wanted to get an MRI, but were reluctant to sedate a child whose breathing was so poor. So, our next stop was back to the ENTs to clear up the obstructive apnea. This time, I made a pest of myself so that Claire could get an appointment with a different ENT. Two weeks ago, we saw the chief of otolayrngology. He thought that Claire's tonsils were moderately large, and we were wisked right into a room for an X-ray and back again. Within a few minutes, he was able to show us how Claire's tonsils and adenoids narrow her airway. They're not huge, and probably not the source of all of the trouble, but yesterday, Claire had her tonsils and adenoids taken out.
The most likely scenario with her prematurity and reflux is that she has low muscle tone throughout her neck. Even though Claire's tonsils weren't significantly large, theoretically, anything that can be shaved away to make a little more room in her airway should help.
Since she was being sedated for the surgery, anyway, first she was taken for the MRI that will be the first step in identifying the problem with her central apnea. Two hypotheses are an Arnold-Chiari malformation in which the cerebellum pushes on the brain stem, and hydrocephalus of a ventricle. It's also possible that with enough obstructive sleep apnea, the brain gives up, and develops central apnea. We'll have to do another sleep study after she's recovered from her tonsillectomy.
Needless to say, we were anxious about the surgery, and recovery has been rough, so far. However, Claire's sleep has been awful for two years, impacting her ability to learn, grow, and enjoy being a toddler. We're eager to have an answer, and hopeful that the surgery will help and that any problems found in the MRI will be easily corrected.
Run faster, Daddy!
Claire with her best friend, Bella.
Cherry pie thief.
With "Aunt" Kate
