Well-child visits. The special needs version.

This morning I took both Charlie and William to the pediatrician’s office for their four and two-year well-child check-ups.  My logic for scheduling both appointments at the same time went something like this; if you’re going to lock yourself into a room for an hour and a half with two small children, limited snacks, books and toys it might as well be productive.

And it was.

While William did his best version of I’m a two year-old and I’ll prove it with this massive temper tantrum, I was able to cover my detailed list of questions with our ever so patient pediatrician.  Armed with my up-dated copy of the American Academy of Pediatrics: Health supervision for children with Down syndrome, we worked our way through the revised guidelines.  We agreed on what lab work needed to be done, I told him that we had recently been to the dentist and were able to both count Charlie’s teeth and get some fluoride on them.  We received a referral for his annual hearing screening {even though we have established a solid baseline for Charlie’s hearing – which for now is normal – it is recommended to still screen annually.}  And I’ll give the eye doctor a call later this week to schedule Charlie’s annual eye exam as that too can change from year to year.

Two topics that we really spent some time on included scheduling a sleep study and the reliability of the atlantoaxial instability screening.  I know that the atlantoaxial instability screening is a hot-topic right now.  In their new guidelines, the American Academy of Pediatrics no longer recommends routine radiologic evaluations of the cervical spine in asymptomatic children.

I’m not even going to pretend to play a doctor here, but I’ll do my best in simple human terms to explain why we decided at this time not to order this evaluation for Charlie.  At this time the radiologic evaluations {x-ray for us simple humans} don’t provide accurate enough pictures to totally prove that your child might have atlantoaxial instability.  Some x-rays might even show cause for concern, when in all reality your child is fine.  Doctors have found that the best way to predict if your child has atlantoaxial instability is through parental observation.  {Talk about pressure!}  Symptoms include; a change in gait or use of arms or hands, change in bowel or bladder function, neck pain, stiff neck, head tilt, or a change in general function or weakness.  Basically if you find that your child is regressing, get them to a doctor.

If you find this confusing, take heart, I had my doctor literally draw me a picture, the spine, the whole thing.  Maybe add it to your list of questions next time you are scheduled for an appointment?  I think this will be a big topic for a while.  My doctor also said that it will most likely take some time for organizations {think special olympics, gymnastics classes, etc.} to catch up to this new way of thinking, not screening just to screen.  Most will probably stick to their x-ray requirements, not because it’s really necessary, but more to protect themselves legally.  Isn’t that the new healthcare way? Medical care based on fear of lawsuits…think prenatal testing, unnecessary lab work, etc.  Ugg.

Whew.  One small decision down, one more to go.

Sleep study.  Another new recommendation from the American Academy of Pediatrics {AAP?} is that all children with Down syndrome should be refered to a pediatric sleep laboratory for a sleep study at the age of four.  While Charlie doesn’t snore or have sleep apnea {that we are aware of} he does seem to wake frequently and often seems to sleep restlessly.  While this might not be a big deal for some kids, for children with Down syndrome, studies are showing that many of the cognitive delays that are commonly associated with DS, might actually be the result of poor sleep habits.  {read more here and here.}  So we’ll head off to Seattle, probably sometime in the spring since scheduling seems to be a bit back-logged.

We then proceeded to have a *typical* appointment.  A checking of the ears, eyes, heartbeat, say ahhh, flu shots, booster shots, the whole shebang, for both boys.  We also paused in acknowledgement that yes, William’s rash is still there.  Hmmm.  Of course later I realize I forgot to ask about up-dating Charlie’s orthodics, and the doctor’s opinion on speech therapy.  Oh well, there’s always next time.

We had a blessedly long dry spell without any appointments or lab visits, and now my calendar is filling back up.  Admittedly I don’t like this *part.*

So yes, all things considered, it went well.

My only regret is that I didn’t pack enough snacks.

What do your doctor’s appointments look like?  Do you bring in a long and detailed list of questions like me?

{For my memory}

Charlie’s 4 year-old stats:

Height: 39 inches {19% as compared to *typical* kiddos, I don’t have my DS conversion chart handy…}

Weight: 32 pounds {14%}

William’s 2 year-old stats:

Height:  34 1/4 inches {41%}

Weight:  26 pounds {23%}

Head Circumference:  49 cm {57%}

Hmmm…looks like these two might be sharing clothes soon….


One thought on “Well-child visits. The special needs version.

  1. Pingback: Charlie. | Blessings and Glory

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