Saturday, July 1, 2017

Doctor Appointments with Down Syndrome

Every summer our visits to the doctor increase.  It seems more likely they would in winter, but for us summer is when I schedule well-child check-ups and any extra appointments like yearly eye exams for my glasses-wearing children.

Recently, at a two for one visit, Joseph and Maria had their well-child check-ups.  I was just being me, when their doctor referred to me as a Gentle Steamroller.  I'll get to that in a bit.

According to the National Down Syndrome Society, Joseph needs extra doctor appointments specifically related to issues known to become problematic for people with Down syndrome.  Thyroid checks, neck x-rays, hearing and eye exams, sleep studies, cardiac check-ups - these are all medical issues that need to be addressed.

This handy guide from NDSS lists the recommended health care needs of children with Down syndrome by age.  I refer to this each summer when Joseph visits his primary care doctor for a well-child check-up.

Checking my list is the easy part.

Children with Down syndrome often do not like to be touched or poked upon in any way, shape, or form when it comes to doctors.  Children with Down syndrome also have increased hypotonia (low muscle tone) and for some reason this hypotonia allows them to get their bodies into contortions of epic proportion.  These said contortions make it nearly impossible for a one-poke blood draw.  Measuring blood pressure?  Again, nearly impossible.  Joseph can twist his arm within the ballooned cuff, making the medical assistant work for every dollar she makes.  And eye exams?  Better eat my Wheaties that morning.

I've endured my share of doctor appointments over the years.  Eye appointments, hearing exams, echo cardiograms, weight checks, x-rays, vaccines, blood draws, ear checks, oh the ear checks of toddler days.

I've developed my mom at the doctor style, relived my cheerleader days, and learned a few tricks along the way.  In case you find yourself needing to take a child with Down syndrome to the doctor, I'll share with you what I've learned to date.  I'm sure these tips can be used for any child, I just happen to have learned them by being Joseph's mom.

What I Know About Taking a Child with Down Syndrome to the Doctor

#1 - Joseph is closing in on 9 years old in August and doctor appts. have gotten MUCH MUCH better.  Not great, but better.  It's been a long and bumpy road getting to this point, which is still NOT great.  As Joseph matures so does his behavior and understanding of what's happening at the doctor.

Here's a year by year account of blood draws.  It's not for the squeamish.

Birth - 1 year (2 phlebotomists and me)
Blood draws were miserable.  His hypotonia, tiny, rolling veins, and weakness was almost unbearable.  Three to four pokes was the norm before getting a "good vein".  He was so tiny and easily held still, but his weak cry brought tears to my eyes every time.  I  knew it must be hurting, but he hardly had the energy to let us know.

1-3 years (2 phlebotomists and me)
His heart nice and strong now, he was strong and loud.  He could wiggle out of every hold.  The phlebotomist would always have an assistant holding his elbow.  The needle would go in, he'd wiggle his shoulder and the vein would be gone.  Every time we went in for a blood draw the phlebotomists were amazed.  A couple of the girls actually had nicknames for him like Houdini and Mr. Magic because he could get his elbow out of any hold.

3-5 years (2 phlebotomists and me)
Blood draws were rare in this time period.  I don't have much recollection of what it was like.

5 years - current (3 phlebotomists and me)
Joseph was having a lot of intestinal troubles during this time, i.e. severe constipation which eventually led us to see an endocrinologist.  He checked his TSH and found him to have hypothyroidism.  The blood draws quickly increased to every 2 months.  Joseph is VERY strong and will fight without abandon.  A particularly difficult blood draw was last summer.  We wrapped him in a sheet, one assistant took care of his legs, I had him on my lap with his head locked in under my chin and bear hugging him.  The other 2 phlebotomists were in charge of the actual blood draw.  He was not going to give up; we were all sweating terribly.  And then another angel nurse directed a fan right on us.  That tiny distraction was just enough that the poke "took" and within minutes we were outta there.

We've endured our share of blood draws similar to the one I just shared.  At the last blood draw we dropped back down to only 2 phlebotomists and me.  We are making progress.  Joseph is making progress.  Life is good.

Take heart, mama and daddy of a child with Down syndrome, doctor appointments will get easier.  Time and maturity do so much in the way of easing a child's anxiety.

#2 - Practice, practice, practice!  Play doctor at home.  Does that need much explanation?  In the toddler years shine a flashlight into your child's ears, have them say "aahh" after brushing their teeth, tap and activate their knee reflexes while getting them dressed.  Basically, do doctor and dentist stuff at home as often as possible.  New experiences cause freak outs.  Don't let the doctor's actions be new.  Give your child plenty of opportunities for practice at home.

Now that Joseph is older and can understand my explanations better, I talk about the doctor a lot at home.  A couple days before an appointment I start sharing all the things I can think of that the medical assistant and doctor will be doing to him.  For example before an endocrine appt. I'll tell Joe that he's going to step on the giant scale and his height will be measured up against the wall.  I remind him what it feels like to have his blood pressure taken.  Then we take turns squeezing each other's arm as hard as we can.  I show him how to feel my pulse; then I feel his.  I feel his thyroid gland and tell him how the doctor will feel his neck to see how big or small his thyroid gland is.  He'll have to let the doctor push on his tummy.  I talk A LOT about what will happen.


#3 - Leave the fussy clothes on the hanger and opt for comfortable, easy on/off clothing.  This is so important.  And it makes total sense, right?  I like to schedule multiple appointments in one day.  That means lots of on and off of the clothing.  I have Joseph wear his most comfy, elastic waist shorts or pants with a favorite t-shirt or hoodie (depending on the season).  I keep my outfit simple, too.  If a wrestling match breaks out, I want to be ready.

#4 - Learn to be a Gentle Steamroller.  I've practiced every possible doctor office scenario, talked myself to sleep about what'll be going down at the doctor, and dressed Joe in comfy clothes.  Now we're there and he's decided that no way, no how is the doctor going to touch his thyroid gland.  My standby line has always been, (said in the sweetest Michelle Duggar voice)  "you need to cooperate or I'll force you".  That's what I said when Joe's pediatrician referred to me as a Gentle Steamroller.  A compliment, I think.  I guess it basically means I will not take "no" as an answer from my kids.

I've also taught Joe to say thank you to all the medical staff he encounters.  It's so sweet when he says thank you to the blood drawing phlebotomist as she places a band-aid in the crook of his arm.

I think having this mindset as the mom going into the doctor appointment reassures Joe that the exam is necessary and it's going to happen no matter what.  It's not optional; bad behavior will not get him a ticket to home.  My time is valuable and we'll get done what we came here to do.  Harsh?  No, just reality!

#5 - If you're gonna be a gentle steamroller then holding tightly is required.  In years past, before Joe accepted an ear exam, I had to hold him on my lap, one leg over his legs and one arm around his chest, the other forearm holding his head.  He wouldn't cooperate so I had to force him.  I've found that holding him as tight as I can to my chest is helpful.  Gradually I've been able to ease up on the tight holding.  Ear exams?  Now he asks for them.  Crazy, I know.

#6 - Encouraging words are vital.  On days when my emotions could easily get out of control, I find that pulling out my old cheerleader voice helps me get through the difficult exam.  Telling him how I expect him to act as if he's already acting that way sometimes gets results.  Does that make sense?  Talking him through it, talks me through it, too.  I say things to Joe like:

Wow!  Great job, Joseph.
You can do this.  You're strong.
You're such a good boy.  Look how still you can sit for Dr. _______
Awesome job!  You can let Dr. ________ touch your tummy.
Show the doctor how wide you can open your mouth.
Great!  You can tell Dad how much you weigh.

#7 - Pray without ceasing.  One thing I love about the Catholic faith is memorized prayer.  My favorite is the Memorare.  It is the perfect prayer in tough situations.  I often find myself not even thinking about prayer until the doctor visit isn't going so well.  And then the Memorare is the first prayer that pops to mind.

From Rosary Rendezvous
It never fails me.  NEVER.  EVER.

What would you add to this list?  What has helped ease the "pain" of doctor appointments for your child with Down syndrome?  I'd love to hear.