Working with the Medical Team

The discussion of medical procedures seems to come up very frequently in many of the Autism communities that I am in.  Parents of autistic kiddos try to share information as much as possible so that their child can have a good medical experience.  

I have a unique perspective on this issue as I am the parent of an Autistic girl, I am a pediatric nurse of 25+ years and I sedate children routinely for sedation procedures (MRI's, EEG's, bone marrow aspirations, lumbar punctures, etc.).  It's a trifecta of information!!  

If you're reading this and looking for some helpful info, please know that my HIGHEST recommendation is that you discuss any of these tips and tricks with your doctor and medical team.  Remember, YOU are part of that team as well and you know your child best.  That's my little disclaimer.  I'm not the "be all, end all" and have not conducted a double-blinded study.  I'm just a mom with some info that I am happy to share.




I would love to tell you that all medical personnel have endless information on autism and sensory disorders and can easily navigate through most issues.  However, I cannot tell you this at all.  I can tell you for certain we don't have all the information we need, because I was that same nurse.  I have loads of different understandings now because when my daughter was diagnosed, I read and researched everything I could get my hands on.  There was a ton of information I didn't know.  A pediatric nurse for 27 years and I couldn't tell you a thing about sensory processing disorder.  I have a whole different perspective now.  Most of us don't understand the connection between autism and the sensory issues. Because of this, I think it's important that as parents you're able to advocate for kiddos by knowing both languages.

So I've come up with a few tips that I hope will help your kid should they ever require sedation and anesthesia or be in the hospital environment.

• Just know you may have to explain a few things.  Please be patient, many of us are trying to bring our colleagues up to par, but it's going to take some time.  I always start with, "She's a sensory SEEKER, not avoider."  That begins the dialogue and complete understanding that Autism is DIFFERENT in every kid.
• Understand what a Child Life Specialist is and does.  Most Children's Hospitals have them on staff.  And many smaller hospitals are now seeing the benefit of having one.  The Child Life Council can introduce you to these services.  CLS's have many ideas, tips and tricks and they DO understand sensory stimulation and sensory issues.  My own personal nursing practice in pediatrics is not complete if there is not a CLS involved in procedures.
• Every parent (whether your child is neurotypical or autistic) needs to understand that laying down in the "crucifix position" and having a procedure done to you is OVER.  We have stopped doing that since the late 1980's and with damn good reason.  It's terrifying.  Would YOU want that done to you?     There are times that yes indeed what have to hold a kid down to complete a procedure where sedation is not an option (like an IV start, insertion of a foley catheter) but it is a LAST resort, not the first thing done.  And there is much prepping down beforehand with parents as well as with the kiddo.  
• How does that happen?   (see my Child Life Specialist comment).  There are also creams that can be put on the skin to numb it so the poke is not felt (that goes for vaccine shots too).  There are methods to hold a child so it's not so scary.....chest to chest with a parent or cuddled up on Mom's lap.  I know nurse friends that have changed offices of a beloved pediatrician because the nurses told her "no, you can't hold while we do the shot...it's not safe."  That's simply not true.  Spend time understanding what's called "positions of comfort" and you'll find one that probably will work for your child.
• When you are being sedated the worst parts are going under and coming back up.  I call it "going down the rabbit hole"  Your brain and body disconnect and it's a very uneasy feeling.  It's 200X that when you are not neurotypical or have a sensory issue.  Weighted objects can help!  A weighted blanket or a lead apron from the X-ray department works amazingly well to keep a kiddo feeling safe and secure and not so "floaty" when coming back out of the rabbit hole.  Remember, lead aprons cannot be in MRI suites but they can be in recovery. 

Floating down......

• When my daughter had her sedated MRI, I requested she be put directly on her beanbag chair from the MRI table.  The beanbag would give her some good sensory feedback.     I also explained that if she was having airway issues and couldn't be in that position immediately, I understood.  They told me as soon as they felt she could be in that position safely they would do it.  When I got to recovery with her, we then put the lead apron on her torso and legs.  She woke up without one tear and seemed to be waking up from a nice long nap.  There was zero stress.

MRI day -laying on bean bag and lead apron on legs

• Most sedating physicians and anesthesiologists (if not all), give a mild sedative orally prior to any beginning of the actual sedation.  Typically, a drug called Versed is used and is safe in the pediatric population.  The beautiful side effect of this drug (besides the one you want to make your kid feel woozy and drunk) is amnesia.  So, even if something is scary or "not so fun" the Versed puts cheese-holes in your memory.  It's a nice side effect.  We really want kids to have good experiences so they can build on those experiences.  Each kid brings a "baggage of experiences" with them every time they encounter medical professionals.  We really want that luggage full of good stuff and keep the bad stuff a distant memory.  
• Behavior changes may need evaluation from your doctor.  This is especially important if the kiddo is non-verbal.  Nea stims mostly in the evening time and it usually is spinning with an occasional head crash into the beanbag or couch.   Recently, she started banging her head much more frequently than usual and during an OT session she cried during swinging.  Those things are off the charts for her.   If her behavior was changing to include more headbanging, then her OT and I would deal with that.  But before we went down that road I wanted someone to look in her ears.  Your vestibular system (originating in your inner ear) is a sensory system.  If it's whacked out....yowsa.  In fact Nea did have fluid in her inner ear.  After a week's worth of an OTC decongestant...the head banging subsided.  
• These same notions apply when it comes to working with a dentist.  A pediatric dentist who specializes in special needs is worth their weight in gold!  If you do not have access to that resource, than have a discussion with the dentist prior to the appointment.  We use a lead apron (found in dental offices of course!) for teeth cleaning and flossing.  It works.  Lots of websites are out there with social stories for dental visits as well.

Communication is key.  And yes, for now you're going to have to help educate the medical professionals as you go along the way.  

The MRI Day

I can never express enough how grateful I am for the people in Nea's life.  We have been so blessed to have come across such amazing people who work tirelessly for her.  I know people say things like "you're an amazing Mama" and "what a great parent" and I appreciate the compliments.  However, I'm just Mom and I do the things I do because I love my daughter unconditionally. But there are real heroes in my child's life, and for that I have not enough words of thanks.

It's an interesting set of fear and emotions when your child is undergoing some sort of high risk procedure.  It's even more interesting when that procedure is done at the place you work every single day.  And it really is extraordinarily interesting when said procedure will be done in the department you work in and the people you work with side by side.

Believe me, I was scared.

I wasn't scared of the team.  I trusted the doctor, the nurses, the child life specialist,  the MRI techs, etc. in the whole process.  The problem is I knew too much and it was hard stopping my mind from jumping from A to Z.  The bottom line is we make sedation procedures very safe.  We monitor children very closely.  We have lots of expertise, knowledge and emergency training.  We put safeguards in place constantly.  But, things can still happen. Just because we read "the book", doesn't mean the kids do.

Nea's OT worked us in for an early therapy session prior to the MRI.  She put her in the swing, she put her in the ball pit, she pulled her around on the scooter.  Nea was very chilled by the time we left.  She also was hungry!  However, she couldn't have anything to eat and drink until her sedation procedure was over.

So what do you do with a hungry 2 y/o who you can't feed and you have 90 min to kill?

You take her to the park!!

When you take your kid to a hospital that focuses on kids....it makes all the difference.  When we were in the waiting room, the receptionist gave Nea a purple backpack of fun stuff like crayons, hand shakers, coloring books, etc.  It was the perfect distraction while I filled out paperwork!

Waiting to do the MRI

One of the kiddos that had just had his test done and now awake, came into the room with his parents.  He was really upset and crying.  Nea stopped her coloring and looked at him for a long while.  I explained to her that he was really sad but his Mamma and Poppa were helping him feel better.  She kept watching and finally said..."uhmm...its okay"

Wow.

We were taken to the prep room where Nea was checked over, vital signs done (she did great!), and the doc came to talk to me.  Admittedly, it's really kinda funny because the doc and I work closely together all the time and teach families about procedural sedation.  I let her off the hook and told her I didn't need the full 20min lesson. :-)

Versed is a great drug.  It makes you sleepy, pretty loopy and downright happy to be on the planet.  It also has an amazing side effect of amnesia.  So even if things became unpleasant for Nea, she would never remember.  Why is that important?  It's important (and not just for her, but for every kid) that she is able to build positive experiences.  It's important that she has a trusting relationship with medical staff and that she not fear them.  We CAN make things pleasant for kids, and it's the right thing to do.  We have numbing lotion for IV starts, we let Mom or Dad hold a kid during an IV start or even putting in a catheter.  We can do some pretty cool stuff for kids, so that they have positive experiences.

Enter the Child Life Specialist.

It's an amazing profession.  Google it and understand who these people are and what they do.  In short, they make sure that kids are allowed to be kids and they are not overwhelmed.  They advocate for them so they minimize pain and fear.  They teach kids about their diagnosis in a language they understand.  And they make sure that trust is built.

Nea's IV was started relatively easily, and she went with one of the nurses to the MRI suite.  No tears, no fear, just snuggled right into her as she carried her into the room.  (Thanks Versed!).

I slipped back into the waiting room while they began sedating her.  I'm told she did well, no problems with sedation and went right to sleep.  The Child Life Specialist even told me, "She sighed deeply.....and drifted off."  My guess is that as the medication hit her system, it probably made her feel very heavy and that probably felt very good to her.

The scan was completed in an hour.  The Child Life Specialist and I had come up with a plan for waking up so that it was not scary and not stressful.  The bean bag, the weighted lead apron on her waist and legs, her own special blankie, and her paci.'s (one to chew and one to hold).

She woke up like no kid I've ever seen.  It was like she was waking up from a really nice nap.

Bean bag with lead apron

So, in recap Nea's day looked  like this to her......

"I saw my friend "A" and her cool play toys.  I went to the park for some fun with Mamma.  I met new people at Mamma's work.  The nice lady let me play with her iPad (must tell Poppa about that new app.).  The other nice lady let me snuggle with her (I was kinda sleepy).  I took a long nap.  I was able to get a wagon ride.  We came home and I ate fries."

Ernie was "the chosen one" for this experience

It was an amazing day.