To Sedate or Not to Sedate-MRI Talk

 

It's tough to decide on whether or not to sedate your child during their MRI--Some children do just fine laying still for the procedure, while others may require medication to help them relax (or sleep).  So how do you know?

Will my child need to be sedated?

Rachel is 8 and has NF1 and sensory integration disorder, so we thought there would be NO WAY for her to do an un-sedated MRI, but as of this year, (with LOTS of practice and praising) she no longer uses sedation, to get through the 45 minute scan.

Several factors are considered when determining if a child will need sedation, including:

•    The age and developmental level of child (You know your child best!)
•    The length of time it takes to do the procedure (a typical scan runs from 45 minutes to an hour...COULD take longer)
•    The amount of discomfort expected during the procedure (Injections of contrast may have to be given during the scan)

We tried an un-sedated MRI for our now 14 yr old NF1 son.  Braden has ADD, and a pretty significant developmental delay.  The Drs. ordered a spinal and brain MRI, in the SAME appointment...BIG MISTAKE.

If you know the scan will be of different body parts, and you are going for un-sedated...Please take my word on this, and schedule the scans on different days!  Our poor son was laying in the MRI tube, for almost 4 hours!  (this was because Braden became very wiggly and uncomfortable--even with his favorite movie playing inside the tube..and the tech had to repeat many of the scans)

The scheduler will work with you to schedule the scans on different days, and even though doing it this way is very time consuming--trust me, you will be glad you took that extra time!

If you are a first timer...The following are some pros and cons, when it comes to sedation and MRI's.

**Side Note: If you choose sedation and your child has a tendency to wet the bed...It MAY be a good idea, to bring a pull-up, or change of clothes.  We learned this the hard way!

PROS for Sedation

*The child will be asleep and positioned by the MRI techs AFTER they are asleep

*The child will not remember the MRI experience or hear the noise

*No need to repeat scans, unless the tech feels something needs to be looked at more closely

*Less traumatizing 

CONS for Sedation

*Typically, you cannot be in the same room with your child if they are sedated...Sometimes ONE parent is allowed in the MRI room.

*Longer recovery time...It can take several hours, for the sedation to wear off...My kiddos took the entire day to recover as they were VERY sleepy and groggy afterwards.

*Cost.  Depending on insurance

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PROS for NON-Sedation

*Depending on location and availability--Your child can watch their favorite movie during the scan

*FAST recovery--Just scan and go!

*Since MRI's are a part of life for a person who has NF--the earlier you get them used to it..the better

*You can be in the room -- to comfort your child if needed

CONS for NON-Sedation

*The child could become afraid of the noise or uncomfortable in the closed in space

*Repeat scans are common, due to wiggling

*Longer Scan times

Basically, it's up to you...and how you think your child will handle the procedure...Some kids are just better, if you sedate them...Others, do really well without sedation.

At our home, we make a BIG DEAL out of MRI day.  The night before, we practice laying very still for 3 minutes at a time...If you wiggle, you have to start over.  If you make it the whole 3 minutes without a wiggle, you get a treat. (M&M, or other small piece of "treat")

 We talk about how important it is to stay very still, so the doctors can see their body nice and clear!  

I have even taken pictures with my camera....and wiggled it on purpose...to show my kids what it looks like to get a blurry picture.  We talk about how the doctors use these pictures to see if everything inside the body is okay...And if it isn't, the doctor will find ways to fix it.

MRI day is also special because the kids know that after they do an awesome job for the MRI tech...They will get some special treat for the ride home....(Yes, I bribe my children. I do what works, and it even sometimes works on my husband!)

The following is some GREAT info, that I found around the web!

How will my child be sedated?

In the majority of cases sedation is administered via an intravenous (IV) tube. Some infants — those under 2 years of age — occasionally can be sedated with oral medications. The sedation physicians will determine the way the child will be sedated on the day of the MRI. 

During the MRI

While the child is sedated and the MRI is taking place, he or she will be monitored constantly. Breathing, heart rate, blood-oxygen level and blood pressure will be tracked. In addition, the child will be watched on a camera in the MRI scanner. The nursing staff will report any movement to the doctor, in which case additional sedation may be needed.

The MRI usually lasts 30 to 60 minutes.

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What Is An MRI Like?


An MRI is LOUD!  Your child will wear ear plugs and special head phones to protect their hearing.  Even with those--the noise isn't pleasant.  If the child is watching a movie, the sound will go through the headphones.

The MRI physician and staff will be outside the room behind a large window where the equipment controls are located. They will be able to see the child through the window and a camera, and will constantly monitor the child during the procedure. If the child is not sedated, he or she will be given a device that can be used to let the staff know if he or she needs anything during the procedure.

After the procedure

Once the procedure is finished, the table will slide out of the scanner. If the child did not receive sedation medication, he or she can go home immediately. However, if the child was sedated, he or she will be monitored in the recovery area until the medication wears off and he or she is awake. Parents can remain with the child in the recovery area. If an IV was inserted, it will be taken out after the procedure and when the child is awake.

*Sedation or not...It's always best to talk to your child and prepare them for the experience.  

Have Faith.

In the game of life...the odds are often stacked against us.  Pressure. Fear. Anxiety, are knocking at your door.  You have a choice to make.  You can chose to doubt yourself and gripped by fear...or choose to believe you have what it takes to overcome it.

Today TWO of my children will be at the Children's Hospital in Aurora Colorado.  I am finding myself fearful of this visit.  My mind fluttering with "what ifs".

It's normal to fear...to dread the results of an upcoming medical tests...But what good does dreading it do?

I come from a LONG line of worriers, so it's only natural that I follow suit, right?  Nope!  I'm all about breaking the cycles I grew up with.

While I do still worry and dread....I don't make my life all about that.  It takes work to refocus your mind and to expect the best out of a seemingly hopeless situation....and without trying it, you may never know the true grace that can be brought to you by God.

Letting Go.

It's a tough thing to do.  I always seem to find myself in this tug-of-war with God.  I'll give Him my fear, anxiety and worries....but pull them back, thinking I can handle the stuff on my own.   Ya... a Tug-of-war with the most powerful being in the universe.  Crazy!

So today....while I do worry and fear the results from the MRI my daughter is going through....I will release it and give it all to God.  Only HE knows the results, and only HE can give me the ability to handle, whatever the results may be.

Today, my choice is to NOT be gripped by my fear.  Today, with God's help, I believe that fear has no power over me, or my children.  Today....I expect a miracle!

THRIVE ON!

Doctor Doctor...Give Me The News....Or Not.

I am REALLY good at talking about my kiddos and what they are experiencing, I am not so good however, in writing about my own "new news" and what's happening with me.

Since we moved to Colorado, we have been blessed to be surrounded by wonderful doctors who actually make NF their specialty.  My NF1 children are followed closely by a wonderful team of Drs at the Aurora Children's Hospital and never have trouble explaining their symptoms...They just "get it".

For me...Things have been a little different.  Since my NF1 diagnosis came so late in life, unfortunately so did any medical interventions.

Two years ago, I was diagnosed with hydrocephalus, enlarged ventricles and a brain tumor, and my follow-ups with Neurosurgeons and Neurologists have left me feeling helplessly frustrated.  "There's nothing we can do", "Neurofibromatosis doesn't cause pain", "Here's a pill"....Are all things I have heard from doctors who just didn't GET IT.

Even after we moved to this great state, where NF wasn't some strange "disease", I found myself being swallowed up by the ignorance that my first two doctors had.  The clinic I went to, told me I was just depressed and needed anti-depressants....."BUT....I came in here with a headache!!??"

I never went back to that clinic, and never filled my prescription for "anti-depressants".  I was on my own--AGAIN!  Something I have become an expert at is.....PUSHING BACK!

I am so tired of my symptoms being ignored...so tired of feeling like I am crazy.  Tired of doctors not listening to me.

I began seeing a new general doctor, who treats "normal people".  When I came to her with my NF, I was a prized patient, since she had never before seen an actual LIVING person with "Von Recklinghausen Disease"...(I politely corrected her, that it's not called that anymore)

She referred me to a Neurologist, who I just love!  This Dr. referred me to a Neurosurgeon, because of my complicated MRI and all my issues....who wasn't quite as lovable.  After 3 wks of leaving messages and having them ignored, I found my own Neurosurgeon...Who "GETS IT".  I am looking forward to having some of the 36 yrs of questions, answered...I don't expect miracles...But I do expect better than I have gotten!

I have also become a patient at the Aurora Adult NF Clinic, where I met with a team of Drs. who reviewed my medical history and have set the wheels in motion, to hopefully get some treatment.

I have become so involved with learning as much as I can about NF, so I can then teach my children AND share this information with my friends.  I am learning the NF doesn't really have a set of rules or guidelines.  Every single person with NF is affected in different ways.

I am learning that NO doctor can fit NF into a box, and tell you what to expect, because with this disorder, it's all up in the air.  I am learning that if I don't take my own health, and the health of my kids, into MY own hands, we will not get the right kind of care and treatment.

YOU...must become an expert of your OWN NF.....Not the NF of someone elses.   PUSH BACK...If you feel you are not getting what you need.  Don't be afraid to bring resources to your doctors that back up your symptoms.  FIGHT for yourself!  FIGHT for your kids!

Thrive On!

Rachel's Non-Sedated MRI

Rachel was so proud! No more sedated MRI's! This was a BIG day!

Chemotherapy

Our family is not afraid of going to the doctors.  In fact, we each look forward to it, all in our own ways.  For my children, it means they get mommy's undivided attention.  For me, it's a break--some alone time.  Even while trapped in an MRI, I find peaceful solitude.  I often drift off into a dream-like state and let my body become heavily relaxed.

I have tried so hard to never instill fear in my children, when going to the doctors.  We typically talk before we leave about what will be happening.  Shots.  MRI.  Ultrasound.  Or just a check-up.  I believe age-appropriate, full disclosure is the best way to let my kids know what may happen. 

But yesterday was different. We KNEW we were going to get bad news.  Even with the talk beforehand, there was no real way I could prepare Bailey with what the doctor would tell us.  

With changes in Bailey's symptoms and a report that there were "changes" in the recent MRI, I prepared Bailey, for what the doctor had suggested would be talked about at the appointment.  Chemotherapy.

But the blow, still hit us me hard.  The changes were not JUST changes, but a brand new tumor on a very sensitive and dangerous part of her brain.

When the doctor compared the MRI Bailey had in August 2010, then the one she had in February 2011, the doctor could see a hint of this tumor in the earlier scan...That she says, could have been mistaken for a vein.  

But the recent scan showed an M&M sized tumor on the Corpus Callosum.  This is the part of the brain, that connects the two halves together.

Bailey sat beside me unfazed.  I wasn't sure if she understood what was happening.  My eyes filled with tears as the doctor handed us a schedule and told us Bailey needed surgery to install the port. 

The port is a device placed under the surface of the skin to allow easy access to organs or the circulatory system for chemotherapy drugs.  We met with a really nice woman, who explained the whole process.

Bailey had a few questions and while we were waiting for the doctor to return, with a date for the surgery, I just held Bailey.  She didn't seem upset.  If it were me, I'd be a mess.  But I was a mess!  I was a mess for Bailey.

"Don't cry mommy.....God knows what he's doing, and I will be okay."

Man, this girl.  Here I was...a weak, sobbing mess.....and Bailey is uplifting me?  Again?  I wiped my tears and promised Bailey that I would be there for her, the entire time.  I praised my strong young lady.

"Will I get to miss school for this?"  she asks.  "Probably", I told her.  I told her that every week, after chemo, we'll go for a ice cream cone...that was good news to her, bad news for my growing waistline. :)

Whatever it is you are facing, you can find strength in the strangest of places.  Focusing on the problems (even the scary solutions to the problems) can wind up setting you back and facing you in a direction that will get you nowhere.

I always try to keep in my mind, that things could always be worse....and there are those out there facing far more scarier things.

We felt good when we leave the hospital.  We weren't told "There's nothing that can be done" or "Let's watch and wait".....we were given an answer....and for now....we will focus on that!

If you haven't already...head over to my daughters blog.  At 15 yrs old, she has quite a good outlook on things.  I am so so so proud of her! 

BAILEY'S BLOG

Thrive On!

Urology

Riley and I spent the morning at the Urology clinic and again got no real answers as to why the Urinary Track Infections keep happening.  We talked about night time wetting and how the Ditrapan  isn't working...and another Uro-Flow test.

In the next week, Riley will have a Urodynamics study at the main hospital.  This is a procedure that assesses how the bladder and urethra are performing their job of storing and releasing urine. Urodynamic tests help the doctor  see how well your bladder and sphincter muscles work and can help explain symptoms such as

• incontinence
• frequent urination
• sudden, strong urges to urinate
• problems starting a urine stream
• painful urination
• problems emptying your bladder completely
• recurrent urinary tract infections

I truly hope we can get answers...and treatment for both the UTI's and bed wetting.  I know how uncomfortable it is for Riley....and how she just wants to be "normal".


An MRI of the pelvic area is also on our schedule.....Riley was excited about this, because she says that now she can experience an MRI.  *fun fun*  :)