I’ll take the PET-MRI combo, please


Hot off the FDA release grill (and still steaming in my inbox where it arrived from a dear friend) is this interesting (if not phenominal) news. 


“The U.S. Food and Drug Administration today cleared the Siemens Biograph mMR system, the first device to simultaneously perform a positron emission tomography scan, commonly known as PET scan, and a magnetic resonance imaging (MRI) scan.

PET scans allow physicians to see how the organs and tissues inside the body are actually functioning by injecting a radioactive chemical tracer into the patient’s bloodstream. MRI uses magnetic fields and radiowaves to produce detailed images of organs, soft tissues, bone and other internal body structures.

Previously, physicians could use a PET and computer tomography (CT) scanner to image the body. Advantages of the Siemens Biograph mMR system over current systems include simultaneous imaging, reduced radiation dose, and increased soft tissue contrast.

"The Siemens PET/MRI system allows two tests to run simultaneously without having to move the patient to a different scanning system," Alberto Gutierrez, Ph.D., director of the Office of In Vitro Diagnostic Device Evaluation and Safety in the FDA’s Center for Devices and Radiological Health. "Minimizing changes in a patient's position between tests allows physicians to compare images more easily and helps them get the most accurate information possible."…read full report here


Wow.  I wonder how Trevor’s path to surgery would have panned out had we had access to such a beast as this?  Instead, I have a very vivid recollection of sitting in one of the two (not luxury) EEG suites at our local children’s hospital shortly after Trevy was weaned off his first round of Acthar gel.  His NOT A CURE BUT COSTS LIKE ONE treatment.  I held a sleeping 8 month old Trevy.  Swollen from all the hormone injections he’d just endured.  Jonathan wasn’t there.  Getting a coffee maybe?  When the Chief of Pedi Neurology boisterously (you’d have to meet the guy to get the full picture) tore into the room effectively splitting the hush in two.  I remember hoping like crazy he wouldn’t wake Trevy who I’d just lulled to sleep.  He didn’t seem to care even though any one who knows anything about collecting EEG data knows that sleep is the most essential time.  I was a little peeved.  He proceeded to tell me how Trevy’s EEG was still active in a region of the Left Hemisphere.  I’d already learned more than any parent should ever have to know about seizures and brain surgeries.  So hearing the word “focus” immediately sent my head spinning with ideas of surgical intervention should we need it.  I knew enough to know this could be a miracle for us.  The fine doctor tried to brush me off with a “lots of people have spikes on their EEG and lead normal lives!”  I wasn’t buying it (again…I knew too much and not enough all at the same time) and pushed back asking for a PET scan.  I’ll never forget his loud retort…


What?  You want to hack your kid’s head open?!


I was so young (these past three years have aged me 30, I swear).  Trevy was so little.  His Infantile Spasms path was just a blur, really.  Ahead totally unknown.  We were at the beginning of our Seizure Timeline.  I remember feeling my cheeks heat with a blush.  Embarrassed.  And angry.  I didn’t give up entirely.  Though I distinctly remembering Jonathan was there with me.  No one likes to go into battle alone.  I made him promise me that should Trevy’s seizures relapse he would give the green light on a PET scan.  He begrudgingly agreed.  To his benefit…I think he was convinced Trevy’s future gleamed bright and seizure free.  But God he is not.


And if I could transport back to that moment in that room holding that little baby but carrying in my heart and mind the knowledge I have today…


I would have emphatically responded…




Even though yes is far from the truth of what our hearts ever wanted for Trevy.  And yet…        


As our Seizure Timeline would march forward Trevy’s EEG moved from a focal point to foci.  From subclincial seizures to full blow Infantile Spasms relapse.  We did indeed get that promised PET scan.  And that PET scan agreed with those early Left sided EEGs.  Data which was essential in approving Trevy as a surgical candidate.  Essential pieces of our Nightmare Miracle journey. 


But I can’t help thinking how much easier it would have been had those early MRIs been combined with PET Scan technology in the first place.  How much precious developmental time could have been spared.  Would Trevy be speaking in sentences by now?  Or be potty trained!   


Oh well…


I’m not God either.  And I Believe He’s the Author of Trevy’s path.  I’m just really thankful that other parents may be spared the same agony of battle that I faced in that suffocating hospital room because the machine is equipped to accomplish both functions already.  A rescue mission shouldn’t be so hard.  I’m thankful that Science is continuing to provide new tools to make it less so. 


**editor’s note**  It occurred to me that I neglected to mention an important little tidbit.  Trevy’s MRIs have never reflected any helpful information.  They have been considered “clean”.  Other than the 3T MRI which revealed bi-lateral PVL.  Which was NOT helpful for surgical consideration and actually was a major reason why Boston declined him.  Hence my passion for the PET scan being easily available.  My passion for any and all testing to be accessible, really!**




JSmith5780 said...

Thanks for posting D. I love my FDA email, I get some very interesting news in there. I'll be sure to remember to pass along the good stuff... so you can post it for me :)

Mrs. M said...

Gah! No kidding!
I can't believe that neuro said that to you! What an...idiot!
Hindsight...it's an evil all of it's own. You, my friend, are an amazing momma and advocate always researching, knowing so much and willing to ask. A great inspiration to me.
Hopefully, this "new" PET & MRI combo will help other kiddos have answers sooner in their quest for better health.