A Not So Happy New Year

Do they get any cuter than this kid???

Greetings from Pennsylvania!  Thanks to Joe and Jacque (Adam's father and step-mother) for creating this forum which will allow me to bring many of you up to speed concerning the most recent developments in Ethan's diagnosis and subsequent updates as we undertake this endeavor. 

I suppose that I should begin with a history of how we have arrived at this place...  so let's begin in December of 2010.

For several years Ethan has struggled with concentration in school.  Many of his teachers had long maintained that he stood to benefit perhaps from ADD medication which might improve upon his focus.  This has been an issue since the 1st grade but Adam and I, having a background in the Mental Health industry, were a bit reluctant to give him any sort of psychotropic medication.  These teachers however were spot on when they indicated that as the years progressed, Ethan would become aware of his limitations and that it might lead to frustration on his end as his peers began to pull away from him academically.   Sure enough, late last fall, Ethan had grown very disenfranchised with school and all but loathed having to complete his homework.  He was clearly disappointed in his handwriting skills, which seemed to only add to his anxiety during the homework routine.  It was at this point that we approached Ethan... to determine if in fact he could sense a growing academic chasm between he and his classmates.  He acknowledged his frustration and after discussing a pharmaceutical intervention, he was eager to give it a try. 

We then took these concerns to our pediatrician, Dr. Jordan Spivak.  We completed the appropriate paperwork, surveys, questionnaires... and Ethan's scores did indicate that he probably was suffering from ADD (Attention Deficit Disorder).  We also discussed with Dr. Spivak that a possible Aspberger's diagnosis had been tossed around following psychological evaluations at the school.  Because we had never received a formal diagnosis, Dr. Spivak thought it would be best to refer Ethan to a Child Guidance Center here in Coatesville, PA.  But in the meantime, we were prescribed a low dose of Adderall XR.  Dr. Spivack indicated that this medication would be out of his system by bedtime if it was taken early enough in the morning.  He also informed us that on days that Ethan was NOT in school, he did not have to take the medication.  That it did not have to "build up" in his system to be therapeutic.

We began this medication only a few days before the Christmas holiday.  Everything seemed fine.  However, over the holiday, he did not receive the medication.

We had a great Christmas.... 

On January 4th, Ethan returned to Bradford Heights Elementary School, where he is in the 3rd grade.  It was during the 1st week of January that he began taking this medication in earnest.  Within days, his sleep patterns had completely changed.  Prior to taking this medication, Ethan had been the type of child who would promptly retreat to his bedroom around 8 p.m., change into his jammies, and who would sleep soundly for a solid 10 hours.  Well, those days are now gone.   Maybe 10 days after taking the medication, Ethan became very paranoid after crawling into bed.  Every noise (both real and perceived) had to be investigated.  This occurred at both my home and at Adam's home.  We really had room for concern when Ethan approached Adam to inform him that "he had seen his toys moving, despite knowing that things like that shouldn't happen".  Adam reported these symptoms to me, and I was of the opinion that the medication should immediately be stopped.  I quickly began a search online, only to learn that the FDA had issued warnings about hallucinations and these medications.  We again contacted his pediatrician with our concerns and he believed we could try a different medication, Concerta. 

Ethan took this medication for ONE DAY.  On the evening of the day he took the Conerta, Ethan reported to me that he was seeing a man at school, wearing blue jeans, a white and red striped shirt with a gold belt buckle.  He said the man was tall, thin and always carrying a hammer.  He said he first saw him sitting at the base of the stairs on the first floor of the school.  Then he saw him over the coming days in the hallway of the school.  He said sometimes he would be at the near end of the hallway, and then he would sort of flash and be at the other end of the hallway.  Well - you can imagine my horror with this level of detail.  That night Ethan slept with me, if you could qualify it as that.  He tossed, he turned, he cried, he wet the bed...  he was as rigid as a stick.  I could only think to myself... WHAT HAVE WE DONE.

Body of the car, before the wheels.  Totally his idea.

It was my hope that by discontinuing the medication, that these symptoms would abate.  But they did not (initially).  Now off all medication, we headed into out much anticipated Pinewood Derby weekend.  Ethan is a Cub Scout and he enjoys being a Cub Scout more than anything.  this year, he elected to make his Pinewood Derby Car into a Hershey Bar.  We were up early that Saturday morning in the beginning of February, and Ethan was anxious to get going.  BUT, before we left, he complained of having a bad headache.  I gave him two Tylenol, and out the door we went.  I watched him in the car, and I could see that he was still in pain.  We arrived at the Derby, but despite his enthusiasm, he looked uncomfortable.  Within 30 minutes, he was in tears from the headache.  So much so that Adam had to leave the Derby to run home and retrieve

Although it didn't win a single race, he won most original car.

That following Wednesday, we received a call from the school.  Ethan had another headache.  He appeared confused and was struggling to remember his teacher's name and was not responding in context when asked particular questions.  We immediately called the pediatrician's office.  Our usual physician did not have hours that day, so we were given an appointment with our NEW HERO, Dr. Sandra Burns. 

Thank god for Dr. Burns.  When we met with her, and provided her with the entire history, she was shocked that her fellow pediatrician (Dr. Spivak) had not referred us to CHOP (Children's Hospital of Philadelphia). She felt that Ethan should have an MRI completed to rule out any pathology.  We were in complete agreement. She said to us, "If this were my son, he would have already been seen by now at CHOP".

She gave us a script for an MRI, and the number of who were to contact at CHOP and sent us on out way.  But it must have weighed on her mind a bit that evening, for the next morning she arrived at her office and called CHOP herself.  The CHOP team felt Ethan should be seen immediately.  She contacted Adam and I and within hours we were in the ER at CHOP. 

Our first CHOP visit

Ethan was seen by an ER physician, a developmental pediatrician, two psychiatrists and a Neurology consult was scheduled.  The team conferred and said that this could be a number of things from a psych disorder, to Aspbergers, to a metabolic disease....  but we were only at the beginning of what could be a very long road.  However, they included Dr. Burns in their treatment plans ans she STILL insisted upon the MRI which was not performed at CHOP that day.  So, we left, and immediately scheduled the MRI for February 15th. 

By the time February 15th arrived, the hallucinations were now gone, the headaches were gone, and Ethan was doing much better overall.  He is still fearful at bedtime, but we ascribe this to a residual anxiety surrounding the hallucinations he was having at bedtime. The MRI took place at CHOP Pediatric Imaging Center in King of Prussia, PA.  They had intended to sedate him, but the radiologist who met with Ethan thought that he was an excellent candidate to forgo the sedation.  Ethan quickly grasped the importance of holding still and assured us he could do it.  And he did.  I was allowed to sit in on the MRI and my little "bug" didn't move a muscle.  SO we left the MRI and went directly to the Cheesecake Factory, thinking that all of this would soon be a thing of the past. 

We couldn't have been any more wrong.