7 - Second Opinion

The seizures were under control. What a relief...but I wasn't relieved.  My bouncy baby boy was so drugged and catatonic that I couldn't stand it. It was like he was locked away inside his little body and could not get out.

The doctor stated that it was either this or seizures.  Literally those were my options.  Something would not let that settle with me.  I decided to get a second opinion.  I did a web search and found the names of the new neuro team out of Texas that had just moved our Le Bonheur Children’s Hospital. I called my nurse for assistance in the proper way to obtain a second opinion.

During my doctor’s rounds I told him that I planned to obtain a second opinion.  He asked why and he thought I was happy that the seizures were arrested.  I explained that I was relieved that the seizures were no longer evident, but that the heavy sedation would leave him unable to develop beyond his current state.  The doctor said, “Fine.”  He then left the room.  My parents looked at me and I just told them I felt that I was making the right choice.

My logic behind getting the second opinion was this:  If the new doctor suggests we do anything differently and/or addresses the developmental concerns…I would go with the new doctor.  I then called the office of the Wheless Neurology Group.  They soon sent Dr. Dave Clarke to evaluate my son, review his records and then meet with me.

Dr. Clarke suggested reductions in meds, noted the obvious lestlessness and reasons why and what should be done to provide a better quality of life.  I was sold immediately.
We made the change that day. 

The first order was to stop one drug immediately and run tests to determine the root cause and rule out the most life threatening possibilities.  After MRI’s, brain scans and a multitude of blood and urine test the results were in.  The doctor was able to rule out tumors, lesions, trauma, etc.  It was then that the infantile spasms were conclusive.

We were then ready to be released from the hospital.  Or so we thought!  Our insurer refused to cover the ACTHAR drug.  It cost about $1,200 for a small vile of gel that I had to inject into my son’s thighs twice daily.  Dr. Clarke stated this drug was critical and he would not release my son from the hospital without it after about 24 hours of phone calls and faxes we were released from the hospital.