The doctor prescribed the liquid correctly and sent it via computer to having the medication compounded at Good Day Pharmacy in September 2015. Rx: 0.03 mg/2 ml. In a liquid form. At the end of October I called in a refill. On October 31, 2015 at about 11:00 am, Jake received his first dose from the new bottle. Jake complained that the medicine tasted bad. Within 30 minutes of receiving the medication, Jake complained of feeling dizzy and fell asleep.
At about 11:35 am I called the pharmacy. A man answered the phone. I explained what had happened and asked if he could check if the medication was made correctly. He suggested that the bottle was maybe not shaken, and that my son had received a little more of the Clonidine. I was not comfortable with this answer.
I insisted to bring my son into to the pharmacy right away, and to show pharmacist, Joseph Poling, that Jake was in a deep sleep. Joseph Poling turned us away and told me, “We did not shake the bottle.” I knew the pharmacy was about to close. I kept calling Joseph Poling to inform him this does not sound right. Again I called the pharmacy and asked, “If the prescription had been made correctly?” He told me, “yes, according to the log book it was made correctly.” The pharmacy was closing at noon. The pharmacy manager Joseph Poling and a pharmacist, advised me on the phone to let Jake sleep for a couple of hours and watch him, and that according to the log the prescription was made correctly. I was told again, you must not have shaken the bottle enough. The pharmacy manager said, if Jake did not improve after a couple of hours sleeping to contact his doctor.
Jake was watched very closely while he slept over the next couple of hours. It was Halloween, one of Jake’s favorite holidays. (Jake never got to wear his costume.) Jake didn’t wake up, in fact, he fell into a deeper sleep. I pinched his feet and hands and there was no response. I knew it had to be the new bottle of Clonidine! I tasted the tip of the bottle and it burned my tongue!
We immediately went to MCR emergency room. I rushed Jake in, carrying my unconscious son in my arms, unresponsive. An intravenous catheter was placed and initial labs were drawn.
It was becoming apparent at that time that my son was having a serious medical emergency. I informed the doctors there was something seriously wrong with his new bottle of Clonidine. I was told that the liquid was already adsorbed in Jake’s system, and no activated charcoal could be used. No vomiting was induced.
The decision was made to transfer him to Poudre Valley Hospital pediatric care unit. He was transported by ambulance, and we arrived about 7 pm. At this time, my son was in a catatonic state that soon went into a cycle of violent and frightening hallucinations. Every 15 to 20 minutes he would come out of his coma like state screaming in fear and unaware of his surroundings. He was seeing gruesome monsters trying to attack him and hurt him.
Jake had to be held to prevent him from pulling off the leads during these terrifying episodes. His vital signs were highly irregular during this time. I started asking, if there was a way to have the pharmacy opened.
At approximately 3:00 am November 1. 2015. I was holding my son. He had a grand mal seizure lasting about 3 minutes. It was one of the most frightening things I have ever seen. Until this past June, when we I saw him suffer for 7 hours and die! The decision was made by the doctor on staff to have my son transported by “Flight for Life” to Children’s Hospital Colorado Anschutz medical campus . My son was given Ativan to prevent seizures and outbursts on the flight.
During the flight, around 4 am, I left a message on Good Day’s Pharmacy’s voice mail, demanding they find what the error was in the prescription. I was screaming on the phone,”There is something wrong with the prescription you made for him!” When we arrived at the intensive care unit. Jake was subjected to another battery of tests, including his first Cat Scan. His condition continued to deteriorate. He was placed on an EEG to monitor his brain waves to check for hidden seizure activity. I WAS DEMANDING EVERY 15 MINUTES FOR SOMEONE TO PICK UP THE PHONE AND CALL THE PHARMACY AND FIND OUT WHAT WAS IN THE BOTTLE! (no emergency after hours number was on the voicemail)
I asked many, many, times about reversals for Clonidine. I kept getting told, there was none. I even went to the hospital library to use their computer, and I went outside to find a stronger signal for my cell phone. In my profession, we reverse patients and detox them after overdoses. I found very quickly, that Narcan/naloxone has been used in clonidine overdoses in the past in several well cited publications. I quickly started asking the doctors, if we could use Narcan. I was told, “no”. Over and over again.
Jake’s cycle of hallucinations and catatonic states continued. Eventually my son lost all ability to speak and would just scream in terror. A second Cat Scan was ordered and there was evidence of brain swelling. No words can explain the devastation we felt at that moment.
The doctors began to try to reverse the brain swelling with a hypertonic saline solution only. They did not use steroids to reduce the brain swelling, Why? Because no one would pick up the phone and have the pharmacy opened. Not one single doctor even considered Narcan. The hospital didn’t want to use steroids, because they continued to assume it must be an infection. One phone call would have stopped this! Since, the pharmacy was closed (and no one would pick up the phone to have the pharmacy opened)with no way to confirm the contents of the prescription my son was subjected to many unnecessary painful tests to rule out other causes. Even with no history of illness, Meningitis was still in their minds, again with no prior symptoms. The decision was made to treat Jake with the antibiotics for this. These antibiotics had risk to my son’s kidney’s and his blood work had to be monitored closely.
In the early evening of November 1, 2015. The doctors informed me that Jake’s sinus node was failing and that they needed to start a drug to regain a normal heart rhythm, but Jake’s condition continued to decline. Later that morning, when an actual cardiologist was on duty we were informed that the medication was not necessary, it was his heart normal response to protect itself. The medication was stopped.
About 8:00pm that evening, Amy Clevenger DR.0054027, decided an MRI and a lumbar tap were needed to see why Jake was not improving. Late that night Jake was sedated and an intubation tube was placed to maintain Jake’s airway for the MRI and lumbar puncture.
The lumbar puncture was delayed for over an hour with my son intubated in the room, because the staff got busy. They were also waiting for an attending physician or student to show up, to show them how to correctly do a lumbar puncture. At times, my son was left without medical supervision while he was under intubation, sometimes without even a nurse at the desk and, only me to monitor my own child under anesthesia.
At about 2:00 am November 2, 2015 Amy Clevenger informed us, that Jake had abnormal areas in the brain that could be consistent with a condition known as “PRES”, caused by sudden and traumatic injury to the brain, or a rare degenerative demyelinating sheath disorder.
Both of which could mean my son would never be normal again and may not survive. (Just to inform the public, drug overdoses can cause “PRES”) It was a pain that I could not describe.
I was shattered into a million pieces. I SCREAMED AT AMY CLEVENGER OVER AND OVER ”NO IT IS THE CLONIDINE! STOP CHASING ZEBRAS, STOP TREATING AND TORTURING MY SON FOR THE WRONG THING! IT IS THE CLONIDINE!” I BEGGED, “JUST PICK UP THE PHONE AND WAKE UP THE PHARMACY OWNERS.”
I could not imagine how we could leave the hospital without my bright beautiful boy.
Would I never hear his sweet voice again.
How he would never speak or know who I was. It was the darkest moment of my life, one that I relive every hour of everyday! Now replaced by the memory of the horrific day he died .
I went back into the room and I crawled into bed with my son and held him close.
I kept saying to him,”I needed him and to fight! How much I needed and loved him.”
A few hours went by and Jake started to slowly respond.
**I felt him move, I looked down and Jake said, “Hi Mommy” The single greatest moment of my life.
I could not believe it!!!**
At about 1:00pm I believe. I received a call from Good Day Pharmacy.
The same man I had spoken to on Saturday. He then told me the mistake that had been made. The prescription had been compounded at 1000 times the proper dose. Not 0.03 mg per 2 ml but, 30 mg per 2 ml we were told by Good Day it was made by, I could not even speak. At that point I realized how close I came to losing my son.
The horror occurred to me, that had this been a night time medication, I could have awakened to find my son dead in his bed.
The fear set in of what could be the long term damage to my son’s life?
I politely, thanked the man for delivering the news.
A few hours later Vicki Einhellig RPh, one of the pharmacy owners called to show her concern and express how bad the pharmacist felt Vicki said, it was Pharmacist Tomi Folkestad PHA 0015850. and that she was so good she used to work at PVH hospital. It was no comfort to me! SOMEONE had made the prescription 1000 times the concentration.
I spent every minute of every day wondering if my son would survive.
We were released on November 3, 2015 in the evening. with no follow up care needed at all! according to Children’s Hospital Colorado.
They did say, continued withdrawal symptoms would occur. I called both Jake’s pediatrician at the time and Children’s Hospital Colorado several times in the 72 hours and we got home. They also told me, I could resume Jake’s normal Clonidine dose. I never did! I consulted with the original prescribing doctor and asked, “Can we stop the use of Clonidine?”. He said, “Yes.” We refused to put our son on any drug after that. That Wednesday and Thursday Jake was vomiting and had the shakes. He had horrible pain from the lumbar tap. Yet again, I was transferred from the pediatrician’s office to CHC back and forth. One saying, I should call the other for answers.
My son was afraid to sleep alone after this. I was afraid to sleep at all.
He woke with nightmares almost every night. He was forever changed by this. AS WAS HIS MOTHER!