(This is a raw unedited 1st draft grammatically incorrect article/account but I wanted to get it out as soon as possible to hopefully save future children from the agony of adverse effects this drug Tamiflu brings.)
Let me tell you what just happened a few hours ago with some history.
My son started to have fever and chills approximately a day and a half ago. My wife was concerned during the first night and asked me to setup a pediatric appointment with Kaiser Permanente. First available time was 2:30pm.
During the night my wife battled the night giving him alternate anti-fever medications with Tylenol and Advil using children’s dosing. When his fever spiked, he awoke and told mommy that his feet was so cold. She always awoke with every fidget and massaged his feet. In the morning he remembered every episode during the night and nothing out of the ordinary came about.
As our appointment arrived our doctor suspected flu-like symptoms. Since it was late in the day, he asked me whether he should prescribe Tamiflu or perform a flu test since it takes about 3 hours for test results to come. By that time the hospital will be closed and also the pharmacy… but before I opted to get the prescription, I asked him whether there was any complications associated with Tamiflu. He says none whatsoever.
As we got our prescription from the pharmacy, I asked the pharmacist whether there are any complications that I need to know. She says that some kids can get “moody” and then she added “well kids are already moody from the flu”… So I sorta chuckled while leaving the pharmacy. (I missed my first warning sign!)
We picked up the prescription and my wife immediately called me to check on what happened as we were driving away. I told her that we just got the drug Tamiflu. My wife asked me what did the doctor say about any neurological events due to Tamiflu. I told her that the doctor says there is no problem with the drug. My wife immediately told me that she didn’t want to give our son the medication without knowing he had the flu or not.
So I grudgingly turned the car back and headed to the KP doctor’s office. I went in the office and told the receptionist that I’d like to see the doctor again. The nurse then led me and my son to the waiting room and the doctor came. I told him that I think it was better to have performed the test first rather than being prescribed first. I told him that my wife was concerned about the drug complications but he immediately told me that this drug should help with other viruses too. However he stopped short of completing his train of thought and looked at the computer. He told me that once the appointment is closed the system will not allow him to reopen the ticket since he says that KP will think he is “cheating” the system. I told him that I don’t mind opening another appointment but he says don’t worry about it.
Few minutes later the test was performed and he told me he’ll just add the test as an “addendum” to the appointment and we went home.
About 3 hours later around 7pm, I called KP and asked the nurse for the results of son’s flu test. She regrettably said it was positive and told me to practice good hygiene such as washing pillow cases and sheets, frequent hand washing and using Clorox wipes on the door knobs, etc.
I proceeded to tell her that I have Tamiflu that the doctor has prescribed. The nurse says that is wonderful!
I was very happy indeed that I received the drug beforehand and after the phone call, I immediately gave my son 10 ml of suspension dosing as the pharmacist had prescribed.
As I think back now as I write this, there were some signs that I missed that I now realize that the drug Tamiflu is an unsafe drug.
My two sons sleep in the same room but for the first time, my second son came to me and told me he couldn’t sleep because his brother was bothering him. I told him go back to sleep and soon he came out again. I told him to go downstairs and tell mom. I think about an hour has passed and she brought the little one to bed and I told my wife to stay with Justin in the same bed. She went out to wash up and I stayed with my son. I started to notice my son having strange eye movements where it seemed to be almost epileptic but without the tonic-clonic movements… All of the sudden my son screams out where is Jonathan? and I told him that he is sleeping on the other bed. He then repeats the same question and I told him again the same answer. Next his eyes become wide open and tells me there is nothing in his head and mixed words saying there are holes in his teeth, stay with him – immediately I held him tight and told him that daddy is here. Mom will be here soon…. so I called to immediately come to the room. My son continued to say strange words almost as if he was in a state of delirium or night terror, creating faces that made me really scared. This was the first time this had ever happened – I knew immediately that this was an adverse effect of the drug that NO ONE told me about except my wife. As a medical graduate, it was in my blood to trust the FDA guidelines and accepted drugs. A slew of thoughts overwhelmed my mind – FDA do make mistakes – RU486 and birth defects came to mind. As I was holding my child I just told him that daddy is here and we proceeded to the bathroom to wash his face. I decided to go downstairs to the living room because our little one was sleeping and I wanted to further calm my son down. He came to his senses and using my medical knowledge, I started to get ice packs to cool his core body temperature down. After his mood stabilized and my wife sat next to him, I proceeded to call KP nurse. I was highly stressed and she knew it too. I told her what happened. In short she said she needed to talk with a doctor.
The doctor recommended to come to urgent care or call 911. I asked to talk with the doctor but due to protocol this was not possible. The doctor even refused to talk with me since it was protocol. Only one thing came to my mind is that she didn’t want to be liable for any wrong thing that may have happened. How can a doctor “refuse medical treatment” and corrected my word with “CONSULT” I asked? The nurse empathized with me but said it was protocol. She says I have to choose between urgent care or call 911. I asked her specifically whether there was a pediatrician on call or someone who knows something about Tamiflu. In short the answer was no. I declined and told her I will take care of my son and if there are problems, I will call back.
We brought our son back to his bed and had ice packs on the neck, head and armpits. He kept on telling us that he was cold and we just kept reassuring him and all… As soon as he went to sleep, I immediately started to search the web and found an article by Bonnie Rothman explaining the almost the exact same episode we had experienced. Immediately I emailed her and asked her for some help. I began to ask close friends and relatives to pray for our little boy too. But soon after an hour later he had the similar episode – screaming and saying something like he was in the sky over there, it was at that time I had the guts to try to record him with my phone… but I realized my phone crashed or maybe it didn’t …. to this minute I haven’t reopened the phone to see the video fearing that it may not have recorded… but actually fearing to re-remember the horrifying look on my son’s face that has so vividly burned into my head. We brought him back to the living room and once again calmed him down…. I just held my 6 year old son like a baby and told him “daddy is sorry, daddy is sorry, daddy is sorry….” over and over again while he was terrified in fear saying incomprehensible things. After about 5 minutes he came back to his senses and my wife asked him some questions and he came back to reality by even telling us the time was almost 1:15am. My wife looked at the clock and it was 1:13am. We knew he came back to us again.
I decided to write to my blog and right now it is 2:46am at this point in writing. I decided to do some research on the internet and got scared reading from some of people’s comments from Askapatient and from others. I started to write my experience down which is what is happening at this moment. A feeling of betrayal from my medical background but more of anger at the doctor for telling me that the drug was safe.
As I write, I have one ear outside just in case my son have the same episode again so I am ready to run to him. Just now I just checked on him finding my wife and him sleeping head to head on the living room couch. Hang in there Justin… hang in there.
Some links to the images and sites that terrified me – what is a father to do…
It is 3:26am right now… just a few minutes ago… my son started to whimper and started to cry out something about his little brother… his eyes were wide open and pointing at something in the air. I started to rub his back and told him everything is okay. His body was warm to the touch… which led me to cross out that high fever is the cause of his neurological symptoms. He awoke back to reality and now he is asleep again…
Justin… daddy is so so sorry. Hang in there.