This happened nearly 10 years ago. I've never written about it.
But today I saw a news story and it prompted me to the tell my story:
I heard his gravelly voice behind me,
“Mommy, my head, my head hurts.”
I turned around to see my 5 year old son collapse to the floor of our family room. With his fists held tight to his temples.
I immediately went to him.
“What’s wrong, Baby?”
Through streams of tears, he told me about the pain in his head. Then he told me about the pain in his chest. Then he began vomiting.
I took his temperature and he had a fever.
I spent the day waiting to see where the symptoms would take us.
Stomach virus perhaps?
He laid on the couch for most of the afternoon. Then into the evening. Unusual during the middle of the summer – but there was no more crying, headache or vomiting…
…until the next day.
Then, it was the same thing. I heard my son scream for me – collapse to the floor holding his head…
I called the doctor and we went to be seen.
She examined him. “It’s a virus.”
We came home and headed into the weekend.
My son would retreat to his chair in front of the television. Curled up there for hours and hours. Eating and drinking little. Fever off and on.
Over the weekend, it happened again. “Mommy, my head. My chest.” Collapse. Vomit.
I called the doctor’s office. I questioned the virus theory. In my heart – I knew they were wrong.
No doctor’s available on Sunday. We drove to a nearby after hours clinic.
Exiting the car, he looked up at me – took my hand and told me his chest hurt. (I can still see that face and that moment as if it just happened.)
I assured him – we would be seeing a doctor – getting help soon.
They looked him over. Complete and thorough exam.
Diagnosis: Double ear infections.
<I wondered silently. But I did not speak up. I trusted them. After all, they looked in his ears.>
They gave him a dose of Tylenol on the spot. Handed me a scribbled prescription for an antibiotic.
As I turned to leave, I stopped to question.
“Why didn’t they see these ear infections a few days ago?”
At that moment, “Mommy, my head….”
My son collapses. Crying in pain at the doctor’s feet. Vomiting on the doctors.
I looked at them puzzled….”Ear infections?”
I was then accused of feeding him too much sugar
“How much sugar has he had today? The vomit reeks of sugar.”
I raised my voice, “There is something really WRONG with my son!!!”
It fell on deaf ears. They looked at me as if I had lost my mind.
He had had no sugar…
The explanations swirled.
“The ear infections made him think that his head hurts. He panics with pain and his heart races. He is vomiting from being off balance and sick to his stomach. Give him a day or two on the meds and he will be fine.”
“Okay.” But it’s not really and I know that. But what choice did I have? They were the doctors.
He takes the antibiotics for a day or so while he lies still in his red chair with his new puppy at his feet, desperately wanting to play. No energy. No interest.
I am busy with the younger children but I hear him…
“Mommy, my head! It’s happening again…” There is my son collapsed on the floor and vomiting.
I call our doctor. We return to the office.
I explain about the ear infections and the medicine.
The doctor checks him over again. The doctor looks puzzled.
“There are no ear infections. They look perfectly normal.”
“What do you mean?”
“No ear infections.”
“Why did they tell me he had them?”
They didn’t know.
Again – emotionally charged I yell, “There is something really WRONG with my son!”
Again – I am told it must be a bad virus. I am cautioned not to give him any dairy products too soon to upset his stomach and to discontinue the antibiotics for the non-existent ear infections.
We leave. I have no answers. I feel powerless.
We continue on through the rest of the week. His eyes glazed over in the chair. I can see him getting thinner. Weaker. Yet 4 doctors have seen him and don’t appear to be alarmed.
That weekend I find my son in his bed curled up holding his head crying. He wants to do nothing but sleep. He begs to be left alone. His body becomes more and more lifeless. He is clearly taking a turn for the worse.
I called the doctor’s office. They have another practice backing them up that weekend. Perfect – another doctor.
I take him immediately to that doctor. I recount everything. Everything we’ve been told and EVERYthing that has happened. She seems kind. She seems very concerned.
She examines him. She leaves the room.
She returns with an injection. She says, “I don’t know what it is but your son is extremely ill.”
Before I know it, she gives him a shot of Rocephin right into his rear end.
We return home. Within a few hours – I see more life coming to him. He seems to be doing better. There is the spark that has been missing.
The next morning he is chipper. I make the decision…
The oldest son is getting ready to turn 7 years old…his birthday party is coming up in a day or two. We need to shop.
I take Son #2 to my mother’s house so that I can take Son #1 out to Party City. She says she will bring him home later.
When I arrive home just a couple of hours later, there is a message on my answering machine from my mother.
“I have taken him to the doctor’s office again. He collapsed. You need to come right away.”
I race to the doctor’s office. Even though it feels like I will never get there – the ride is merely 10 minutes. I call my husband. I have the other 3 children with me.
When I arrive my son is in a room, lying down, lights out, he is not communicating with anyone.
“You need to drive him straight to the hospital immediately. I have called and they are expecting you. They will be doing a spinal tap. Are you okay or do we need to call an ambulance?”
I don’t remember much after that.
I know that my mother drove my other 3 kids home and stayed with them.
I know I drove my son to the hospital. I remember his eyes tightly closed and his limp body laying in the back.
I know we arrived at the hospital. They were waiting.
My husband met me there.
They took him immediately. We were led into a very small room.
My son covered his eyes from the light as he had been sensitive to it that afternoon.
My husband and I held him down while they put the needle into his spine.
Had to try again.
“Be very still, Baby.” I whispered.
This time we had success.
He was admitted. Given an IV. I was given a bed.
They pumped him with meds while we waited for the results.
The results came in. Meningitis.
He had Meningitis. To be specific, he had Meningitis for 2 weeks completely undiagnosed.
The results however were inconclusive as to whether it was viral or bacterial. It was explained to us that the antibiotics that had been injected in him prior to the testing would not allow an accurate diagnosis. In fact, even the antibiotics given for the "ear infections" had played a role.
My pediatrician blamed the young doctor that gave the shot of Rocephin for acting without knowing what was wrong. She told me she called her to reprimand her.
… Funny, I figured she probably saved his life.
It was interesting how everyone went into covering their butts mode.
They would treat it as bacterial meningitis.
It was determined that the “chest pain” he felt was actually a referred neck pain. But he told several doctors when he touched his chin to his chest that his chest hurt…why didn’t someone figure that out? Isn’t that a classic sign of meningitis?
He would be hospitalized for nearly a week on an IV receiving fluids and medications.
The rest of the family – Son #1 age 7, son #3 age 3, and daughter age 1 as well as my husband and myself would all need to be treated for bacterial meningitis – just in case.
Once the diagnosis hit the rumor mill of our neighborhood, panicked mothers who had children that had been in contact with my son within the past two months were calling their doctors in a frenzy. Their doctors were then contacting the hospital and my pediatrician – “Was there a case of bacterial meningitis to be reported?”
Rather than improving quickly as was expected, he seemed to be struggling to bounce back. With that, the doctor informed us that they would need to perform another spinal tap. They were concerned that the Meningitis has developed into Encephalitis.
Again, we all went into the small room. I whispered into my son’s ear while my husband held his legs. They inserted the needle. We would wait for results.
Another 48 hours passed. They brought my son cake and he finally ate it – there was improvement.
Eventually my son was released to come home. He would be released to be on an IV drip at home for a month. I was given his prescriptions and medications. A home health care nurse would visit the house each day to check on him. I would be instructed how to flush his lines and administer meds.
We filled the prescriptions and started the meds and awaited our first visit 24 hours later from the home healthcare professional.
She came in to see our son. She began to take his vitals. While taking his pulse and listening to his heart, she became visibly irritated.
She asked to use my phone. She called our doctor. I heard her mumbling in the other room. She returned to tell us that his heart rate was very abnormal and that she was required to report it.
She explained that the doctor said it was probably due to the fact that he had been incredibly ill. She looked in my eyes and said she was very worried and that we should keep an eye on him despite what our doctor had said.
So that night I stayed up with him. I watched him. He was very weak. Very drained. There truly wasn’t much to watch – other than him sleeping.
The next day the home health care nurse arrived. This time it was a different woman.
Same thing. She examines. She asks to use the phone to make a phone call.
At this point, I explain what had happened the day before. She told me that there was something seriously wrong with his heart rhythms and she was required to call our doctor.
She called our pediatrician to report her findings. She held the phone away from her ear and signaled me to come and stand alongside her.
She held the phone out for me to hear the doctor.
The nurse argued that something was wrong and that she did not feel comfortable leaving our home until she knew our son was going to be attended to by a physician. At this point, the doctor spoke these words,
“Don’t tell the mother. She is a bit dramatic and an alarmist. Just tell them to come into the office right away.”
I was completely floored. The nurse hung up the phone and began a rant about the doctor and what she had heard. She looked at me intently, held my hands and told me to get my son to the doctor immediately and that she was certain something was very wrong. She warned me that she could lose her job in doing this…
My husband and I scooped up our son and headed to the doctor’s office again. His body was so weak, he was unable to walk.
When we took him in the pediatrician listened. She left the room. She was gone a good bit of time and then returned. She then asked to speak with us outside of the room.
She informed us that she had called Johns Hopkins and that a pediatric cardiologist was waiting for us in the emergency department. She calmly asked us if we could drive there right away. She did not want to wait for an ambulance to arrive – she thought it would be best if we left right away and did not make any stops along the way.
We drove immediately to Johns Hopkins.
They were waiting.
Son #2’s history was taken.
He was hooked up to all sorts of monitors and gadgets for observation.
We were there for nearly 12 hours before the cardiologist had news.
He believed that the medication my son had been placed on for his Meningitis recovery was causing heart complications.
I then remembered the conversation that I had with the pediatrician that day in the hospital when she prescribed it.
“I am going to put him on an anti inflammatory medication for the inflamed meninges. He will continue to have headaches from the Meningitis and this will give him relief.”
Me – “Ok.”
The doctor then explained that there was not a children’s dosage to give but that she felt very comfortable adjusting the medication so that he would be fine. She believed that this drug was wonderful and would be exactly what he needed to help his recovery.
Me – “Ok.”
The pediatric cardiologist was less than pleased that this medication had been prescribed for my son. He was 5 years old. It had only been administered to adults and not approved for the use in children. He told us to stop the medication right away.
Meanwhile, my son would have to wear a halter monitor for about 3-5 days and they would follow him closely but he could return home.
Without the anti-inflammatory drug, his headaches progressed and got worse. But the home healthcare nurses checked him each day and his heart seemed to be doing fine.
We returned to Hopkins after several days and they felt confident that discontinuing the medication had been the right call and the meds had been the culprit.
After my son completed the IV treatment and was let go from home healthcare we had to begin another form of treatment. He would need to see a specialist for the recurring headaches that plagued him as a result of the Meningitis.
He was supposed to be beginning Kindergarten so I wrote a letter and requested that he have morning Kindergarten rather than afternoon as he was still so weak and tired. By afternoon he would need to sleep and see the doctor to be treated for his headaches.
I drove my son to see the “special” doctor who would hook him up to all sorts of wires and probes to test his headaches. He taught my son and me several therapeutic options in dealing with the headaches.
It was a long process.
The “specialist” informed us that we would have to wait 6 months to a year to see if there would be any residual or lasting effects from the Meningitis; if he would have any neurological or psychological damage…memory loss, speech problems, lack of coordination…
I think my son took ibuprofen for nearly 6 months after the illness. I know that he had headaches for months.
I left that pediatrician practice. We returned to our prior pediatrician. A change in my husband’s employment and insurance had forced our original change.
A year later, I would decide to homeschool my family. I watched my son very carefully for any damage that the Meningitis may have left behind. I don’t think there was a day that passed that I didn’t think about the entire fiasco and how sick my child had become. How lucky we had been...
Lucky that he recovered from the Meningitis.
Lucky that my other children had not developed it – including my one year old.
Lucky that his heart issues had resolved.
Lucky that up to that date, he didn’t appear to have any residual effects.
I know that to this day my son still talks about the days when he was sick. It definitely left its mark on our entire family.
Two years later, I was watching television when they reported that Vioxx had been taken off of the market. In the 4 years it had been used on adults, it had produced 27,000 heart attacks with 7,000 of them being fatal.
I later learned that DAYS before VIOXX was taken off of the market, it had been approved for the use in children after a 3 month trial on a group of children by the FDA.
Vioxx was the medication that my son had been given 2 years prior without FDA approval for children and had caused 27,000 heart attacks during it’s time in the community.
My son had seen 6 doctors multiple times during the span of two weeks. No one thought about Meningitis. In fact, some doctors just made up a completely false diagnosis. I was treated numerous times like a lunatic mother. An emotional basketcase, if you will.
My son has grown into a strong 15 year old now. Since that time, I am my children’s strongest advocate in the medical community. If it feels wrong to me – I push. I push hard. I don’t allow anyone to belittle me and I could really care less what they think of me.
I trust my instincts. As a mother, you have to – sometimes that is all you have…