I haven’t been writing much lately because my son has been very ill after suffering a concussion nearly eight weeks ago. I do sit down and try to write, but only crud seems to come out because I just can’t focus or think about much else right now. Since we’ve been dealing with my son’s injury for the past eight weeks, I’ve come to realize some things.
I’ve had it with doctors. HAD IT.
My son fell. I took him to our pediatrician. She gave him a neurology test, told me he had a concussion, and sent us to the hospital for a CT scan. Perhaps I’m stupid. Maybe I am a bad mother, but I didn’t know much at all about concussions or how to treat them. I certainly didn’t realize that my child could possibly be in pain, miserable, depressed, and anxious for weeks, maybe even months.
The CT scan was negative, and our pediatrician called to tell me to keep my son home from school for a few days, and then send him back, if he was up to it. We were supposed to keep him out of physical education class and recess “until he felt better”, and no sports for two weeks. I thought we’d be able to handle that; not a problem.
I did exactly what our pediatrician told me to do. He fell on a Wednesday and I kept him home from school on that day, Thursday, and Friday. Monday he went back to school. He came home completely exhausted, in pain, and miserable. He went back on Tuesday and stayed for only a half day. On Wednesday, I kept him home. He seemed to be getting worse instead of getting better.
On Thursday, he was home again, and he woke up from a nap with a very large, swollen eye. Alarmed and nervous, I called our pediatrician (who was not in the office that day), and made an appointment with her partner. She, too, was worried about the swollen eye. She had no clue what it meant or why it had happened. She told me that he needed to see a neurologist “today”, and instructed me to “not let him eat anything in case they want to do a procedure or something.”
A procedure? What kind of procedure would she be talking about here? Are we talking brain surgery? Does she think he has a tumor?
I left the office numb and confused. The pediatrician’s office was to call the neurologist and set up our appointment, and then call me with the details. My son and I went home to wait.
No one called.
I called the pediatrician’s office. Of course I had to leave a message.
Much later, the pediatrician’s office called to let me know the neurologist’s office staff would call me very soon to schedule our appointment.
No one called.
I called our pediatrician again.
This time an office staff member from our pediatrician’s office told me that the neurologist group (there are well over ten doctors in this practice), had no openings for an appointment for my son.
“But the doctor said my son needed to see a neurologist today. She even told me not to give him anything to eat in case they needed to do a ‘procedure’.” By now it was past three in the afternoon, and my child was starving. I let him eat.
“Yes, well, the doctor says it’s OK. The neurologist told her that all the symptoms your child is experiencing are normal symptoms of a concussion, so he can wait for a few days for an appointment.” The office staff member explained.
“Um, well, OK. So, they aren’t scared there’s something really wrong with him, then?” I asked.
“No, the neurologist said everything is normal.”
I felt somewhat better, but still uneasy as I hung up the telephone.
We finally got an appointment with the neurologist, about a week and a half later. My son was having a good day that day. He passed the neurology test she gave him, and she said he could return to school and activities, as long as he felt like it. She said she had “no idea” why my son would have had eye swelling; that it wasn’t a “normal” symptom of a concussion, so it must have been something else.
I was relieved and thought we were at the end of this journey. I wrote off the eye swelling as just a weird allergic reaction to something that day. I figured my little boy would be better very soon. The neurologist had given us access via the Internet to a “Patient Portal”, which would be an online account we could create and retrieve all my son’s medical records and information. That would be nice and easy! I was feeling so much better and much less worried about my baby.
My son continued to experience severe headaches on a daily basis. School made them much worse. Any time he’d have to do anything that required him to think or use his brain, he couldn’t handle it. He said the pain felt like someone was stabbing him in the head with a knife. Other times, the pain was a constant pressing down on his head, as if it were in a vice. He told me the headaches never went away; that they were always there.
I called the neurologist again and made another appointment. This time I asked my husband to go with me, because I didn’t want to forget to ask certain questions, didn’t want to be confused, and just needed some moral support for my son and me.
We explained to the neurologist that our son wasn’t doing well; he was still in a lot of pain, still having some eye swelling from time to time, and still feeling very depressed and anxious. She examined him again. She said he had neck spasms and injury, probably from the original fall, so she gave us a prescription for physical therapy. She realized that Motrin was not helping my son’s pain, so she prescribed a different medication. She also suggested we get an MRI for him, which could be done right there in her office. However, they had no openings for two weeks.
We scheduled the MRI, filled his prescription for medication, and began physical therapy. The medications haven’t helped. He’s still in pain much of the time. The physical therapist did say that his neck is “pretty bad, very tight”, so she gave him several exercises he can do at home to help. We also bought him a special pillow for sleeping, an ice pack for his neck, and some other crap that’s supposed to make him feel better.
The date for the MRI finally arrived, so I took my son to the office and waited while they took him away to a big room with a loud machine that would look at his brain and hopefully tell us something. We were sent home after the MRI. My son cried all the way home because the MRI was so loud. It hurt his head to be in there for the test.
I called the office toward the end of the day to see if I could get the results of my son’s MRI. They were not available. I tried logging onto the Patient Portal they had told me about at our first appointment, but received this message, “the system does not recognize this patient information.” I tried logging in multiple times, but still received the same message.
The next day, I called the neurologist’s office again. I told them the Patient Portal wasn’t working properly, and that I would like to get my son’s MRI results, as my son was still doing pretty badly. The MRI results were back, and they were sitting in the doctor’s folder (I was told by the receptionist), but she was out of town for the rest of the week. I would need to call back next week to get the results. Also, I was told that they were aware of the problem with the Patient Portal and they were “working on it.”
Most excellent of answers.
I asked if there was another doctor in the office who could possibly review his chart and maybe change his medication because he was still having very painful headaches and it just didn’t seem like the medication was helping much at all. The receptionist said I would have to wait until my son’s doctor returned to the office the following week, but that if I wanted to, I could take my son to Urgent Care or to my pediatrician’s office.
“You mean the pediatrician who sent me to YOU because she didn’t know what to do about this?”
There was no answer.
I hung up.
I do realize there are people who are much sicker than my child. I also know that these doctors are very busy, and they see hundreds of patients every week. I know that my kid only has a concussion and that he will recover at some point. But I wish these doctors could see those nights when I’m holding him in my arms while he cries because his head hurts so badly he couldn’t eat dinner, can’t sleep, and can’t even open his eyes. I wish they could see it when he has a panic attack because he’s so afraid to try to go to school because every time he does his headaches become unbearable. Maybe if these doctors saw my child in these situations, they’d call me back right away rather than a week after I call and leave a message, or maybe they wouldn’t instruct their staff to take my kid to Urgent Care when he’s had a concussion for seven weeks. They must understand that an urgent care facility won’t know his history, won’t have his test results, and won’t be able to give him the medication he needs to make the pain stop.
I’d like for a physician to LISTEN to me and listen to my son. He’s very good at communicating and does a great job telling the doctors what symptoms he’s having. It doesn’t help when they look at him like he’s a freak when he tells them his face is numb. Why would he make that up? Weird things are happening ever since he fell and got a concussion, and no one will explain any of this to me. The Internet has been my only resource for information.
Thank God for counselors, because he’s the only person who has helped us understand why my son is feeling the way he does. He explained to us that my boy suffered a trauma, and his brain is trying to “reset” itself. He said that it’s not uncommon for a child to feel this way after an accident like my son’s; that my son is understandably scared to go back to do the things he used to do before he suffered the concussion.
My son has lost his confidence, and it’s heartbreaking to watch. He is behind in school, he can’t think for large amounts of time, he feels like he’s letting everyone down, and he thinks all of this is entirely his fault.
I know there are good doctors out there; I just haven’t found the right one for my son.
Tomorrow I will try a new route and make a call to a different neurology team; a group of doctors who specialize in sports concussions. I’m hoping for the best, and praying that my little guy gets some relief and starts feeling better about himself and his world.
There’s no worse feeling in the world than watching your child in pain and realizing there is absolutely nothing you can do to help him. I hold him, I hug him, I kiss him, and I tell him that everything is going to be OK. He is starting to doubt me. I have never lied to him, and I don’t want him to think I’m starting now.