Dear Mother of the Post-Concussed Teen

Last week I wrote a letter to the teen with Post-Concussion Syndrome, but this week I want to talk directly to the mothers who are afraid their teen is slipping through their fingers. That mother who begs and pleads for help. That mother who knows no one else who has PCS. That mother who didn’t even know it existed. This letter is for that mother, because I was once her.

Dear Friend,

I know how terrifying it was to hear of your child’s car accident, to see them land on their head on a football field, to be kicked in the head in the soccer goalie box, to fall from their bike… skateboard… tree… or cheerleading pyramid. It’s terrifying. But then they move, they get up, and they walk away from the accident, and you finally take a breath. I know that feeling of relief. Sure, your child will have a headache. That’s to be expected. But, it’s just a minor concussion. No big deal. Right?

Then, as time goes on, they don’t heal, they actually get worse. They stay in their rooms with the light off. They become short tempered. Loud or startling sounds make them snap. The smell of food makes them want to throw up. They begin falling while walking. Then they start staring off into space, and you can’t get their attention.

You don’t understand what’s happening, because no one told you a concussion could develop over time. So, you take your child to the doctor, get the MRIs, and they tell you it will last a month at the most.

Then it lasts longer… much longer… and it gets worse. Then the Doctor starts giving every reason in the book for the prolonged symptoms… Migraine? Allergies? Stress? Depression? Are they faking it?  You consider each one, even trying medications for these ailments, but in your heart you know none of it is right. FINALLY, after fighting for it, you get that referral to the local concussion center where you get a real diagnosis, Post-Concussion Syndrome.

Congratulations! Now you have something to fight. Now you can get some answers. Now you can understand what is happening. But wait… no… not really. Because they don’t fully understand Post-Concussion Syndrome. So, they load your child up with anti-epilepsy medications, psychotropics, and all other types of medications that will alter their brain chemistry. Meanwhile, you watch your child slowly slip away. I’ve been there, I understand, I get it… Let’s chat.

I want to assure you; your child will heal. It may take years, but they will heal. When you are in the thick of it it’s terrifying, but this isn’t the end. I promise, there is hope. Keep doing what you are already doing by advocating for your teen, taking them from doctor to doctor, pushing them through their physical therapy appointments, which they hate.  And, continue shielding them from crappy people. You are doing an exhausting job, but you are doing it well. Good job, keep it up!

Your child may not be the same person they were before their accident, and that’s okay. They were injured during a formative time, their teen years, so it makes sense. Personality changes happen in all teens, but compound that with one that sustained a serious injury that won’t heal, of course they are having a personality change. Add to that the fact that their brain was altered, even if in a small way, it happened. They may even be angry, and they’ll take it out on you. It’s okay, let them. You are their safety net; they feel safe with you. Let that sink in, they are acting out toward you because they feel safe with you. They may become depressed or develop anxiety, some even develop eating disorders as a way to exert control over their bodies, this is all part of the injury, take it seriously. When the pain is gone, that doesn’t mean they are completely healed. Keep going! This is where your love and patience bring the two of you through to the finish line.

Don’t be afraid of alternative medicine. Look, I’ll admit, I get annoyed when people push essential oils on me. NO, an essential oil will not cure my Lupus. NO, if I dance under the full moon while Jupiter is in retrograde, my insomnia will not be cured forever. No, I WILL NOT DRINK COW URINE… for any reason… ever… STOP SUGGESTING THAT! (yes, this is an actual suggestion I have received, several times.) BUT there are other ways to deal with the headaches, and they are things that a lot of concussion and sports medicine doctors don’t understand. Don’t thumb your nose at acupuncture, if you think there’s a small chance it will help, try it. If you think the keto diet will help because your child’s brain needs protein to heal, then you owe it to your teen to try. We went to a Neuro-chiropractor who attached electrodes to my son’s head three times a week for three months, and you know what?  It made things so much better. Was it a cure? No. But it made the pain bearable. My point is… if you have the means to do so, try it. Try whatever you can. Disclaimer: always talk to your child’s doctor first.

“It’s just a concussion, stop being so dramatic.”  I know you’ve heard these words.  I’ve heard them too. I understand the frustration. And, honestly? I think everyone with an invisible illness hears this. People are jerks. How do you explain what is going on with your child to people when they are behind in research, and don’t even believe Post-Concussion Syndrome is a real thing? I’ll give you a hint… You don’t. They won’t believe you. Maybe they, or their child, sustained a concussion and it took a week or two to heal, so your child should not be any different. Maybe the last time they saw your child was on a particularly good day, and they are basing their assumptions on that.  It doesn’t matter, they are not in the exam room with your child, they are not the ones dealing with it all day in and day out. Forget them, they are not worth your time. You have more important things to concentrate on. Anyone who takes the kick them while their down mentality is not worth your time or energy. WALK AWAY.

This is a long journey but let me give you some good news. My son, and his friends who have been diagnosed with PCS, are all okay. They may have more headaches than other young adults their age. They may have more things to deal with; vision and hearing problems, neck pain, or fatigue. But they are all in college, they are all doing well, and they all have a close-knit group of friends they have grown to trust. More importantly, they are all empathetic souls. They understand pain, and they understand what it’s like when the rug is pulled from under them. They give people grace, and aim to understand others because they know, first hand, that life is messy. Their resilience helped them to grow into understanding adults. I have faith your child will grow into a fully functioning, empathetic, caring adult.

I could go on and on about Post-Concussion Syndrome, because there’s so much I want you to know, from one mother to another. So, I will write more posts about this topic.

What would you like to know?

What is your experience with Post-Concussion Syndrome?

How is your teen doing with it?

How are YOU doing with it?

I want to know what you are going through.

Post comments below, I want to hear what you and your teen are going through.

I want to know you are okay.

With Love,

Abby