When parents disagree over PCS care
 

The doctor is starting to doubt my son's symptoms. Asked if I thought he could be faking it!

The dads keep flip-flopping. His real dad now is so concerned that he wants me to take him to different doctors until there's an answer. My husband (of 5 years) wants to send him back to school "to see how he's really doing".

During each day, I waver on trying to just accept and deal with what is (which is so ambiguous) and trying to find someone who can DO something.

They want to do an echocardiogram Tuesday and blood work to see if he has a virus causing his high heart rate. Doctor poo-pooed my thoughts on spinal cord issues. His newest symptoms (high resting heart rate with low blood pressure, numbness in extremities, new and dif headaches, and more) started within 48 hrs of the last chiro visit where they stretched his head so far forward that i thought it'd snap off.

Not very many doctors in this area familiar with PCS. Our two docs are the two most known here. The one we saw yesterday has another 16 y/o pt who he's sending to a psychiatrist now.

I would really suggest seeing a neuropsychiatrist if at all possible. I'm lucky to live in a large metropolitan area with two world renowned hospitals. One is psychiatric and deals with Traumatic Brain Injury recovery all the time. There is also a local hospital that has a Neuro center that deals with concussions. I have been referred there and diagnosed with PCS. They treat symptoms, which is really anyone can do. The only real "cure" is time for the brain to heal. The healing is usually a slow process and lack of patience / frustration are common to this condition. Education for the two dads would certainly help.

www.tbiguide.com is a great place to start.

You should start a daily journal with your son. Document medications and activities for each day and symptoms and severity of each on a 1 to 10 scale. Use this with the medical team to try and generate the most appropriate care.

Good luck to you and your son.

I am sorry to hear that you're having so much trouble.

I live in Los Angeles. My Neurologist teaches neurology to medical students at USC. I have been suffering with cognitive impairments and symptoms for about 20 months since the accident I was in and the last time I saw her, she seemed very convinced that I will still improve.

I believe that if anyone in my life had not believed the things I was going through when I was really bad and tried to force me into doing things (that I really wanted to be able to do) it would have made me worse. I'm the "go-getting, over-achieving" type-A personality kind of person and I've overdone it and set myself back a few times during this course and I'm still not even able to do half of what I could before the accident.

Granted, I am not a teenager and they say that young people recover the best from these sorts of things because their brains are still developing and create new pathways pretty quickly. But there is no way to know what kind of damage is trying to heal itself in your son's brain. And I have found other teens and parents of teens online who have suffered from PCS for well over a year to two years.

Personally, I think your son's father is right. If you can afford it, try to take your son to a concussion specialist. Or try to contact one online or over the phone to discuss options. Or try to get in touch with a neuropsychologist who is very familiar with mild traumatic brain injury.

I wish you and your son luck!

worried_mom,

I would start with trying to find a better chiropractor. Extreme efforts to adjust the neck are too risky in my opinion. NUCCA chiros do very gentle and fine adjustments. They do not try to achieve large changes in one treatment.

With the excessive treatments, the trauma can cause inflammation that is worse than the prior misalignment. I have been treated by both kinds. With the more aggressive chiros, there was a need to do icing after the adjustment with a few follow-up adjustments to help the joints settle down before any relief was achieved. The standard chiro diagnostics do not work well for upper neck problems.

What are his specific symptoms now? Do the dads understand his symptoms?
There is no magic pill or treatment. Finding the one doctor who can fix him is not likely.

As others have said, there is not much that can be done, even by the concussion specialists. Understanding the symptoms and how to respond to or tolerate them is just about all that can be done. It is a slow path if the recovery is not spontaneous. The goal is to not make symptoms worse so the brain can start the recovery process.

Too much doctor shopping can be worse as he gets anxious from all of the anxiety around him.

The journaling of daily symptoms can cause anxiety. Better to journal weekly to notice trends. It is not possible to micro-manage PCS. The roller coaster of symptoms will have you in fits. Take a longer term approach.

I hope he can find some respite from all of the anxiety that appears to be arounds him. He needs the peaceful atmosphere.

My best to you all.