I have been reading this blog ever since my 12 yr old son was diagnosed with PCS a few weeks after he got a concussion playing futsal 2/22/16. Head to ball, then head to head, then head to floor contact (he got headed on the back of his head). His first concussion ever.

I have a hard time talking about the last 11 months. I feel like retelling it is reliving it and it was just the worst thing we have ever been through. The reason that I am finally posting is because I want to share with you what finally helped him…

We live in NH and went through our local hospital originally. First we were told a week, then a month , then he started PT. He wasn’t getting better. He couldn’t walk down our driveway without turning red and getting a massive headache. If he closed his eyes, he would shake like he was having a seizure. He told me that he didn’t know where he was when he closed his eyes. His hands would get numb and he couldn’t make a fist when he was hungry. He could not track with his eyes. His head looked crooked. He would get car sick. He felt isolated from his friends and teammates and was very emotional.

A few months went by without any improvement (and with a few more head hits and trips to the ER from lack of balance). He got incompletes at the end of 6th grade because he could not do school work. He got migraines at school (2-3x a day only half days) and had a chronic headache 24x7 that he described as a level 4.

We tried a NUCCA doctor a friend referred us to. That helped his exercise ability tremendously and even reduced his chronic headache—he was able to swim this summer and was able to walk a mile because of this doctor. But he still had horrible balance and vision issues. He continued going to pt 2x a week making barely any progress.

4 months in, we went to a hospital in Boston for a second opinion. The doctor thought he may have had a hole in his ear canal, but a day at the brain injury clinic and then further hearing and balance testing revealed that was not true and the problem was a brain stem injury—he had problems processing the information from his body, eyes and ears. They told me he was the worst case they’ve seen in a long time, but not the worst case they have ever seen. That was devastating to hear because I didn’t really know that he was that bad—I had nothing to compare him to. Anyway, they told me that his current pt was insufficient and that we should switch to their pt program. But after a few weeks of doing home exercises they gave us, he was not really responding to it. Because of his reaction to a test at the brain injury clinic (it was a test where the doctor whipped his head side to side—brought him to tears and made his eyes glaze over), they sent him to their psychologist, who told him his concussion was healed. Umm, what about his shaking when he closes his eyes? “That must be from a different cause.” After all of that, that was the conclusion? His concussion was not healed--he still had almost all of the symptoms! I just didn’t understand and felt alone and hopeless at that point. I didn’t understand why they would give a kid who said the words jumped all over the page a 100 question written questionairre, then a verbal memory test on top of that. He told me that my son bombed the verbal test and suggested that some kids fail the test on purpose to not have to go to school. But my son was dying to go back to school. It didn’t make any sense. I wondered if the sequence of the testing could have anything to do with it. I am sure his brain was fried after filling in those little circles on the questionnaire. I had to actually help him fill them in toward the end because he got a headache. And the verbal test was after that. Why would they do that? A follow up with the initial doctor he saw there resulted in a suggestion that we not focus on structured eye therapy, and instead just continue with as much physical exercise as he can tolerate. Let play be his therapy. You know, pretty much what we had already been doing for the last 6 months. After all that testing, we were back where we started.

I knew from lots of reading that the right therapy early on can prevent long term problems. I wasn’t giving up. I already knew about functional neurology because of another mom in NH I read in a magazine whose daughter suffered for 2 years before finding a functional neurologist in RI. I talked to her many times and she was so helpful and we still talk. But moving to RI for a few months for therapy was not an easy option for us (I also have a 9 year old daughter). After lots of research, I decided I was going to contact Carrick. I read on this blog that some people have success with the program and some do not. However, I felt I had to give it a shot. I could not afford it, but I was going to find a way. I finally got up the guts and left them a voicemail… and never heard back from them.

In the meantime, I did more digging and found a local functional neurologist in Acton, MA (Dr. Carlson at ChiroPro). I came across a blog by another mom in MA—her son had a 70% success at Carrick and followed up with ChiroPro for the rest of his treatment. Our experiences with doctors in this area were very similar. She was kind enough to call me on the phone after I e-mailed her. She had nothing but wonderful things to say about ChiroPro. After I talked to her, I called them (Mary, who answers the phone answered all of my questions and did it with incredible patience and compassion!)

Dr. Carlson tested my son. A few days later, I went in to hear her findings. I was so scared and sick to my stomach. I felt like this was really our last hope and I was afraid she was going to tell me she couldn’t help him. She explained to me where in his brain his injury was (brain stem), what this area of the brain was responsible for and why it affected him the way it did. She told me that the problem with his current pt was that they were trying to get him to walk before he could crawl. She said she would like to have 2 weeks with him to see if he responds to treatment and if not, she would refer us out. We stopped all of his other therapies. We have never looked back.

Her treatment was nothing like the other places we had gone. It was one stop for everything. She is amazing. Her staff is amazing. She put the whole picture together and she knew what to do to treat each and every symptom. She showed me problems that he had that I didn’t even realize (like his shaking that she told me is called myoclonus--and he couldn’t lift his knee up without falling forward). She was confident, treated him like a person and truly cared about him. In just the first week, he was able to track with his eyes again. The next week he could hold his gaze fixed on an object while moving And it just got better and better from there. Dr. Carlson, Dr. Crifasi, Mary, Carol Anne and Tina all are wonderful. They are a great team. They saved my son. And saved my sanity. My son ended the first trimester of 7th grade on honor roll.

But, even better, on January 10th, he came running in to find me yelling “mom!”. He was holding his head and was in tears. I thought he hit his head again, but I tried to stay calm (a skill I’ve only picked up the last few months). He said “My headache is gone! It is just gone! I didn’t notice even notice until right now! ” Huh, it’s just.. gone? That’s it? It’s really gone?! He remembered having it the day before. That was his last remaining symptom (we were starting to believe he would have that headache for the rest of his life). There was a worry buried inside me that it would come back, but it has been almost 2 weeks now, so now I feel it is safe to write this.

On January 11th, 2016, Dr. Carlson wrote a note clearing my son for activity. Of course, now I am faced with a 12-year old boy who thinks he can do anything. But I’m not complaining about that. We’re just going to take it day by day.

I am still in disbelief that all of this happened.. like a bad dream. If you are suffering, even after years, call ChiroPro in Acton, MA . I am sure glad we did! Feeling grateful.