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 2/22/15. 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.

Glad to hear he gets to live like a 12 yr old again!

Bud

As I commented in the sticky,

It is great to hear your son found relief for his specific condition. Carrick Chiro does not help every one as many have discovered.

I hope you have taken him out of sports where he risks another impact to his head. At his age, his brain is very susceptible to injury that can have long term or permanent consequences.

You commented you have directed him away from the head risk sports. That is great.

Some things to be aware of are,

He may struggle when school gets intense. He may have some personality changes and changes in his relationships. If he expresses stress in social situations, try to understand and find a way to be there for him. At 12, his body and brain are going through some rapid changes that can be a struggle. Learning how to be supportive will be helpful.

My mother did not know how to help me. The doctors told us nothing. I had to live through the ups and downs all alone.

It may help for him to understand more so he can identify when he is experiencing PCS symptoms so he does not doubt himself.

Please feel free to ask anything about his struggles or things you may see him struggle with and no know if they are PCS struggles. Adolescence can be difficult. Even more with PCS and needing to change how he needs to live his life.

Hopefully, with the help he has received, he will not experience the struggles I had at his age.

My best to you both.

btw, What part of New Hampshire? I love New Hampshire. I have a family history in New Hampshire that goes back to the late 1600's.

Thank you Mark. I do worry about what the future holds for him. Driving, social situations, pressure. I was told by several doctors that this is the toughest age to get a concussion because his brain and body are so busy working on development, puberty, etc.

During his worst days his emotions were all over the place. It was very difficult to deal with and see him struggle. He took it out on me the most, but it did affect the whole family. I just learned to not antogonize the situation because it would just make it worse.

So far, the last 2 months I would say he seems back to himself emotionally. In certain situations he does worry before we go, but that doesn't stop him from going and I notice he pushes himself through the anxiety, which is really great. He's learning to face his fears and they work out in the end.

He is pretty social and active, so I think that has helped. I will definitely stay aware of his emotional state and keep my eye on him. He is a bit of a perfectionist and sometimes puts unnecessary stress on himself--and that was even before the concussion! I was actually told that this type of personality seems to struggle the most with concussions.

We live in Derry. We have lived here for about 11 years now (originally from MA). We love it here too

NeverGiveUp,

It may be worthwhile to talk with his school's nurse or counselor to make sure they are up to speed about his past and possibly current struggles. Stress may cause him to struggle during tests. I would get horrible brain freeze during tests.

What kinds of situations cause him to worry before going ?

If he gets stuck trying to express himself, he may do better if he rehearses what he wants to say in his mind. It helps me a lot. Otherwise, my thoughts can get jumbled and poorly stated.

You may notice that he struggles in situations where there is a lot of sound or voices. He may do better to sit in the front of the class so he is less distracted by room sounds compared to the teacher's voice.

I know the Derry area. I had an aunt who lived in Londonderry. Another in Kingston. My cousin lives in Fremont. We lived in Nashua in the mid 60's. My father worked in Boston. I'd love to live in that area except my family now lives on the west coast. I haven't been back there since '92. I loved being able to go to the woods when I was young. My father was born at the foot of Mt Washington. That whole area is so rich in history.

I work in Boston too. And love the west coast! Thank you for all of the advice. This was a whole new world to me. His school was very supportive, thankfully. They have "504" plans that are basically a list of accomodations for students with temporary disabilities. My son did have one in place that we are lifting. They included things such as allowing him to go to nurse's office to lay down or get some advil, extra time on tests, prewritten notes, etc. Someone paved the way for us there.

His stresses lately only seem to be when he thinks of soccer. It was such a big part of his life. So, he gets a little worked up about seeing his coach or teammates. I think he misses them all terribly and feels as though maybe they are going to pressure him, but they have been great lately about not doing that. He is letting his guard down there, so that worry is fading.

He seems to have gotten over the noisy/busy situations bothering him. Those were some of the things that bothered him a lot especially over the summer. I keep looking for signs of them still being there, but I haven't seen him looking stressed in those situations. He has even gone to school dances and they have not bothered him. cHe really doesn't seem to have any symptoms right now and keeps telling me he is all better lol... so I am being cautiously optimistic!

Again, I really attrribute all of his recovery to the treatment he received from Dr. Carlson. So very thankful to have found her and her office. I videotaped a lot of his therapy, so maybe I will get him to let me share those sometime.

I played soccer for 7-10th grade. Suffered a severe relapse and academic failure after 10th grade season. Dropped a full grade point. I stayed with soccer as the team manager and took up cross country and track (distances). I kept the score sheet, shot on goal, play time, etc. all the stats.

Our team was the best in Connecticut but lost the first game of state tourney because most of the team was hung over from a bachelor party the night before. I loved being a part even as the manager. I would run with them to stay in shape. Soccer is a great conditioning sport for running distances.

Your son could even be the concussion advocate for the team. He could learn the concussion protocols and direct players to getting checked. ("Coach, Player X looks like he needs to be checked.") Does his school use ImPACT or HeadMinder or such ?

Many states are outlawing heading until 14 years old. I would like to see the limit set at 18 with no headers in the goal area. No heading corner kicks. That is where head to head contact is most dangerous. Research shows a 9 point IQ differential between soccer players than those who do not head a soccer ball.

You might want to keep some of the 504 in place for the near term, specifically test taking. I would not be surprised that he will roller coaster in and out of some PCS struggles.

Good you have Highway 93 to Boston. That is a beautiful drive for most of the way.

My best to you both.

Wow--you and my son have very similar stories!

U12 can head in games, but not in practices here. My son thinks this is going to be a problem for younger kids where no heading is allowed at all. He believes the new no heading rules will cause more high kicks to the head.

What happened in 10th grade that caused your setback?

He has never had impact testing of any sort prior to his injury, and he played d1 for some pretty big clubs in the area (has been with the same team since he was 7, but they've played for several clubs).

Thank you for all of the suggestions. These are very helpful!

10th grade was just heading the ball. We could not identify a specific event. Just know I headed some high flying balls that stunned me. Should have chest trapped them.

It is easy to outlaw high kicks. "No kicks above the mid chest if an opponent is within 10 feet. No bicycle kicks." Soccer players are not learning to trap the ball.

My granddaughter plays as a striker for her age group and a second team that is the next older age group and leads in scoring in both. Her soccer scares the .....out of me. Calif and US Soccer restricts heading but she is aging up into the heading allowed age. Heading should not be allowed until after 14.

They told my son he should never head a ball again.

It is very difficult for me to watch any kids play. You look at it differently after going through something like this. And forget about watching football. I watched one Patriots game and a player on the other team got a concussion. It bothered me for days after... and my reaction during the game cause my family to ask me to leave the room lol..

The research on CTE is now saying it is the multiple little hits that really cause damage. I can't 'help but think back to all of the times I cringed when he headed the ball.