10 year old with post concussive syndrome
 

We are on day #33 of post concussive syndrome. I've read a lot of scary stories on here and I'm praying for you all and that we will not be at this as long as some of you have. My son hit the back of his head on the boards during a hockey game. We are being treated by a neurologist at Children's Hospital in Boston. Does anyone with PCS experience have an opinion on Amitriptyline to prevent headaches? We are not confident that this drug is the "answer."

While we are waiting for the Amit. to "kick in" and then the several weeks it will take to "tinker" with the dosage, my son is experiencing severe headaches (8+ for most hours of the day). We have been cautioned about Rebound Headaches and have been told to stop all pain meds (motrin and tylenol). Well after 3 days of this we couldn't stand it any more and after consulting a specialist over the phone decided to give him some motrin tonight. He fell asleep in 25 minutes as opposed to 3 hours of crying, moaning and wincing in bed. He's seeing a chiropractor (laser therapy, massage) and a cranial psychotherapist (zero balancing, pressure points) to help curb the pain, but it's hard to tell if they're helping much yet.

I'm hoping things will improve in the next few days, as far as his care anyway. I've pushed our way into the Headache program at Childrens, which is a part of their pain clinic -- but may have to wait a couple of weeks before we are seen there. We have also made enough noise so that our follow up with the Neuro-clinic (after our initial ER visit three weeks ago) has been moved up to Friday from the end of Feb. I'd appreciate any insight anyone might have to help us find the best treatment for our son. Thanks!

[QUOTE=sbosco;195019]We are on day #33 of post concussive syndrome. I've read a lot of scary stories on here and I'm praying for you all and that we will not be at this as long as some of you have. My son hit the back of his head on the boards during a hockey game. We are being treated by a neurologist at Children's Hospital in Boston. Does anyone with PCS experience have an opinion on Amitriptyline to prevent headaches? We are not confident that this drug is the "answer."

Hi sbosco,

I was reading through the forum looking for info on another topic and saw your posting. I had to reply, because my daughter (who is now a happy healthy 19 yr old) was in a car accident when she was 9. She was knocked unconscious for about 20 min and had a concussion. We had issues very similar to what you are reporting for a long time after the accident. She had severe headaches for over two years. She was put on Amitriptyline for about 6 months or so (hard to remember exactly how long after this time!). It helped, but it did not completely get rid of the headaches. Looking back, I would say that her brain needed the time to heal and there was probably no drug we could have put into her that would have completely removed the pain.

It was very hard for us to see her hurting and I bet it is for you as well. We also noticed cognitive effects after the injury. As an example, she was (and still is) a very bright kid, but for the year after the accident would frequently (and seemingly randomly) not be able to do pretty easy math problems. Her teacher, who knew her well from before, commented on this. She did seem to recover from this after about a year or so.

The good news is that she did recover--the headaches got less frequent over time and are gone. It took much longer than anyone explained to us, though. And it was a fight sometimes to advocate for her to the doctors and school.

One thing about the Amitryptyline to watch for is that it can cause tremendous weight gain. I saw this in our daughter and also in a friend that took it. She lost the weight over time, but it made her very uncomfortable.

I hope this helps some, and that you're seeing progress with your son!

hi there sorry to hear about your son ,my husband had ammitriptyline for the headaches and lack of sleep with his pcs and it didnt particularly help he certainly didnt sleep and they fiddled about with his dosage and then gave him another antidepressant to take with it but that didnt work either so i do sympathise with you.My husband has had pcs for over a year now ,but dont be disheartened keep pushing until you get the help thats what i did and my husband goes to rehab once a week now ,hope things improve for you ali

How is your Son?
 

Hi,

How is your son doing today - it has been almost a year since this post?

I'm still desperately looking for help for my daughter who is 15. It is 2 yrs in January since her injury. Her symptoms remain much the same - headaches, dizziness, blurred vision, nausea, fatigue - all from being exposed to noisy situations, light changes, physical activity, reading or concentrating for too long. She also has had 9 non-epileptic seizures in 23 months.

What have you found that has helped?

I have recently been looking at Dr. Walker's Neurotherapy Center in Dallas as an option. They do qEEG guided neuro-feedback. Any experience or knowledge of this good or bad?

Linda (mom) in CT

Dear Linda,
I am so sorry to read about your daughter. I am also in CT and have a teenage daughter with post-concussive syndrome. It was also 2 years for her in January. It has been a long road but she does continue to make progress.....progress feels very slow and can be hard to notice but it is there and that is encouraging. My daughter has not had seizures, I can imagine how terrifying that has been on top of everything else. My heart goes out to you and others on this board coping with post-concussive syndrome. Please email me and let me know how your daughter is doing.

Dr. Walker, qEEG & other ideas
 

Hi from Dallas!

So so sorry for your family's suffering. My son (head injury w surgery & coma at age 9; persisting "challenges") and I have both been patients of Dr. Walker's (it's been around 4 years ago since we've seen him). Dr. Walker is very kind, compassionate & attentive, and offers many modalities that may be of use. Dr. Walker also is incredibly committed and stays on the leading edge of advances, being very active in the research end of the equation as well as treatment; truly a man with a deeply felt mission to help. QEEG is very helpful in understanding just where the brain is having its greatest challenges, and generally getting a better grasp of what is going on. AND doing these treatments through Dr. Walker is MUCH more likely to get insurance coverage than any other place I've found (even my Medicare covered it... elsewhere just the initial QEEG & interpretation is pretty expensive & uncovered, before you ever get to any treatments.)

All of that being said, neither my son nor I achieved miraculous results w neurofeedback. However, we did meet fellow patients there who did. The brain is still so little understood that what works for one may not work for the next. Just wouldn't want you to set your heart on a magic wand in Dallas.

HOWEVER, in the course of researching re my son's second head injury (he's now in college in Colorado; can't believe we're at this again... this time milder, but seems cumulative - post-concussion syndrome - many functional difficulties), have learned that EEG neurofeedback has made dramatic advances since 4 years ago - so Dr. Walker's current treatments likely have a higher efficacy than those my son & I did with him.

ALSO you might want to look into hemoencephalography - a newer subcategory of neurofeedback that targets oxygen to the specific parts of the brain where it's needed. (Don't rely on me... just google it, and I'm sure you'll get lots of info.) I don't know whether Dr. Walker uses this, but it's one modality I'm currently looking into in Colorado. My son has also started hyperbaric treatments there, since his injury is very recent; don't know whether your daughter's injury is recent enough for this to be a meaningful option.

Last note: I just learned what a MD specialty in Rehabilitation and Physical Medicine, and so very glad I did. (aka Physiatrist) (again, definition/ description readily available online.) If you're like me, you may not know what "magic word" to ask for, but if you're not yet working with a doc in this specialty, you may want to check it out.

Sending you prayers and all the best wishes,
Mom in Dallas

P.S. I have found tremendous relief in "detox." (At a minimum, lots of clean water, green leafy vegetables, & plain chicken & fish, low carb, w no sugar & no sugar substitutes other than liquid stevia.) Your daughter's symptoms might also find relief there. Google "mercury + health", "mercury + candida", acetaldehyde, BPA, "heavy metals toxicity", "headache + toxins." Many things we either ingest or are otherwise exposed to, or which are the product of imbalanced gut microbes, are neurotoxins. (One example is aspartame, which is incredibly widespread - diet colas, "Crystal Light" & so many more.) Anyway, very difficult to find a Western medicine doctor w any awareness of the connection between neurological symptoms & toxins, but Dr. Walker is one of the rare few who gets this and can help. There's SO much to know on this topic - and I understand that it's not where everyone's "inclined to go", but just wanted to make sure you know that this is a possibility you might want to consider.
__________________________

It seems these posts live on and on. I'm happy to report that my 10-year-old, who is now 13 is healthy and strong at this point. In retrospect, the treatment that finally helped the most was complete brain rest for 20+ hours/day. No TV, no reading, definitely no video games, no outings, nothing that would generated elevated brain activity. Baking was a saving grace and he did lots of it. Yes it was torture, and even to this day I don't really know if that was the turning point or if he brain was simply ready to heal. I do know that after about 10 days we started to see some improvement (fading of the seriousness of the headaches) and creeped slowly back into normal life. As of now, all is good. We have not seen any residual effects. He still is active in sports, baseball, basketball and skiing. He got drilled at the plate last year and I thought I was going to throw up right on the spot. He said he was fine, but thankfully my husband was coaching and had him sit for a couple of innings anyway until we were sure. Concussion #2 will always be a fear for me, but I know we are in the lucky group. Those living with PCS are in my nightly prayers.

Concussion in teen daughter
 

I just found this forum tonight and am hoping that I can find some advice. My teen daughter is now 11 days post-concussion, although for the first few days after her fall she kept up with sports and school as we did not realize her symptoms were a concussion (we feel terrible about that). So we may have made things worse by not slowing her down right away.

She was diagnosed by a local general practice doc and put on vicodin because tylenol was not working for her severe headaches. This doc does not think she needs to see a specialist or have a brain scan. He thinks she should just rest and take the meds and everything will improve.

The headaches are not improving at all. They return when the vicodin wears off after 5 hours or so. She cannot concentrate on schoolwork. She has been doing full rest now. Missed a week of school so far.

I am concerned about this drug being so strong for a young person... I am concerned that we are not getting good medical advice... and I am just realizing that this will be a long journey for her, so I am grieving too.

What kind of doctor should we try to see? What is the general advice in these situations?

Many thanks.

I am so sorry to read about your daughters head injury. My daughter was 11 when she was injured. She still suffers with post-concussive symptoms and she is now 13. The headaches remain terrible at times but are less frequent.

My daughter fell during a ski lesson and got her concussion. The ski instructor told her she was fine and to get up. She was very dizzy and fell and hit her head a second time within minutes. A second hit to the head before recovering from her first concussion made this so much worse for her and has prolonged her symptoms. (I mention this so you don't worry that your daughter will still have these headaches and symptoms years from now. Most kids resolve within months.)

I do think that the care and advice that you are receiving right now is very important and can make all the difference. I would suggest a pediatric concussion specialist.

The most important thing we have learned is to stop whatever she is doing and rest immediately when a headache starts to come. Rest or sleep until the headache passes. Make a note of what she was doing and what the environment was when the headache started so you start to spot triggers that cause headaches.

I too would be worried about the vicodin and would want a second opinion on that asap. My daughter was only able to take Advil and Tylenol because of her age and weight at 11. Advil always worked much better than Tylenol. I always wished that they would prescribe a stronger pain med to give her some relief from the headaches, but they would not. Perhaps our doctors are just more conservative in that regard and it is fine. I would suggest getting a second opinion to be sure.

The only thing that really took her pain away was sleep. She slept a ton in a very dark and quite room. For her it was important that we kept the house very quite when a headache was present.

It is awful to watch your child suffer with a headache and not be able to make the pain go away or at least tell them when they will be all better. It is such a frightening and helpless feeling and my heart goes out to you.

Right now your daughter's brain needs to rest and recover. Don't worry right now about missing too much school or make-up work at this time. It is still very early. There will be time to make-up and catch-up once her headaches are under control.

If there is a way to privately exchange phone numbers on here, I would be happy to talk to you if that would help.

I am glad that you found this board so early. Many supportive people here and tons of information.

Dear snowydaykids,
I feel your pain. Please know that you are right to be concerned and to question the doctors treating you daughter. Tralee has some good advice, and mine is more of the same. I am fortunate that my son is fully recovered. His main symptom was headaches as well, and we relied heavily on Advil. At one point, one resident doctor from Children's hospital in Boston had us concerned about "rebound headaches" from medicating over too long of a period, so we dialed back the drugs quite a bit. All it did was make him suffer more and once we got connected with doctors who specialized with concussions, they dismissed that theory entirely. I would recommend finding a doctor who has lots of experience with concussions.

We saw Dr. Neal McGrath (parent of concussed son), a neurophsycologist in Boston who conducted the ImPact test on our son. In an ideal situation, a baseline reading is taken prior to injury and serves as a barometer for the healing process. The test was still very useful, and I'm happy we have it in place in case (God-forbid) we get to #2. Google Dr. McGrath and you'll find his website.

Also, the advice above about not worring about school right now is so true. It was very difficult to put our whole families' lives on hold. We cancelled a Disney vacation, avoided hosting any gatherings and declined many invitations during that time. The hardest part was not know how long we would have to live like that. I'm happy to talk with you personally. I feel for you as I know how helpless and desperate I was. Feel free to e-mail me for my phone number: s.bosco@comcast.net. Good luck!

10 year-old son w/PCS
 

Hi-
I found this forum searching online. I can relate! My son has been diagnosed? w/PCS. It has been 5 weeks since a big hit in football. Fell sideways from counterstool next night-loss of balance??No other symptoms at all so he continued to practice for 2 weeks and then symptoms of bad headaches, major fatigue. A visit to the pediatrician, maybe PCS but why no symptoms for 2 weeks after that hit? Maybe another little hit in practice? 2 trips to the Children's Healthcare in ATL ER with worsening symptoms including a call from school nurse that his pupils were dilated uneven and he needed to be looked at. CAT scan, MRI and EEG fine-neurologist said just come back for 6 week f/u. Prednisone no help Motrin no relief from headaches. Made it through 1 day of school that week. Saw sports concussion specialist last Thursday morning who took him out of school for that day and Fri and no stimulation, no activity through entire weekend. Took him off Motrin since doesn't seem to work anyway. Still had a couple of headaches and then back to school yesterday w/ 1 hr in clinic for a bad afternoon headache. Completely fatigued w/ muscle soreness. Now what? Any suggestions. All indications are that this is PCS but drs not even sure he had a concussion-so frustrating!!!

Hi and welcome,

so sorry to hear of these children dealing with PCS.

You may want to repost on our PCS/TBI forum as the members there can possibly offer best advice
here is the link
http://neurotalk.psychcentral.com/forum92.html

all the best

Dear Suzelder,

I am so sorry to hear about your son's injury and understand what you are going through. You are absolutely right, it is so frustrating to watch your child suffer and to feel so frightened and desperate.

It is horrible to not be able to control the headaches. As a Mom, we feel that we should be able to make our child feel better and it is devastating when we can't. Do know that it will get better in time.

Is your son out of football for the rest of the season? I know that can be devastating to a kid but highly recommend it no matter what. His brain is fragile right now as it is healing. Another hit (even a minor bump) is a really big deal right now.

I would also consider keeping him out of gym class at school until you are 100% sure all symptoms are gone and that he is fully recovered. It is not worth the risk.

No two concussions are alike therefore, treatment can vary depending on the symptoms. Basically, you are reacting to symptoms as they present. At this point with your son, it is important that he rests and to avoid anything that may trigger a headache.

I am concerned that the Motrin is not working at all and he is not receiving any pain medication for the headaches? Headaches aggravate PCS and make the symptoms last longer. It is hard to heal your brain when it keeps getting aggravated by headaches. He needs sleep, rest and minimal activity right now.

I wonder if the Motrin dose is not high enough? At 11 years old, my daughter was taking 400 mg of Motrin which is an adult dose. Perhaps ask your doctor if your son can have a higher dose and perhaps even overlap it with Tylenol? Alleve is also worth trying.

At 8 weeks out, my daughter started to take prescription medications to help control the headaches. It was a bit of trial and error with a few different meds. If you would like more info on this, let me know

Very important to stop any activity (physical or cognitive) when a headache starts. Do not try to push through the headache as it can aggravate symptoms and make the headache worse. Cognitive exertion includes reading, computer, school work, etc and that can all be just as aggravating to his condition as physical activity or worse.

For example, if your son is taking a test at school and a headache starts....he should get up and go the nurse immediately. Don't try to push through just to finish it. Get out of that situation before the headache worsens.

School should at least lighten his workload and possibly give your son other accommodations while he recovers. The last thing that he needs is a stack of make-up work. Timed tests were a problem for my daughter among other things. If you need ideas/info about dealing with school, let me know

I reiterate, it is NOT common for symptoms to last as long as they have with my daughter. She had two concussions within minutes of each other which is why we believe the PCS has lasted so long with her. Again, I mention this so you know that your son is likely to recover very soon.

The advice and care that he receives right now can make ALL the difference. My best piece of advice, is to avoid another head injury at all cost. Avoid football for the rest of the season and any other contact sports until you are 100% positive.

Also trust your instincts. If something is wrong with your child, you know and don't let anyone tell you otherwise.

You asked why no symptoms for two weeks and now the horrible headaches....that is an impossible question to answer since the brain is so complicated and we cannot see this injury.

There are too many possiblities to list ....here are just a few possibilities that come to mind... it is possible that he did not recognize the symptoms, it is possible that the cognitive and physical exertion after the head injury aggravated his condition.

It is also VERY common for kids to overlook symptoms and to try to be tough for various reasons. One big one, is that they want to continue their sport and worry that if they mention that they have a headache, they won't be allowed to participate.

Also I believe that falling off the stool was a symptom. My daughter lost her balance a few times right after her head injury.

You mentioned muscle soreness? Where is that? My daughter also injured her neck and shoulder in her accident. She was treated by an orthopedic doctor for that also received physical therapy which helped a lot.

Please feel free to PM me if you would like to call me with any questions or for support.

I will keep you and your family in my thoughts and prayers,

Glad that you found this board...tons of great people with very helpful info. Take it all in and trust your instincts... don't hesitate to get additional medical opinions if something doesn't sound right to you. Even the doctors are learning about PCS and how to treat it.

Thank you for the responses. I have been away from the site for a few days as we deal with all of this. The school has been great with accomodations so far. The IMPACT testing was done on day 10 at school and her numbers were very low. Thankfully, we have that test available for follow-up so we can see if her numbers go up over time. We are going for some imaging this week, and that will determine the course of events. I took her for a one hour massage over the weekend, and that helped her to relax. It did not do alot for any of the symptoms, but was good for her sense of wellbeing. As you all have noted, it is amazing how this has put our family and our lives on hold. I was asked today about doing something next week. I can't even imagine what next week holds in store for us. It is just day to day. I am glad I found this group.

Thanks for the response Tralee. No he is been out of football since these symtoms started and no Pe w/possibility of any contact. We broke the news to him that he is out of football for the season. Had to not knowing of he had 2 "hits" although the dr is still suggesting that this could just be migraines since we don't know for sure. BUT he has had a constant headche for 3 the last 3 weeks. Somethimes a dull ache,a "2" on his scale up to a "9" or over(when I took him back to ER). I was worried about too much Motrin as I was keeping him on it (low dose only 3 tsp, definitely not 400 mg) regularly thinking it would help keep the headaches at a manageable level.I have a call back in to the dr to see what to do since the last 4 days have not alleviated them. Muscle soreness in his legs,knees and hips. school has been supportive and lets him take time to rest at nurse's but not sure he isasking to go as often as he should. Said they wouldn't do the IMPACT test on him because he's too young. Snowdaykids I'm with you on the our life is on hold, feel like I am holding my breath. hang in there. Thanks again Tralee. You guys are in my prayers as well-

Hi Suzelder,

How old is your son? Some don't feel that the ImPACT test is reliable for children under 13 however, my daughter first had it at age 11 and it was helpful. I understand that you are not sure if he had a second hit but he did have one, right? If so, I don't understand why the doctor is suggesting that this could "just be migraines". Too much of a coincidence that the migraines started after a blow to the head and he also had the balance issue. Not all doctors and people you will meet get it since many are still learning about concussion. Trust your instincts, So sorry for all that you are going thru

Dear Snowdays,
I am happy to hear that the school is supportive and helping. That makes a huge difference. We had a hard time with our school for a long time and it made the situation so stressful. It is difficult for some to understand or accept an injury that they can't see. We too continue to have follow-up ImPACT tests and find the information helpful. I have also taken my daughter for a massage since her injury and it did her a world of good as you described. Anything that can help her relax is helpful. Please feel free to PM me anytime if I can help in anyway. Hang in there. It will get better in time.

Tralee,
My son is only 10 and is small-68 lbs. I checked and his Motrin dosage he was taking was 300 mg. The problem with the PCS diagnosis is we are not positive he had a concussion in that game. No symptoms, I just saw him sustain a big blind hit. It just took a few minutes for him to get up then he ran back to the line, says he didn't feel dizzy/fuzzy(but he may have been). Then 2 weeks after the game without any symptoms(besides the counter stool incident that next night which is why I recalled that hit the day before).

That's why we saw the neurologist and did the MRI and EEG at that point, to rule out anything else. And that's why I think and the dr agrees that it may have been a MILD concussion and then there may have been another hit within the two weeks after in practice. He has a great deal of experience with concussion patients, which is why it has been frustrating that he can't tell me for sure 100% he thought it was a concussion that started this whole thing.

He doesn't think IMPACT is reliable under age 12 so has referred me to a neoropsychologist to do some other other cognitive tests but can't get in soon enough. You are at their mercy and meanwhile your child is suffering. Believe me, I've researched every condition/possibility under the sun for his symptoms and really the post concussion is the only thing that makes sense at this point. I was concerned about rebound headaches with continuing him on the Motrin. Your thoughts on medicine?

My daughter's MRI came back normal. The doctor says that she must not have had much of a concussion based upon the MRI, if at all. It does seem like that could be the case, because she did not have alot of secondary symptoms. However, she has had a headache every since that day and never had a headache before. She is also tired all the time, spacy, and "slow" in her schoolwork. Perhaps hitting her head has given her a migraine? And the other symptoms are related to the headache? Perhaps the symptoms are related to the pain medication. So now should we treat it as a migraine? Anyone else have thoughts about this, when the MRI is normal?

Hey Snowydaykids,
My son's MRI was normal also but from what I understand it usually is. He is seeing a neuropsychologist tomorrow to check some of the cognitive issues. He has the same symptoms as your duaghter. His sports dr didn't think the Impact test was reliable for his age so referred him to be tested by the neuropych. A football teammate of my son's that had a hairline skull fracture and concussion has only been to school for an hour a day and has 1 hr of at-home tutoring, since it happened 5 weeks ago, and will continue this until December per the neuropsychologist. Don't think it's migraines, but post-concussion headaches. My son never got headaches before either. He is still getting really bad ones when he tries to write, do math or is in a light or nosiy environment. Hang in there, it's difficult!

My understanding is that concussions don't necessarily show up on MRIs. My son did have an inital CAT scan following his injury and maybe a second (I'd have to look it up), but both the neuropsychologist and neuro-surgeon were in agreement that further brain scans would be inconsequential. The simple fact of the matter is that you have to treat the symptoms, and if the sypmtoms are screaming PCS what harm are you doing by following that protocol? Maybe there is a migrane med to consider and even trial, but I don't see how the possibility of PCS can be ignored. Stick with your gut. If you don't like your doctors, don't be afraid to move on. We withstood the condescending judgement of 2 ER docs and a specialist at Children's hospital in Boston before we found docs who really knew what they were talking about.

HELP!! 11 yr old daughter with PCS for 7 weeks ~ mood swings & Rage
 

Hello everyone!! My 11 yr old daughter has been suffering from PCS for almost 7 weeks from falling off a bike without a helmet at her friends house... Horrific migraines, nasseau and vomitting for 1 week straight vomitting, now just when it gets super intense, confusion at times, blurry and at migraines peak double vision. she has been hospitalized 2 different times at the Children's Hospital in St. Pete. Each time for 5-7 days, and then again in Tampa Children's hospital for 4 days. She has done the mag sulfate iv, steroids iv, depakone iv, torodol iv, topomax, ultram, and phenrgan. mood stablizers, prozac etc...... she is finally getting some relief from th constant intense migraines!! She still gets them but just not 3-6 times everysingle day. now its about 1 maybe 2 times a day.
Well last week after 3 days of being on a whole new slew of meds including a few I wasnt thrilled with and had already put a call into our psychiatrist (she is also ADHD) to ask what he thought about them. But before I got the chance to speak to him my daughter went into a MAJOR VIOLENT RAGE AND THEN WANTED TO KILL HERSELF. it was so bad that she had to be baker acted!!!
She is home now, and the psychs all think that the benzos thy had her on must have triggerd it. Sh doesnt remember anything at all about it!! She woke up at the hosp. crying and scared, yet she was awake when w got there she even gave her statement to the dr and police then passed out. She wasnt given any medication. We are just going to be able to get her MRI tomorrow (b/c she had her braces on and was too sick to even go get it done) to rule out any possible damage etc... now this is a REALLY GOOD GIRL who is in honor classes doesnt get in trouble has tons of friends etc....so that behavior is VERY out of the norm for her....
Has anyone else had issues with any of this including the uncontrollable rage and then amnesia after it???
so worried!!!!!

PCS in children
 

Hi, I was wondering who the Dr.'s were that really understood your situation? I'm in the Boston area and have been dealing with my son's PCS symptoms and had also had condescending judgement from Children's Hospital Boston neurologists. It's been very frustrating finding people who really understand concussions and it's aftermath. Thanks for any help you could provide.

PCS and rage
 

Hi, my 11yo son has been suffering from PCS and has definitely had rage episodes. I completely feel for what you are going through. It's been a very frustrating time because many Dr.'s have not been very helpful. My son has had two concussions in a two week period and the rage/violent issues began the night of the 2nd of the two concussion close to each other. He also was admitted to a psych facility after being in Children's Hospital Boston. Children's was very quick to get rid of him after an MRI and short EEG came back fine. They just said that it must be an underlying psych issue and there was nothing else they could do. At the psych hospital, he was fine, no episodes, no meds and the Dr.'s there said it had to be from the PCS. A few days after being released, the rage started again....but not as bad. It has been 4 1/2 weeks since the rage episodes started and they are definitely less frequent. A new neurologist that we are going to started him on Trileptal yesterday to see if it will help to calm the brain while it is healing. I'm hoping that this will help.

Has there been any improvement since your post?

So sorry I'm just responding. I didn't not see this with the crush of the holiday season. Anyhow, I would highly recommend Dr. Neal McGrath. He has an office in Boston/Brighton. Google his name and you will find his website. He is a neuropsychologist who had a son with a concussion. He got it right away, and offered REAL help. We also sought the help of Dr. Robert Canto who is a neurosurgeon. He practices out of Emerson Hospital in Concord, Mass. He is one of the country's leading authorities on sports concussions and works with professional athletes. You may have seen him in the news if you are looking out for sports concussion stories. We thankfully were medically cleared through him fairly quickly, but it was some time before we even got in to see him.

The number one most important piece of advice I would offer is to journal you son's symptoms daily. I found that gave me enormous credibility with the doctors. There was no denying what was written in black and white. It also helped us to see quicker than the docs what was working and what wasn't. For my son, complete brain rest (no tv, reading, video games, busy situations) for almost two weeks is what helped him turn the corner. Whether his brain was just ready to heal at that time or the rest really was the key we may never know. Good luck to you. I'm often not on here, so if I can be of any other help, feel free to e-mail me directly.
s.bosco@comcast.net

Hello all,

I posted here a while back and was able to correspond off-forum with sboscoe and her husband (thank you!). I wanted to share what has helped our daughter to get rid of the post-concussion headaches.
Our daughter's most debilitating symptom had been headaches for weeks post-concussion, but one day I looked at her and realized that she was very thin, also. For weeks she had not been eating much because of the headaches and other post-concussive symptoms. She had lost almost 10 pounds, which was way too much.
With our doctor's guidance, we decided to put the weight back on and get her back on her historic growth curve. After only 4-5 days of 3000 calories/ day, her headaches disappeared entirely. It took 7 weeks to get her back to her healthy weight. This was not always easy, as she is a teen and was getting some positive feedback from peers about how lovely she looked when she was underweight. However, she is much lovelier and energetic at a healthy weight and no headaches.
This is certainly not the answer to most post-concussion headaches, but I would encourage anyone to make sure their child stays on his/her historic growth curve during the recovery phase. It is all too easy for them to lose weight when they don't feel well. In addition to the headaches, fatigue, irritability, and mental slowness all improved when our daughter returned to her usual weight. (The headaches disappeared entirely; the other symptoms have improved).

snowdaykids,

So glad to hear about your daughter's recovery. For most of us these PCS incidents can be overcome even though it is a painful, emotional, grueling process. Unfortunately for some unlucky few it never goes away. Wish you all the best.

sandy

Advice for 19 yr old with PCS in Boston
 

Hello, I am so happy to have found this forum. I feel like I am on my own in helping my daughter overcome her post concussion syndrome symptoms.
My daughter is a college student in the Boston area, a 25lb weight fell onto her head 4 months ago, it was a grade 2 concussion, she stopped all of her sport activities (she is on the crew team); had to drop one of her classes because of the horrible daily headaches. She was home for the holidays and really rested for a whole month. I took her for a 2nd opinion out here while she was home, the doctor put her on 50mg of elavil. She has been on the medication for 5 weeks. She still gets headaches everyday from concentrating, loud noises, bright lights, she is tired. Just not herself. She saw a new doctor last week who seemed to take an interest in her suffering. He wants her to get an MRI and see a doctor at the Faulkner Hospital/Graham Headache Center at Brigham Women's Hospital.
This would be her first MRI for this. I have been reading that an MRI and/or CT scan will not show anything. What do others think of getting an MRI now?
Has anyone else gone to this headache clinic and if so, whom did you see and did they help you? Any comments on the medication or anything else we can do to make our daughter whole again?