Happy New Year To All!

Wow, 2011 has been one roller coaster of a year for the Samson family in so many ways!

Our Crazy Family - Jake, Petra, Kali, Mike (my apologies to my family for the dorky pic, but we seem to be photographically challenged!)

• Jake's PCS was finally diagnosed and we found MMTR.
• Jake had some pretty great breakthroughs with regard to his anxiety.
• Jake has some pretty great BMX buddies that look out for him and drive him around!
• Mike and Will from INFLOW Bike and Skatepark organized the first SHELL PARK BMX Jam 2011, which was attended by over 300 people.
• Mike made some pretty great connections thru his business Twisted Sticker.
• Twisted Sticker has continued to grow so much that we are thinking of kicking Mike and his printers out of the basement.
• Kali and I have discovered Zumba and have fun doing it together every Friday night.
• Kali has also found her quirky, slightly wacky sense of humour.

We have had our struggles; figuring out how to parent on the same page, and to two very different children, financial issues that come with being self employed, extended family drama, educating the school, pet problems, home renovation issues (or lack thereof), etc etc.
Looking back, I am thankful that all we have gained and overcome.  But, I am also quite confident that 2012 will be all that much better!

Cheers!

Sometimes you are on the right track and you don't even know it!

Jake had a rough night last night for a few reasons, I won't go into detail, but two good things came out of it.

1.  There are often triggers that will elevate your levels of frustration and anxiety. 

However, it is often not that one specific trigger that will cause the meltdown, it is the next tiny little thing that sets you off.  Pity the person that is behind that tiny little thing, because they don't have a clue as to what just happened.  Jake discovered one of his triggers last night when his sister was teasing him by hiding and then jumping out at him.  But when she jumped out she also slapped him across the head.  Hard.  And unexpected.  That started a string of undesirable events. 
But, at the end of it all, while I tried to talk Jake through his feelings he said to me:

"When she jumped out and hit me I was so mad!!! She hit me right on the side of my head, does she not know that I have Post Concussion Syndrome?"  

The underlying anger was due to anxiety about being hit in the head again, and his sister's lack of compassion.  WOW! For us to be able to get to the root of the anger is huge!

2.  Sometimes you have coping strategies that you don't even realize! 

After the $%&* hit the fan last night, Jake was in his room.  This is the time that he often lashes out in anger, even resorting to physically damaging things.  But last night it was pretty quiet, which led me to go and talk to him rationally and eventually come to the revelation above.  However, before that conversation, I opened the door (carefully, after knocking, as I was not sure what I was going to be walking into!)...he was cleaning..??!! Hanging up clothes, sorting Xmas presents and putting them away.  "Wow, I love it when you get sent to your room and you clean!"  I said, jokingly. 
"Cleaning makes me feel better" he said.  WOW again!  I was pretty quick to point out to Jake that he had just revealed a coping strategy that worked for him.  We have done a lot of work on those when dealing with anxiety, but for him to actually say it, that simply put, was profound. 

Yay Jake!  (And to think that all of this is happening while he is OFF the anxiety medication.  He has been off for 6 weeks now.)

While Jake was at his treatment at MMTR Health today I knew there was another accomplishment that I had wanted to share with the team there but could not recall it at the time, and this was it!

Jake is ready for Christmas now!

I just had to share this!  Jake decided his Christmas stocking was too small, so he made a new one.  He spent an hour and a half  sewing it BY HAND!  He even put a little loop on top to hang it by. 
This is my kid who was misdiagnosed with ADHD.  He was able to make a plan, execute it, and complete it!  I am impressed!

PS -He also added a strategy game called Hi-Q to his Christmas list because he said " it is good for his brain!"  Gotta love him!

Thank You Moore Muscle Therapy and Rehabilitation - MMTR

Jake and I took our usual weekly trip to MMTR today for his physiotherapy and as I walked in I realized that we were there empty handed.  
I had added them to my "To Do" list a few weeks ago, thinking I would be prepared and have a little token of my appreciation for them closer to the holidays. And yet, there I was, a few days before Christmas, without chocolates, candies, or even a card for this wonderful team of people who have helped our family in so many ways.

As I left the clinic today it really hit me just how much the treatment that Jake has received from MMTR has affected our lives.  And so, I am adding this post to my blog in their honour.  Thank you to Terry, Jared, Tim, Bert, Dragana, Marios, Cale, Ismail, Barb, Kim, and Ann for all you have done for Jake and helping us to "find" parts of him that had been lost along the way!

We were referred to MMTR by Mark from  joyride 150, after he heard about Jake's diagnosis with PCS.  He was actually sourcing out possible treatments for Drew Bezanson, pro BMXer who had been off his bike after a brain hemorrhage 3 months prior.  He was in the midst of arranging to have Drew flown out here from Nova Scotia for treatment.  We called Terry Moore of MMTR and after an indepth conversation about Jake's symptoms, misdiagnosis and lack of support we booked an assessment for the next week. 

Long story short - Terry was able to tell us that ALL of Jake's symptoms over the last 2 and a half years were most likely caused by his multiple concussions in 2009.  And I mean all of them....the nose bleeds, the acid reflux, and even the naseua he experienced 2 weeks after hitting his head.  You know how they say to be concerned if you vomit after hitting your head?  It does not only mean immediately after!  Chances are the "swine flu" we thought Jake could not shake was actually caused by his brain injury!

 Terry and Jared did a thorough examination of Jake, testing his muscle strength, balance, and many other things that I do not want to go into too much detail about.  Not because it is top secret, but because I would hate to get any of the terminology wrong!  So, the Coles Notes version is that Jake's muscles in the back of his neck are in constant spasm, and the tighter those muscles are, the harsher the effects on his neurosystem, other muscles, etc etc.  The most amazing, yet simple test they did was to have Jake stand with his arm out, and hand up at a 90 degree angle, as if to say "stop".  Try it....  chances are you will have no problem getting your hand to 90 degrees.  But, if you have PCS, chance are that you CAN NOT!  (sidebar - Jake and I had coffee with a young girl in high school who is most likely suffering from PCS, going thru testing right now.  And guess what?  Right in the middle of Starbucks I asked her, her mother, and Jake to try the hand test.  Her mom and I could do it.  But she and Jake could not.  Who needs a neurologist to diagnose when you have the hand test?!!!  Ok, so it is not scientific, and maybe not everyone has the same issue, but it hit home for me!)

Anyway, back to the short version of the story - through treatment at MMTR, Jake has found relief for many of his symptoms!  Within 2 sessions he was sleeping better, falling asleep quickly and sleeping through the night, which he had not done in months.  And within about 4 sessions we noticed his appetite had come back.  Jake had not been eating much at all, had no interest in food, but now he eats like a typical teenage boy!  And, best of all, Jake's headaches went away!  He went from having a headache every single day to about one, maybe two a week!!!!!!!!  This was such a relief to Jake after having a head ache every day for over 2 years.  
As he said after having the best sleep of his life after the first treatment,  "Those guys are awesome!  That Terry is one smart man!" 

We still have some work to do, we need to eliminate the headaches completely and improve Jake's focus and concentration, so we will be back a few more times and Jake needs to hold up his end of the deal by diligently doing his required stretches. 
But as I was leaving today when Terry asked me how Jake was doing,  I realized he is doing really, really well, and I have him to thank! 
Merry Christmas!

Wipe Out! ......Great Site for Awareness!

Wow, I love this site.  It is actually a movie, but also a website  geared to those who are into extreme sports and very wisely uses videos and youtube to reach them.  

Be sure to watch Crazy Crash, Shocking Aftermath.  Scary but true.  Wiping out and hitting your head is not a laughing matter!
And the point the doctor makes about a child suddenly doing poorly in school and having emotional changes brought tears to my eyes, because I wish someone had recognized this in Jake 2 and a half years ago!

Wipe Out Website 

Gotta stimulate that brain!!!

So, we have not taken up swimming yet, but we are trying to follow up on what the neuro and Terry at MMTR told us - Jake needs to stimulate his brain.

While the neuro suggested Jake watch episodes of Murder She Wrote or Columbo (just slightly dating himself there!!!!) we went with trying movies with a beginning and an end and a thought provoking plot in the middle.
While I have to admit that Jake's reciting Napoleon Dynamite is pretty funny and weirdly accurate, it is not stimulating his brain unless you count the memorization of Napolean's one liners. So tonight we will watch Matt Damon in the Adjustment Bureau. Hmmm, I will let you know if Jake is able to sit thru the whole thing. He was misdiagnosed with ADHD for a reason you know!

Pro BMX Rider is back after being off the bike for 5 months with a concussion!

  Drew's Joyride Video

I am posting this video for several reasons-

1.  With the right doctors, support and therapy at the right time, you can make a full recovery.

2.  With patience you can get back to doing what you love.

3.  We think Drew is pretty amazing, as a person and a pro BMX rider.

4.  This video has had 263,000 visits in 2 days!  That shows how good Drew is and how many people are glad to see that he is back!

Jake had the privilege of meeting Drew Bezanson, an amazing pro BMX rider from Nova Scotia last month.

However, they did not meet at a bike competition or a publicity event.  They met while they were both undergoing therapy for Post Concussion Syndrome at MMTR in Guelph.  (More on them later for sure, we have many things to thank them for!!!).  Actually, we have Drew to thank for the "hook up" to Terry Moore at MMTR.  Indirectly, the bike park that Drew rides at when he is in Toronto heard about Jake's concussion and contacted us to let us know that they had found this clinic that  treats PCS, and they were having Drew come out for treatment. 

Long story short, Jake ended up doing a few therapy sessions with Drew.  They stretched together and they talked BMX.  Well, Drew talked, Jake was on the quiet side, "he is a PRO rider mom, right beside me doing stretching, it was a little intimidating!!"
Drew had been off his bike for 5 months, resting before coming to Ontario. After doing a month of some pretty intense therapy at MMTR in Guelph he got back on his bike on Dec 1st.
And this is what he did!!!!  You would not think he was off for a day!

Jake joining competetive swim team?!!??!

We had a third neurologist appointment today, and Jake had his 3rd Evoke Potential Test, the last of which was done in June 2011.  The first one was done in March 2011 (about 1 year and 7 months after his first concussion) and showed he had a 20% "slowing of his brain". 
Basically it is a test where electrodes are attached to his head in a darkened room, where he has to look at a red dot on a red and white checkered screen for about 3 minutes, with one eye covered alternately.  The test measures his brain's reaction time to the changes on the screen, as the checkers alternate red to white.  Laymen's terms of course, I am sure a neurologist would explain it differently  But this is how I see it as I watch it being done.  The results are a graph showing the two different reaction times for each side of his brain.  There are a bunch of numbers to one side, where some are more meaningful than others.  The important ones should be at around the 100 level.  Jake's have been fluctuating between 107 and 128.  Last time, he presented with a 10% slowing, but today's did not show any improvement, in fact it looked more like the first one, with what looked more like the 20% again.

UGH!  So what does this mean?  Well, the neuro did ask if Jake had hit his head since the last one.  Not a good question!!!  (Of course he has not, but I guess the lack of improvement warrented the question!)

Basically it was suggested that Jake avoid "youtube" watching on his Ipod, (which he does tend to do in the mornings and before he goes to sleep), find another physical activity to de-stress and watch movies that make his brain think, with a beginning and an end (unfortunately, Jackass and Hot Rod do not fall into this category!)  I get it, it makes sense to me. 
However, then the suggested activity somehow turned to competitive swimming, so while the doctor was going on somewhat of a tangent about the benefits of competetive swimming, and the physical demands put on the swimmers as they go to meets in an organized manner, etc etc....Jake started rolling his eyes....we lost him... 
And I have to admit, while it makes sense to me, I kept picturing Jake in a Speedo, shivering while waiting his turn to compete in the chaos.  Nope, we will have to look into other alternative activities for Jake.  He will not be shaving his legs for speed any time soon!

Jake's PCS Timeline

Ok, Here it is!
This is an outline of all the symptoms, medical tests etc etc that Jake has had since his first concussion in August 2009.  My reasoning for including this is to create awareness for other parents or people going thru what we went thru and are still going thru.  If this can lead someone else to ask their doctor the right questions, to ask for the support needed and get answers faster, then I have accomplished what I set out to do.   I have since added notes in red italics beside some of the symptoms with updated info that we now know, hopefully it will be helpful to others who may be experiencing the same misdiagnoses or are trying to understand symptoms.
Happy Reading!   (my apologies for the formatting, copying and pasting does not always turn out how it should!!)

PS, this is also the list that I recently gave to all of Jake's teachers as I really did not feel they were fully understanding what he has been going thru. I hoped this would shed some light on the struggles he has had as well as a reason as to why, unfortunately, school was not at the top of our priority list.  Getting thru each day was our goal.  I still regret many of the mornings that Jake said he "just needed a day" and I forced him to go to school.  That was his way of trying to say his body was tired, overstressed, overstimulated, and yes...."needed a day!"

Jake Samson – Timeline of Post Concussion Syndrome / Traumatic Brain Injury

 Late August 2009
     Hit head while BMX riding with a helmet on.   Slurred speech, off balance and unsure of exact events a    few hours later.  CT scan was done – normal results.                                           
    Severe daily headache for 2 weeks – pounding, dizzy, unbearable.  Went back to the hospital to be checked – simple neurology test done – normal results. 
    Told to take pain relievers as often as needed.  Took ibuprofen daily for 3 weeks in order to function.       
                                                                                  

September          

     Nausea, thought to be Swine Flu, lasted about 2 weeks.  (This was NOT swine flu.....we have since found out that occasionally concussions cause vomiting and nausea up to several weeks after the fact.  We often think a person is ok if they do not vomit, that it is only serious if they throw up, but that is so not true and it can even be a delayed reaction)

     Increase in anxiety, anxious about school, being sick, unable to sleep at night.                                           

     Hit head again while on bike (now we know his balance was most likely still off, he should not have been back on a bike so soon, but back then there was not the awareness that there is now and the doctor said to take a few days off until he felt up to riding again).

 October - December 2009

      Constantly had trouble breathing, severe chest pains, dry chapped lips, pounding headaches, dizzines,    sleeplessness, depression, lethargic, achy muscles, lack of appetite.   

     It was very difficult to get up and go to school.  All blood work was normal.

     Panic attacks started, mostly at night or in the morning.   

     Anxiety levels went from a 5 to a 10 on a scale of 1-10.

     Severe emotional outbursts, violent behavior not seen before.   

     Talk of self hatred and suicidal thoughts.                                                                                                                                                    

Jan 2010             

      Diagnosed with moderate to severe Acid Reflux after doing a Barium Meal test.  Took prescription meds for three months on and off before it went away.    We were told the Acid Reflux was due to anxiety by the pediatrician.  But my question of why the anxiety levels suddenly increased were never answered by that doctor.  We found a new pediatirician after, with the help of a naturopath, I realized the Acid Reflux was due to the high levels of pain relievers taken.

 

April 2010          

     Severe panic attack led to hospital visit and referral for a psychiatric assessment. Prescribed anxiety medication at a low dose.  Immediate difference was seen within 3 weeks.  Jake was happy, calm and relieved to not feel out of control.

July 2010           

     Diagnosed with “Social Anxiety without Agoraphobia” and ADHD (questionable) after finally seeing the Psychiatrist that was referred to us after the hospital visit.

                                                        

Dec 2010           

     Started medication for ADHD 

     Incidents of anxiety and anger increased again.   

     Ongoing headaches and sleeplessness.

March 2011       

      First Neurologist appointment after long wait.  Neurologist confirmed Jake has Post Concussion Syndrome / Traumatic Brain Injury NOT ADHD.   

      His Evoke Potential test showed a 20% slowing of his brain.  This slowing causes concentration problems, short term memory loss and mimics ADHD.   Neurologist said it would take time to recover, and hopefully he will make a full recovery, but only time will tell.  

     ADHD meds stopped.
      New pediatrician found,  recommended for her experience with ADHD and Anxiety.

June 2011           

     2^nd Evoke Potential Test shows a 50% improvement, with only a 10% slowing of his brain. Headaches remain consistent on a daily basis.

Oct 2011             

     Started a new therapy for Post Concussion Syndrome  at MMTR Health which involved deep muscle massage and manipulation and specific exercises.  Doctor confirmed that ALL the symptoms from the last two years are due to PCS.   

     The muscles in the base of Jake’s neck are still in constant spasm, causing the headaches.  Those muscles are being trained to relax and then will be strengthened.  The goal is to be headache free, increase attention span and ability to focus.   

     So far we have gone 4 days at the most without a headache. Jake goes to therapy twice a week for 1.5 hours and will reduce to once per week once we can get 5 days headaches free.

     Currently weaning off anxiety medication as it can interfere with Stage 3 sleep, which is the stage where tissue healing and rejuvenation occurs.   

     The meds may be delaying Jake’s recovery.

     Next Evoke Potential test Dec 12^th.

Current Symptoms as of Nov 2011:

                            Headaches

                            Fatigue

                            Occasional ringing in ears

                            Concentration and focus challenges

                            Tendancy to blurt things out without thinking, mostly is school.  Sometimes will add totally irrelevant comments to conversations.

Dec 2011
Increase in anger and aggressive behaviour at home only.

The evoke potential test shows no improvement, and is actually worse than the last one.  Jake was even asked if he had hit his head again... The slowing of the brain is close to 20% again.

Prescribed Tegratol to stabilize Jake's moods.  The neurologist feels his emotional outbursts are similar to an epileptic attack and this will curb the mood swings.  This drug is used for epilepsy and bipolar disorder.  (the mood swings and uncontrollable emotions do look like bipolar, I will give it that for sure!)  We did not fill the prescription as we felt it would control the symptoms only, not help Jake heal.  This was a hard choice as we were at our wits end with the behaviours.

January 2012
Weekly treatments at MMTR Health continue.
School refusal starts, struggling academically, dealing with being bullied at school, anxiety and panic attacks related to school.

Feb 2012
Finished therapy at MMTR Health due to Jake feeling minimal physical symptoms.  Also due to the fact that Jake was refusing to do the stretching exercises required for his full recovery!  However, he can now sleep through the night, falls asleep quickly, has a full appetite, minimal if any headaches.
The only remaining symptoms seem to be emotional, not physical.

Met with a homeopath who recommended a remedy to break down Jake's "walls" and lessen anxiety.
Jake is rarely in school, we are trying for half days only.

March
We start to see results with the remedy, small but noticeable changes.

April 
Formally withdrawn from school.  Neurologist agreed that nothing is being gained by Jake being in school, other than stress and anxiety.  Informally home schooled for the rest of the year.

May
We have our kid back.  Homeopathic remedy has shown huge leaps and bounds in regards to the anxiety.   Without the stress of school Jake is able to work through the small anxietys and overcome them.  No emotional outbursts or aggression.


June 2012
Evoke potential tests do not show much improvement, but neuro is still hopeful.


 
August 2012
Even though the homeopathic remedy has reduced the anxiety and anger we worry that it may not be enough to get Jake back in school.  We decide to give him every possible chance at success and start a new prescription for anxiety at a low dose with the plan to be short term only. He is still taking a homeopathic remedy as well.


October 2012
Back in school, a new high school with new peers and accomodations.
Next evoke potential testing is in November.

Jake's passion is riding BMX. And we have decided not to take that away from him.

When Jake was two and a half he would go to the local dirt jump track with his dad with his Tonka trucks.  He would play in the dirt while his dad raked and groomed the track for the local youth to ride.  His dad, Mike, rode occassionally but usually left it to the younger generation to take over the track.  Jake got his first BMX bike when he was in Senior Kindergarten.  He must have been 4 and a half, it was March of 2005.

He has never looked back.  Most of Jake's free time is spent at the local outdoor skate / bike park where he rides for hours on end in the summer. When he was younger he and Mike would go early on the weekends, before the teenagers rolled out of bed and took over the park.  Now, at 13 he is one of the gang and rides with the older guys as well as the younger ones who look up to him.  He can keep up with the 20 something boys, and gets invited to go to other parks with them when they do the park runs.

Sadly, this is how Jake got his first two concussions that were close together.  He should not have been back on a bike as soon as we has, but at the time we did not know that.  More about how it all happened soon, I will get there, but I know it is going to take time to write it all down! 

So for now I wanted to share this video of Jake riding.  This is what he does, he loves it and if we took it away from him I think we would have a depressed kid on our hands.  We have been down that route and I do not want to go there again!  So, we support him and are proud of him.....(as well as having the best helmet we can get, ensuring everyone knows he is not to push the limits and reminding him to take it easy).... And here he is!

Anxiety meds slow brain recovery! or so they say....not a chance we are willing to take.

I know that I have to start from the beginning in order to get my points across to parents and those with post concussion syndrome....however, it will take more than a quick entry to do so.  I will be doing that asap!

In the meantime I wanted to let you know that after being on Prozac for 1.5 years we have weaned Jake off it.  Not because we are sure he is able to cope with his anxiety.  Not because we think he is 'over" his panic attacks.  Not because he was having a negative reaction to it.
But because he is actually (finally) being treated for PCS right now with physical therapy, deep tissue massage and muscle manipulation.  And, it turns out that this doctor believes that Prozac and most other anti-depressants can hinder the recovery of PCS patients.  And there are studies to back him up.
Prozac stops the brain from entering the 4th stage of sleep, which is the stage of rejuvenation and tissue repair. 
The very medicine that has given me back my son is the one that may be prolonging his recovery.  So, we are risking the onset of anxiety again, risking the panic attacks, sudden mood swings, even the violent and aggressive behaviour. We may find that Jake's anxiety is too much to handle and are ready to look at other options to help him cope, but for now we need to focus on his recovery and will deal with the emotional rollercoaster that we are about to ride.

Follow us through the maze that is Post Concussion Syndrome

My son Jake is 13.  He makes his friends laugh with his crazy voices and imitations.  He sneaks his pet ferret in his sleeve and takes him to Tim Hortons to share a maple dip donut.  He sports his own style and tried to bring jean overalls back.  And he loves to ride BMX. 

But he had a Mild Traumatic Brain Injury in August 2009, and we lost part of our son.  He did not go anywhere.  He looks the same.  He has Post Concussion Syndrome.

We have been trying to navigate through the maze that is PCS to help him find himself again.  We feel like we are close to the 'exit' but you never know with PCS.  Regardless of where we are in our journey, we felt it was important to share it with others to create awareness and advocacy for PCS.  We want to ensure that others do not  have to go thru what we have and can access the info and supports needed for a speedy recovery.

Stay tuned for more posts to see the chronological order of events that has led us here.