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!"
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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.
New pediatrician found, recommended for her experience with ADHD and Anxiety.
June 2011
2nd 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 12th.
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.
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.
thanks for sharing! we are also going thru this with our 14 yr old daughter!
ReplyDeleteLet me know if I can help in any way! I know it is hard to find the right support for your child! I had to join PCS groups on his behalf to get a lot of the support and answers that I needed. There is a good one on facebook called Post Concussion Syndrome Awareness Worldwide that is very helpful.
ReplyDeleteFirst of all I wish you the best of luck with your son. I have had quite a few concussions myself and I think your decision to allow him to continue to BMX is a good decision. After another "mild" concussion as the doctors put it I just didn't feel like myself. The first few weeks were tough but then things got better. However as the next winter rolled around I started to get depressed, I had also just started a tough program at university (computer science & business administration double degree) and I felt like I was a lot dumber than I used to be. For me I think a lot of my problems were psychological in the end, I also had some anxiety. Since then I started mountain biking (dirt jumping) and I have been a lot happier. I now approach things much more cautiously and really think through what I am going to do. I believe you can still enjoy these things with the proper equipment (a good helmet, I recommend POC) and being smart. Sorry for rambling. I was wondering what the homeopathic remedy was that you were giving your son? One more thing I would say is that your son will be mature beyond his years once he gets through this, I found it tough and I was 17. I think it is important he find friends who understand and can be supportive, this might be hard in Ontario.... I really wish the best of luck to you and hope you and your son find happiness!! If you need any help, feel free to ask.
ReplyDeleteHi Brody,
ReplyDeleteThanks for reading and for your comments! I am glad to hear that you are happy and have found biking to help. It is hard to have Jake riding still, I have guilt about it and worry, but I know it is his lifeline and he would not do well with that social and physical outlet taken away. We do use POC helmets now, (that is a whole other issue, the different levels of protection that a helmet gives!!! We are waiting to get the newest POC but they are hard to find!)
Our homeopath gives Jake remedies that are suited to his individual needs, the first one was to break down the walls, to reach Jake's emotions so that he could work through the anxiety, and then the second was to actually lessen the anxiety. He falls under the natrium muriticum category, but it is a remedy that is prescribed by a homeopath, not bought at a health store.
I did try fish oils as a supplement but mistakenly bought ones that were strawberry flavored to avoid the fishy smell, but it ended up having a weird strawberry flavour followed by fishy burps which did not go very well! But I do think the omega oils would help with the healing of the brain!
I would hope that Jake would come though this all with a level of maturity and positive outlook but unfortunately we are now dealing with him making bad choices and an "I don't care attitude". Hard to know if it is because he has given up trying, or his self esteem has been lowered due to his struggles or if he is just looking for an easy way out. Hopefully we will see the end of this phase soon! If you have any insight on turning it around to be more positive it would be appreciated! Where are you located?
PS you can always email me at petra@twistedsticker.com
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