Son with PCS & knows everything - help?!
 

My 25yr old son with PCS (3 mo.) reminds me of me at that age -- at 25, you believe that you know everything and that no one else (especially a parent or other older person) could possibly contribute anything of value to your life.

I have read posts from parents who despair that their young adult children with PCS will not listen or take advice and end up having a driving accident; and posts from people who say, "Do not depend on the person with PCS to be the best judge of his/her condition!"

But what can you do when the know-it-all 25yr old says, "You have no idea what I need! I do not need a Personal Injury Plan [actually required by our legislation!] or a Chronic Condition Management Plan [covers costs for long-term access to a multi-disciplinary care team]. You are just making me feel upset and like I need a cone [marijuana]!"

So we have a smart, injured young man whose condition means that he (a) resists information and advice and (b) is very adept at blaming others for his poor choices and unhelpful addictions.

Would love to hear from other parents who have successfully navigated this situation.

Hi Karina, sorry to hear of your son's injury.

I'm a survivor rather than a parent, but to help facilitate discussion, what symptoms is he currently presenting? Three months is relatively recent in the PCS world, is he currently receiving medical treatment for his symptoms? Does he have restrictions on driving?

As a patient (albeit in my mid 50s instead of mid 20s) I responded to messages like "in order to drive again you need to achieve this, in order to return to work again you need to do this; so framing it so that positive outcomes are achieved by planned goal setting was helpful for me as a patient.

Hopefully other parents of TBI patients will comment from that that perspective.

Best to you both as his recovery progresses.

Sometimes, even many times, you are helpless to help them. I have three adult children under 33. We live with the condition. Today's young adult culture seems to make this even worse. His condition makes him even more likely to exhibit this stubborn behavior.

To paraphrase an old cliche'. How many parents does it take to change an adult child's mind ? Only one, but the adult child needs to be willing to change.

If his driving is a risk, can the authorities require he take a driving test for the brain injured to rate his risk level. There are a series of tests commonly used to rate someone's ability to handle the tasks of driving. They test reaction time, peripheral vision, executive functioning, distractability, hand to eye coordination and other motor skills. His driving license/permit can be suspended. His car keys can be taken away.

A night in jail/lock-up may cause him to ask for help, especially if a judge puts him on probation as a condition of release.

In his state, he runs a very high risk of running afoul of the law. In North American, studies show that 60 to 80% of incarcerated individuals show evidence of a brain injury. The behaviors that follow a brain injury can cause lots of trouble.

It can be a miserable existence as we as parents endure the stress of our stubborn adult children. Been there, doing that. Been told that all her problems are my fault but she refuses to talk to me about them.

And parents of teenagers thing life can be tough ......

Hi KarinaM
Sorry I don't have much practical advice to help - don't have any children myself but can empathize as I have an 18 yr old nephew who is a handful. The only thing I know of is an organization in NZ that is a peer support group for people with brain injury. Maybe there is a similar group in Oz. The link to the NZ group is:
http://www.thinknz.org.nz/

I did a quick search for an Oz group with the same name but couldn't find anything - but would imagine there must be a group some where.

Good luck and hopefully one day he'll realize he's lucky to have such a wonderful Mum who cares so much.

Replies
 

Some responses:

I wouldn't say that he is receiving 'medical treatment'. Only got the diagnosis of PCS 3wks ago (from a good neuro-surgeon), as this condition seems to be totally alien to neurologists & GPs here. (We are in the national capital, but it's obviously not a big enough city.)

It's difficult to know which of his symptoms are linked to the PCS, but we have had some of these checked out and no one seems to be able to find other causes. I am also aware that the timing of some of these symptoms is important. Symptoms include:

- light-headedness; band-like headaches; back pain; shoulder pain; chest pain; neck pain; rapid heart rate on mild exertion & sometimes when at rest;

- sensitivity to light & noise; sensitivity to watching movement; head/ temple ‘tingles’; ‘brain pain’ from movement such as nodding head;

- fatigue; insomnia & sleep disturbance; vivid, disturbed dreams; inability to visually focus on things close up (increases light-headedness);

- inability to read from bright white paper & electronic screens (increases headaches and light-headedness); head discomfort travelling in lifts (elevators); inability to regulate body temperature properly;

- poor cognitive function (scattered, foggy thinking; inability to focus); inability to process new information/complex thoughts; urinary frequency and urgency (esp. when headaches & lightheadedness are bad); occasional pulsatile tinnitus.

The only 'treatment' he is receiving consists of instructions to minimise electronic screen use (doesn't appear to be successful) and taking a low dose of fluoxetine for anxiety. He takes acetaminophen for headache (trying to reduce amount of ibuprofen) and occasionally Stemetil (prochlorperazine) to see if it helps reduce lightheadedness (doesn't usually make a lot of difference).

The neuro-surgeon wants him to have a neuro-psych assessment but we are getting indications that the insurer (worker's comp case) will not agree to pay for this. My son comes across as too lucid and articulate.

Although he has confined his driving to very local trips, my son has told me that he has experienced periods of 'bad lightheadedness' when driving, especially in the evening and/or when he is feeling anxious. Stopping at intersections makes him headachey/lightheaded.

I believe that the rules here about 'fitness to drive' are that the treating GP has an obligation to report any patient about whom there is a medical concern in relation to driving ability. But if the patient doesn't say anything, how would the GP know?

Because driving = independence, it is virtually impossible to persuade someone not to drive. He is counting on a graduated return to work (a short drive away) and -- most worrying -- has agreed to house-sit for friends (a bit further away) for 6 wks. Why? Here is a telling comment about priorities: "Because I want my friends to know that they can count on me."

All of this is why it is so important for someone in authority, whom the person will trust and believe, to explain what PCS means in terms of what allowances need to be made for the condition and what will help and hurt the brain in the healing process.

P.S. Even knowing that I am a professional health policy researcher/analyst, and that there are no PCS specialists in our city, my son attributes my PCS research to OCD (Obsessive Compulsive Disorder)! Gee, in that case, there must be a lot of parents out there with OCD...

Why is he using acetaminophen rather than ibuprofen ?

His skeletal pain suggests he needs some serious care/treatment for his back, neck and shoulders. Getting his body healthy can reduce overall inflammation that effects the brain.

What kind of care has he received for his skeletal issues?

Hi KarinaM
You haven't said what his original concussion injury was - understand if you can't say this due to the personal injury claim - but it might help others here to figure out where his problems stem from.

Also re his addictions - I'm sure you're aware that may be causing some of his problems - of course no teenager, especially in his condition, is willing to admit that or to consider the long term damage. I have personal experience of a close relative who has permanent serious mental health issues due solely to long term indulgence (no other injury or health issues). I don't want to alarm you and I know you'll be doing your best to keep him safe. PM me if you want to discuss anything in private.

Mark - We have seen lots of seemingly legit health/medical sites (eg, brain & spine clinics with neuro-trauma patients) advise concussion patients to avoid painkillers such as ibuprofen because of the possibility these medications may increase the risk of bleeding.

Forgot to mention that my son is also experiencing gastro-intestinal problems, so that would be another reason to minimise ibuprofen, even tho he knows it might be a more effective painkiller. The problem is what to do if you need painkillers over an extended period of time -- nothing really seems free of potential side effects, especially with long-term use.

He is not currently receiving any care or treatment for the aches and pains unless he pays for physiotherapy or takes my suggestion and gets a Chronic Condition Management Plan that includes treatment from several health care providers.

Bluesfan - His head injury happened in at work January when a heavy box (flatpack furniture) felt onto his head from a shelf about 1m above; about 10 min. later, he hit the same spot on a metal beam that forms part of the shelving. Symptoms began 70hrs later and have been pretty full-on since then.

He has found out that even a small amount of marijuana creates huge lightheadedness problems (same with a sip of alcohol) but habitual use is hard to shake, esp. if he is in an environment/situation when he would normally use it. He knows that nicotine is also not helping anything physically, but he is finding it challenging trying to look after both his physical health and mental health at the same time.

Just a thought Karina
PCS is big in the news here at the moment in relation to sports injuries (rugby & league in particular) - do you have any family, friends co-workers etc who have any connections to sports teams or clubs. They could maybe put you in touch with someone who could find out who the club uses as their consultant on this type of injury. I realize your son's cause of injury is different but the damage would be similar and should be within their range of expertise. Also if your son learns how common this injury is among sports players he might be a bit more accepting of his need for treatment.

Also the insurance co. not paying for the neuro/psych seems down-right mean penny pinching. Surely they paid for his initial emergency treatment and assessment (Xrays, MRI etc) for diagnosis - then they should obviously be covering this. I'm not sure if you have an insurance commissioner or ombudsman in Aust. but I'd threaten to take the matter to them if they refuse to meet their insurance contract obligations.
Hope this is of use - Keep fighting.

Karina,

I stopped taking acetaminophen because it has ways it can negatively impact the brain. I wish I could find the study. At this point in time, he is likely long past the bleeding risk. I can understand it during the first 2 weeks or so. But, if his docs say No Ibuprofen, you gotta do what you gotta do.

A google search shows some new research shows some neurological and psychological benefits from acetaminophen.

I'll have to do some more reading. Maybe I should switch back to Acetaminophen.

Poor cognitive function is a major reason to push for the NPA. My suggestion would be to see if you can get the neuro surgeon to insist to the insurance carrier that it is a necessary procedure given the symptoms. I was pretty lucid and articulate after my injury also, but I couldn't solve a flashcard problem 7x4=?

[QUOTE=bluesfan;1137593]Just a thought Karina
PCS is big in the news here at the moment in relation to sports injuries (rugby & league in particular) - do you have any family, friends co-workers etc who have any connections to sports teams or clubs. They could maybe put you in touch with someone who could find out who the club uses as their consultant on this type of injury. ...
Also the insurance co. not paying for the neuro/psych seems down-right mean penny pinching. Surely they paid for his initial emergency treatment and assessment (Xrays, MRI etc) for diagnosis - then they should obviously be covering this. ...'

Yes, the Australian Institute of Sport, located here, has provided some useful contacts, primarily sports physicians rather than actual brain injury specialists. Too small of a population here, I think, which is why people end up going to Sydney for diagnosis and treatment of various conditions.

The referral to the neuro-psych for testing was from a specialist we consulted for a 2nd opinion (not impressed with the local neurologist). This was w/out pre-approval from the employer's insurer, as we were prepared to pay for that.

We did get a GP referral for that consultation but hadn't provided it to the insurer since we weren't sure what would come of the consultation & whether my son would want to see that specialist again.

Costs haven't been too bad so far, thanks to Australia's excellent health care system and what the insurer has agreed to cover. Re future tests and treatment, I think the insurer will put most weight on their doctor's report, but their real concern is getting him back to work. If their doc doesn't think a neuro-psych assessment is necessary, then it will be a case of our specialist, who is concerned about my son's condition & recovery, vs their doc, who may tell the employer & insurer what they want to know. :-(

My son gets some credit for this one
 

You could almost see this coming -- the predictable line from the doctor when things get to a certain stage and he knows that the parent has taken an active interest in her child's condition:

"I'm not exactly sure what’s wrong with you," the doc says to my son, "but the fact that you are keeping a detailed record of your symptoms in a daily journal is probably not helping, and I also wonder whether your mother’s involvement might be counter-productive…".

While feeling that this was yet further confirmation that the word ‘neuro’ in someone’s title is no guarantee that his understanding of PCS is better than yours (esp. if you are a pretty cluey parent who has been researching PCS pretty intensively for 4 mo.), I mumbled something deferential & polite and noted that my son’s journal had proved to be useful on a number of occasions, such as at visits to the Emergency Dept. to investigate acute symptoms.

At this point, my son leapt in and said, in so many words:

"Look doc – my symptoms are very real, and my mother has nothing to do with it. I know that she can be a bit overbearing at times [thanks, kid...], but what has been happening to me has been totally independent of any contact that I have had with my mother. The symptoms began before she was even aware of what had happened, and everything that has happened since – including new symptoms and the worsening of some existing ones – has been very real. I am experiencing these things, and they have nothing to do with whether I see my mother or with anything that she says!"

Champion performance -- and confirmation that his cognitive and verbal skills are still pretty sharp, despite the fairly debilitating physical symptoms!

And confirmation, as if any were required, that there is still a long way to go before the health-literacy ideal of 'information sharing' between patients, carers and clinicians is truly realised.

You are right about the new information coming out on acetaminophen...

Here is one example:
http://psychcentral.com/news/2015/04...ons/83491.html

http://psychcentral.com/news/2013/04...ars/53821.html

Hi Karina,
I'd been wondering how he was doing.

Was this the Neuro in Sydney or local?

This was a follow-up appt w/the neuro-surgeon who had previously provided the PCS diagnosis based on my son's symptoms more than meeting the 2 main sets of PCS criteria. He seemed to be more knowledgeable that the local neurologist whom we had seen & was certainly more communicative.

He had received the neuro-psych assessment (we hadn't), which obviously didn't provide him with the link to the 'organic cause' thing that these clinicians seem to be looking for -- although whenever I have mentioned the option of sophisticated diagnostic imaging in Sydney (DTI, fMRI), they say, 'No, I really don't think that is necessary...'.

Clinicians get really frustrated when they are unable to find obvious 'causes' for things & when they can't make sense of what's going on. That's why they need to have a much more open mind about the info (personal & research-based) that patients & carers can provide -- ie, more of a partnership model that respects the contributions of patients, carers and health professionals.

The only positive thing that we came away with was recommendations for a neurologist in Syd. & in Canberra, which we will follow up.

I have also managed to get an appt for my son to be assessed by the Rehab Medicine doc at the hospital who can refer him to other health professionals within the public system. But, as ever, the key seems to be to find someone who is actually familiar with PCS and understands its many manifestations.

The experience so far has been quite discouraging, ("Well, we're really back to square 1, aren't we?", my son said), especially given that he thought he did quite badly on the neuro-psych tests. (I don't really understand how these tests can determine cognitive damage if there has been no 'baseline' assessment...)

In the meantime, he has continued to experience a range of physical symptoms including severe lightheadedness; headaches; gastro problems; back, abdomen, neck and shoulder pain; disturbed sleep; noise & light sensitivity; intermittent clear unilateral nasal discharge (sometimes mixed with blood -- suspicious for CSF but 2 beta-2 transferrin tests were neg.).

Neuro-surgeon suggested getting neurologist to focus on the most important specific issues, such as the lightheadedness. While I understand the reasoning (after all, I have read, 'How Doctors Think'!), this just smacks of looking at individual symptoms in isolation rather than (a) listening to the patient and (b) putting together the pieces of the big picture.

A NPA works without baseline testing because baseline testing is more valuable as a basis for interpreting sports related neuro cognitive testing (ImPACT, CNS Vital Signs, CogSport, BrainMinder, etc) used after sports concussions when return to play decisions are being made.

The NPA tests are scored against a database of the general population normalized for age and education. Plus, there are some tests that measure intelligence that can be compared to current function. The premise is that intelligence has less deterioration from brain injuries than cognitive function.

For example, I score in the top 88th to 99th percentile of the population on the intelligence scales but at the bottom 10% for processing speed, 5% for auditory memory, 12% for visual memory. There is no way my low memory or processing speed could have allowed my intelligence to develop to the point it did. This means my cognitive functional decline was after my intelligence developed and that my cognitive dysfunctions are organic.

Once your son gets his report, he will be able to try to accept the reality of his dysfunctions so he can try to learn work-arounds rather than constantly being frustrated as he fights against them. The self-doubt is very stressful. Moving on is ieasier with understanding.

btw, With all the symptoms you son has, I think it is valuable to try to separate the physical ones from the cognitive/neurological symptoms so they can be treated separately. There are no treatments for a broad range of concussion symptoms. For example, it sounds like he needs some specialist care for his vertebra, thoracic and cervical. Very few neuros have the skills for this. A Physiatrist (Physical Medicine and Rehabilitation) are often better.

My best to you both.