Worried Mom...HELP!
 

My son did two stints in the Army, the second included a tour in Iraq for 15 months. He suffers TBI from artillery concussions.

He is working at the local VA hospital doing odd jobs to make some kind of income and is also on unemployment.

He called just now to say he blackout this morning while driving and jumped a curb. I tried, by phone, to get him to go to the ER TONIGHT at the VA hospital...he won't go. He is afraid, 1) his auto insurance won't cover the front end damage to his alignment and 2) his drivers license will be taken away...DUH!!

What truly scared me was that after this even this morning he drove nice 11 yr old niece 30 miles to visit relatives and this could have happened again while he was driving 60 miles an hour with her in the car.

He has been told he is having mini seizures...Complex Partials I think they are called.

I need advise as to how to make him get medical care when this happens...within a hour of the event. This time he decided to wait until he get to work at the VA hospital on Monday where he will tell the social worker who oversees in work program.

I am so frustrated.

Dear Stitcher

You are doing something. And honestly I hope you will make sure that
he doesn't do anymore driving of other people. I am really sorry he isn't
listening, wishing I was close enough to give you a hug.

He will still have to live with the experience probably even on Monday of
losing the experience of driving. When he tells the person at the VA
hospital. Because hopefully this person will get him into a doctor.

He needs to get onto medication. And you have the diagnosis correct
it is Complex Partial and honestly it might not have mattered if he had
gone right in. They still might not have seen a seizure.

But I'm going to say some prayers that he and any he are around stay safe.

I have two grown sons. And one 18 year old that has experience seizures
for 12 years. He wont be able to drive.

Donna:grouphug:

Tough situation
 

Hi Stitcher,

I can understand how scared and frustrated you must be. We brain injury victims are not always the easiest folks to deal with. The damage often robs us of our capacity to be self-reflective and once we get an idea in our heads… I understand too your son's fear of losing his independence. I often want to do things that transcend my abilities and my family has to intervene.

I’m afraid that’s what you might have to do here. If he continues to drive in his current condition there is a strong chance that he will kill or injure himself or someone else. If he doesn’t tell his doctor about his blackout, you’ll have to. He might be angry with you for a bit. However, you know that without the TBI, a young man who would signed up to protect the interests of his countryman in a foreign land, would never want to put them at risk at home. I just wish more people understood the high price many servicemen and women are paying on their behalf.

Your son is lucky that he has you looking out for his interests.

If I may ask, have they categorized your son's TBI as either Post Concussion Syndrome (PCS) or Diffuse Axonal Injury (DAI)? Fewer than 30% of DAI patients ever drive again.

Good Luck
:hug:

Hockey,

Interesting statistic about DAI. I thought DAI was just a common form of PCS. I have not read anything about diagnosing DAI vs PCS. What reports have you found.


Regarding driving. Some states have stricter laws than others. call the DMV and ask them about how your state handles such issues.

I am confused at to why your son is not on a medical retirement from the military. Sounds like he should qualify. Has he applied for SSDI yet? He should give it a try.

Some metropolitan areas have ride assistance to people like your son, If there is a mass transit bus system and such, they are required by ADA to provide door to door service to people like your son.

Here in Idaho, we do not have a bus system so I do not have access to the service. In California, it is very common to find the door to door service. It is often called Paratransit.

Has your son had a rehab therapy using the light board? It is a common driving analysis tool. The flashing lights can also evoke a seizure.

Your son is missing out if he has not asked about seizure medication. If it helps, he could keep driving. If he waits too long and has an accident, meds might not get his drivers license back for years. They usually want you seizure free for a year or so to get your license back after an accident.

I know what he is going through. I had a few sidewalk scares before I fessed up and stopped driving eight years ago. I went to rehab recently and the therapist tried the drivers training car with me. I was fine on quiet streets but was overwhelmed on narrow busy streets.

Brain boo boos
 

Hi Mark,

While they share some common symptoms, my neurologist and neuro-psychologist both consider PCS and DAI different conditions.

There are quite a few distinctions but here are the big ones:
1. Manner of injury: DAI is caused by the violent rotation of the brain inside the cranium (shaken babies, car accidents, etc...) as opposed to contact with an external object.
2. Unconsciousness: Unconsciousness is a major indicator of DAI. Ninety percent of DAIs never regain consciousness. The ten percent of us lucky enough to wake up have severe impairments compared to our pre-morbid function.
3. Damage: As opposed to PCS where damaged can be localized (focal point), DAI causes significant damage to all areas of the brain. In scans, the DAI brain shows considerable shrinkage and torn and damaged axons in all lobes.
4. Diffuse axonal injury is permanent. There is little improvement over time, even with therapy.

Thank you all for you replies. My son is 35 yrs old. He is not a kid anymore.

I just got off the phone with him and he isn't going to listen to me or anyone else. He wants for "someone to just fix this. Everyone is making this more than it is."

The only reason he saw a doctor today...and that frustrated him because he never sees the same doctor in the VA clinic (welcome to the VA system)...is because I called the hospital and sought out the Social Worker who is assigned to him and who placed him into a job in the hospital delivering office supplies...he isn't happy about this either, but he can't find a job in the "real" world.

She summoned him to her office and asked him about his weekend, etc. He told her all was fine, nothing happened. Now I can see that I should have given her permission to tell him I called, but I did ask her not to tell him. She did consider the fact that he had an event over the weekend to be "serious" which is why I called her.

I will call her again tomorrow and talk to her again. I told him on the phone just now that I worry that he will have an event while driving and kill himself and/or someone else. His reply, "That isn't going to happen. I know the time of the day that these things happen to me!"

My son is very hardheaded about things and difficult to get through too. I wish I lived back home, but I don't. I moved north three years ago to be closer to my grandchildren. My daughters both moved north about five years ago.

Push come to shove, I may just move back just to try to make him tow the line.

Feel for you
 

Dear Stitcher,

Like I said, we brain injury patients can be difficult. Now that I'm more aware, I'm so grateful to my husband for all the times he stopped me from doing things when I was really out of my head. The poor man took a lot of abuse. Frankly, as my awareness is still diminished, I think it's my family that suffers the most.

Just from your note I can tell that your son is hurting a great deal. Having a TBI is frustrating, confussing and just plain scary. Could the social worker get your son into a support group with other TBI vets? If he'd go, it might be the first step on the road to acceptance and recovery.

In the meantime, do whatever you have to do to keep him from driving.

Good Luck

Hockey, he refuses to even discuss a support group with me..."I don't have time to listen to all the stories." I don't believe he realizes how good it may feel to find that he is not alone.

I will mention this to the social worker tomorrow.

Thanks
:Thanx:

Been there - and still visit
 

Dear Stitcher,

I know where your son is coming from. At first I was too sick to know anything was wrong. Even now, after seeing all the diagnostic tests and living with all the deficits, I still have moments when I think it can't really be true.

Whether or not you can talk your son into going to his support group, you should consider joining one for TBI caregivers.

By the way, you're a great mom!

That is surprising information. I have never heard anything like it before. My research shows DAI as a common subset of PCS. The shaken baby/car accident can cause the same physical forces as a contact with an external object. Most car accident brain injuries are due to impact with an external object, i.e. A pillar, B pillar, roof, windshield, dash board. DAI is known to result from any traumatic impact or shaking of the brain.

All of my injuries have been along a single axis with a very minor rotational component. The coup contra-coup forces of a linear impact (concussion) have similar damaging effect as a rotational injury. If the linear force is strong enough, there is axonal tearing between the lobes and the corpus colosum and milder axonal tearing between lobes and within lobes. LOC (loss of consciousness) has proven to be a leak indicator of outcome except for those in a coma.

Many times, an impact with an external object can have both a linear component and a rotational component. As the head is whipped forward, it is stopped by the object. It was rotating about the axis of the neck and moving forward. The forward motion is stopped by the object and the rotational motion is stopped by the object.

A hockey illustration could be this. The player has his feet swept out from under him by a clipping motion (hit behind and below the knees)As he falls back and to the ice, his head has a vertical down component. He probably tuck his chin to his chest in a reflex action. As his back hits the ice first, his head rotates about his shoulders/neck with his forehead moving down and his chin moving horizontal away from his chest. This rotation stops when his head hits the ice. The downward impact (which is much more severe) also stops at the ice. Both may have a contra-coup response if the head bounces. This has the effect of doubling the impact force to the brain.

As you can see, there are both rotational and linear forces with contra-coup forces.

It appears your docs use the same information source as WIKIpedia. If you read beyond the first paragraph, it become obvious that the first paragraph does not fit with the rest of the information. Most articles about DIA and PCS overlap them greatly. In fact. mild DIA is often referred to as the cause of PCS. PCS is actually a cluster of symptoms that manifest days to months after the impact. DIA is the physiological damage done as a result of the insult, some immediately, some as a longer term result of cellular changes.

This discussion only shows how much of the PCS/DIA arena is still uncertain. Doctors, whether M.D. or Ph.D. or Psy.D. try to sound authoritative with whatever information they have gathered. A broader investigation shows how problematic it is to be authoritative with the lack of understanding even in the finest research studies.
They are right about the permanence of DIA. But PCS has permanent symptoms too. Neuro-plasticity can only go so far. DIA means a wide area of damage. Hard to rewire around such a wide area of damage.

<While they share some common symptoms, my neurologist and neuro-psychologist both consider PCS and DAI different conditions.

There are quite a few distinctions but here are the big ones:
1. Manner of injury: DAI is caused by the violent rotation of the brain inside the cranium (shaken babies, car accidents, etc...) as opposed to contact with an external object.
2. Unconsciousness: Unconsciousness is a major indicator of DAI. Ninety percent of DAIs never regain consciousness. The ten percent of us lucky enough to wake up have severe impairments compared to our pre-morbid function.
3. Damage: As opposed to PCS where damaged can be localized (focal point), DAI causes significant damage to all areas of the brain. In scans, the DAI brain shows considerable shrinkage and torn and damaged axons in all lobes.
4. Diffuse axonal injury is permanent. There is little improvement over time, even with therapy. >

Wikipedia doesn't give medical degrees
 

Dear Mark,

I don't like my neurologist, but I do think his understanding of brain injury is a little beyond Wikipedia. On the report I got from my neuro-psychologist (whom I do like) DAI and PCS are seperate and distict diagnosis. By the way, Wikipedia doesn't hand out PhDs either. Although I hear there are some web based universities happy to confer degrees on cats.

Stitcher
 

I'm sure you don't want to do this, but where I live - in Texas - you can arrange a court order to the VA's psychiatric hospital. No one will be happy, but if it keeps him alive or keeps him from a serious injury to himself or another . . . .I believe you would start by seeing a social worker at the VA hospital or by going to a civilian Judge in the county/district. Best wishes and blessings to both of you in this challenging time. As you can see from the many responses to your post, you are not alone - you have us. :hug: billie And PS: your son should qualify for both VA and possibly SSDI disability benefits.

Hockey,

I was not trying to say that your neuro used WIKI as an information source. I was trying to say that it appears that the people who contributed the WIKI on DAI appear to have used the same source for information as your neuro.
Much of WIKI is copied or paraphrased from other written sources.

Long ago, DAI was just a theoretical diagnosis based on symptoms. There were not any ways of imaging DAI. The 6 Tesla MRI's were capable of doing it but were just used in research. A 1.5 Tesla MRI can image the long term damage and atrophy but not the early cellular damage. Its resolution is about 1 millimeter.

The books that discuss DAI do not separate it from PCS and other closed head injuries. PCS describes just a syndrome. It is not a disorder. It is a cluster of symptoms that appear regularly in patients who likely have had a closed head injury by way of an impact.

An important bit of information to understand is the difference between a Syndrome and a Disorder, especially as used in the DSM-IV.

SYMPTOM

-refers to an observable behavior or state.
-there is no implication that an underlying problem necessarily exists or that there is a physical etiology.
-the simplest level of analyzing a presenting problem.

SYNDROME

-the next higher level of analysis
-this term is applied to a constellation of symptoms that occur together or co-vary over time.
-the term carries no direct implications in terms of underlying pathology.
-Whether, in fact, certain sets of symptoms co-vary with one another is an empirical question.

DISORDER

-like a syndrome, refers to a cluster of symptoms,
-but the concept includes the idea that the set of symptoms is not accounted for by a more pervasive condition.
-As with symptom and syndrome, there is no implication of etiology

DISEASE

-a disorder where the underlying etiology is known.
-It is the highest level of conceptual understanding.

We can easily get sidetracked if we focus on a diagnostic term. The symptoms are what is treated, not the diagnosis.

Diagnosis in closed head TBI or MTBI is still very imprecise. One study even reports that the term Diffuse Axonal Injury is a misnomer.

When one tries to develop a prognosis by use of imprecise diagnostic terms, there is a great opportunity for error. I can find more published reports that refute the prognosis of your number 2 and 3 statements than any that support them. Only WIKI supports 2 and 3. The footnotes to the WIKI article do not even support 2 and 3. The studies report that current imaging technologies are beginning to be capable of discerning the microscopic damage. Only in-vitro studies can actually see the cellular damage and mechanism. For example, they will impact a live rat's head then dissect it to observe the brain cells. In other studies, they stretch live brain cells in vitro and observe the progression. This level of understanding of the real time, real life damage and mechanisms in humans is just educated conjecture.

This concept of trying to get a finite diagnosis to use to determine a prognosis is highly problematic.

Regarding the stats (2 and 3) you posted. I still have not been able to find them except in the WIKI.
<2....Ninety percent of DAIs never regain consciousness....>
A serious omission is present in this statement. It should read "Ninety percent of 'SEVERE' DAIs never regain consciousness"
I have not seen anything that represents the 3 statement.
<DAI causes significant damage to all areas of the brain. In scans, the DAI brain shows considerable shrinkage and torn and damaged axons in all lobes. >
I find studies that equate severity of DAI to observable DAI. Less severe (but still severe) DAI is often limited to the white matter and regions between lobes, etc. More severe results in DAI throughout the brain with some lobes having more injury and some lobes having less. The frontal and temporal lobes are commonly more severely indicative of DAI.

What this information and the studies show is that there is a serious need for a neurology sub-specialty in closed head MTBI and TBI. Most of the published articles finish with a statement about the need for further study and better imaging techniques.

But then again. symptoms are treated, not diagnoses. One common idea presented is that it is problematic to try to definitively define a closed head injury.

it would be appreciated if this thread would stay on the topic posted by Stitcher

if you wish to have a discussion on DAI and PCS definition/classification etc it would be best to start a new thread on it

thanks

Thank You Chemar

I was just getting ready to ask them to move it to a new thread.

Stitches

This is a very hard subject for all parents with children to discuss.

It really doesn't matter how old the child. Even if they are just 18 and
just got their license. And then start having these issues.

I hope the social worker continues working with him. I can say though
that honestly there isn't anyway if he choses to drive that you can
stop him. Unless you go and take both the key and the vehicle away.

Donna:grouphug:

Dmom, thanks for the kind words.

My heart tells is to fly down to Florida and do just that, but then in my head I know that this would not be the best solution. It would only foster resentment and anger.

So, I will just sit and wait, and hope for the best. I was not able to contact the social worker today, but do plan to do so tomorrow. I just need to know that someone...even though probably overworked with too many cases; the VA system...is looking out for him as I would be if I was closer.

I am just so frustrated that he told the social worker and the neurologist yesterday that nothing eventful happened over the weekend. That is irresponsible, but then as I read in Medscape, Neuropsychiatric Sequelae of Traumatic Brain Injury, Jeffrey Nicholl, MD; W. Curt LaFrance, Jr., MD, MPH, Published: 08/12/2009
I can see that the years ahead will be full of mom-worry and challenges.

You are right it is hard to know you have a child of any age who is not in the best of shape.

Thanks,
Carolyn

p.s. Thank you Chemar for getting this thread back on track.

Taking Action
 

As upsetting as this may sound to do, you need to do this. He is endanger to himself and others. Check with your local doctor on how to have him committed to the local emergency room where he can be evaluated.

Hope this has helped.

I agree with Dr Diane. You need to do everything you can to get someone to pay attention and ask about your son's seizure/driving. If he is anything like the other soldiers who have returned from war, he is also suffering from PTSD. This will likely cause him to be overprotective about his own condition. It can also cause him to be paranoid of the intent of other who are trying to help.

My daughter came back from Kirkuk after a year as a combat medic. After 3 1/2 years, she is still struggling to accept the truth about her condition.

Your son did an admirable thing with his service. He does not deserve to fall between the cracks. Only people who take a serious interest will be able to get the VA to take notice.

With the memories he already has, he does not need to add a memory of the person he hit with his car and killed, even if it was due to his injury and not his behavior.

This memory issue was what helped me accept the need to stop driving 8 years ago. I had just moved to beautiful Idaho and had dreams of hunting, fishing, hiking, skiing, etc in out great outdoors. When I decided I needed to stop driving, I knew I was letting go a some great opportunities.

Stitcher,

My best to you and your son as you struggle with this. I know it will not be easy.

btw, Why can't you fly down to visit him and be his driver as he needs to go places. You could say, "Let me drive you around while you get this figured out." You don't need to make it confrontational. often, the VA will let you make comments through the back door without exposing you. Then you can be there when he needs to deal with their 'observations.'

Stitches

I can totally understand why it seems impossible and sometimes is to drive
or fly and do his driving for him. I can also understand how you really want
to be there for him. I hope that the VA hospital he is associated with will do just what Dr. Diane suggested, and admit him.

But I know from experience with people with a seizure disorder. And with people who have seizures, that come from other things like what has happened from him. That even if you can get him admitted, if he doesnt
show one during the time. It might not matter.

I've personally got a hope the social worker, has a idea what is up. And is
doing something about it. Also a suggestion, ask for the social workers
email. So when you can't get ahold of them, you can send the information
that way.

Donna

Stitchers

Also get ahold of the parent or guardian responsible for the 11 year old he
drove. Or any other minor he could have the chance to drive.

Explain the situation, and request they not do this again. Also explain that
if he is in a accident, they could be questioned by CPS. Child Protective
Services, as to whether they realized and put their child in danger.

The odds are that the group just might find so.

They need to rethink the driving issues. If it is because they don't have
a car. And she needs a ride, they could do the driving. And he go along.

Donna

Stitcher,

Properly presented, a person with an intermittent seizure disorder or history does not need to show a seizure during an EEG for a doctor to prescribe a seizure medication. I have been on Neurontin for 8 years yet my EEG has never shown a seizure.

I was on seizure meds for three years in high school even though my EEG did not show any seizures. I went back on meds for a year in college.

I have the occasional simple partial seizure (sometimes called absence seizure, called petit mal back when I was in high school.)

Some seizure meds can also help with some anxiety issues that he may have due to PTSD. I was on phenobarbital in high school and it took my anxiety down remarkably. I was able to let my fingernails grow for the first time in my life. Previously, they were always torn back to the quick.

If your son is anywhere near St Petersberg, Dr Robert W. Thatcher is an excellent resource to look up. He has worked at the VA doing clinic and research in your son's area of need. I have his e-mail address. It is qeeg at appliedneuroscience.com Replace the 'at' with @

You might try asking him for directions to pursue if he is not in your son's area.

Again, my best to you and your son.

At the very least I would tell niece and her family about the blackouts and strongly suggest they don't get in the car with him.

If they can help to persuade him to got for further dr visits & follow ups that would be a plus.

I agree with Jo*Mar.

And Mark that was some good advice. And thanks for the information
that I didn't realize about you. It makes me a kindrid spririt of yours.

I was treated for seizures for 16 years and then about 4 years ago started
taking topamax for migraines. And now take neurotin for fibromyalgia.

Both help with their needs. But I see other things with the topamax too.

Donna

Sorry I haven't replied to this thread for several days. I have been almost full-time with my two grandsons, the youngest is autistic and we had no support for him today so I was just me and the boys!!

Dmom said: "Also get a hold of the parent or guardian responsible for the 11 year old he drove. Or any other minor he could have the chance to drive."

The problem with this is that the parents of the 11yr are my daughter and son-in-law (and step sister to the two boys), who is her step father. If I told them about the black outs while driving they would be on the phone yelling at him about being irresponsible and not in a supportive way.

I don't need anyone yelling at him in a non-supportive way, but in a supportive "are you nuts, please don't do it again and/or please talk to your doctors/social worker and be honest with them."

I know that if my 11 yr old granddaughter's biological father, who she has been visiting, had known about the black out he would have disallowed her to go with my son (her uncle). He did three tours in Afghanistan and understand these things.

I commented to this son-in-law (the 11 yr olds step-father) a couple of days ago about how my son will not "own up" to his condition and be honest with his doctors or social worker at the VA. He shrugged his shoulders and said something like well it is his problem, nothing we can do about it.

I was furious, to say the least. But then neither of them are very supportive people to begin with, unless it is a problem within their immediate family.

I will work on my son over this weekend and try again on Monday to reach the Social Worker at the VA again.

Stitchers

It is the biological father that you should contact in this case.

And I'm guessing that when the girl returns home it wont be a problem.

Also maybe if you can get ahold of the b father, he would be of help to
you. Even though he isn't part of your family, related anymore. He
might still care enough to help with this situation.

I know that I have a relative that would do some helping if necessary.
So maybe give it a try. And I totally do understand not saying a thing
to the ones that are in the state your in.

Donna