Caregiver for frontal lobe TBI adolescent: Need help
 

My teenager sustained an epidural hematoma 4 years ago which left her with a frontal lobe traumatic brain injury. Her latest neuropsych eval showed that all of her cognitive deficits are gone so that's great news!

But...We are still left with the emotional and psychiatric disorders. She refuses to go to school. It makes no difference whether I try to talk to her about it, insist she go, or take away privileges. She says her body won't let her go. Usually, she starts out good at a school but some frustration occurs, she runs out and won't go back. Even meeting with the school, instituting an IEP, etc does not work. I have tried online schooling (she says can't learn from computer), alternative education programs, and this last time she only had to go to school 2 hours a day and it was 2 classes that were more fun classes instead of earning credits. I wanted her to start out slow and work her way up, since she had insisted on a full day at that same high school, ran out on the first day before classes even started. She only returned after the 2 hours a day curriculum was tried. She made it through 2 days and that was it.

Today, she was supposed to tour an alternative education program that has a mental health component but she told me she was very nauseated and couldn't go and is in bed.. We just started her on Clonidine about a week ago, and she is to go back into counseling. Problem with counseling is that she is manipulative and not realistic about her problems. It could be months before her counselor actually sees her and not the mask-type behavior she puts on for everyone except me. She shows enthusiasm for things in meetings, and then gets sick as soon as we get home and won't follow through.

We have tried stomach meds, antidepressants, you name it. She has seen 5 different specialists (coordinating thru her brain specialist) and there is no physical component that would ber causing nausea, etc. Sometimes the complaint is headaches too. Antianxiety, sedatives have an opposite effect on her.

I don't know what to do to help her, I have missed so much work that its an issue. I have spent thousands of dollars and days and days in order to help her but I don't have an answer. What else can I do as a parent to get her out of this house besides short trips to the mall, etc?

The more you talk to her or discipline her, the worse she gets. Will be in bed for days. I am a single mom and I really need some advice. This is breaking my heart....I am exhausted and no one listens when I tell them she is not responding to treatment, I am with her all the time and you can't depend on her statements as a method of tracking her problems. But, I have attendance records and school documentation to show that what I am telling them is a fact. I gave them copies, but...nothin'

Welcome to NeuroTalk. Sorry to hear of your struggles with your daughter.

It sounds odd that her recent NP eval says her cognitive deficits are gone. It also sounds like she may have suffered her injury during a very critical time of brain development. If this is the case, she needs someone to help her understand that her judgment system in her brain may be under or undeveloped. This will require that she choose to accept the help and direction of others. Otherwise, you have a 12 year old in a 16 year old body.

Have you had any hormone blood work done? This could be helpful.

Also, what does she relate as the reason for walking out of school? Is she overwhelmed by stimuli?

There is an organization that might be of help to you. NACD has some special systems for getting through to the brain injured. Check out their web site at www.nacd.org

Has she had any opportunity to try a manipulative oriented learning situation? Sometimes, strictly academic educational systems are like banging your head against the wall. Hands on process oriented tasks may be more beneficial.

Has she tried to do any manual tasks/hobbies? Getting her working with her hands can be a good start. She likely needs to build up some self-confidence too.

Are you connected to a brain injury support group? It can be a great help. The BIAA web site can direct you to a state BIA that can list support groups. See www.biausa.org

With the sketchy detail you posted, this is about all I can think of to help. Was her NP Eval a full battery/ 2 to 4 hours or more? Or did they just do a short battery that leaves out many tests? Some info on her NP Eval report would be interesting.

Let us know more and we will try to help.

My best to you two.

She had a full neuropsych eval and all processing, memory, executive functioning, language, etc came back average to above average. What did show as a problem was social problems, anxiety, and somatic issues. When she leaves school she tells me she doesn't know what is wrong and describes it as a fight or flight feeling. I know she has self esteem issues and worries about what classmates think. She also runs if she gets even the slightest bit frustrated. She doesn't do well being told what to do by anyone but me. She will start CBT soon but has not had any education outside of public schools. The school just states that she is extremely intelligent and they don't seem to understand the emotional and psychiatric side of frontal lobe injuries. The school tour she was supposed to go on today will have a low teacher student ratio with onsite mental health but she got "sick" again today and wouldn't go. She is 18 so that brings in its own problems. At times she is appropriate for her age but oftentimes I do see a 14 year old in an 18 year old body and worry that she will always be stuck there. She refuses to go to a support group. She hasn't had any hormone level testing done but has double vision with prism glasses, has had GI studiies for the nausea issue, and vestibular testing done for dizziness. Vestib and GI was normal.


Thank you, Sage

Sage

First, I would talk to the Vocational Rehabilation people about a work program
for her. I would also do a application for SSI. And I would take guardianship
if at all possible.

Because if I read right she is now 18, this means that she is considered a adult now. You will also need a Health form so her doctor's can have you
help with issues. Because if for some reason you switch doctor's or add
one. They could decide that she has to do her own health issues.


When it comes to schooling. Because for some reason it is giving her
problems. I would work on getting her in a day program. Were she would have someone supervising her daily.

When it comes to telling you she is sick. I can't give you answers on this.

Donna

Exhausted,

Dmom was one letter short in her recommendation. Your daughter should be able to apply for SSDI, Social Security Disability Income. This will come with MediCare health care. Since she is over 17, keeping her in a health care plan can become problematic.

I am interested in the WAIS scores. If she is highly intelligent, then her scores in WAIS would show it. But, her processing speed might be markedly less. If she is just at or slightly above 50% in memory and such but higher in IQ's, this shows a residual neurological/cognitive deficit.

High intelligence with even average cognitive functions can be very difficult, especially for the immature person.

You said <She had a full neuropsych eval and all processing, memory, executive functioning, language, etc came back average to above average. What did show as a problem was social problems, anxiety, and somatic issues. When she leaves school she tells me she doesn't know what is wrong and describes it as a fight or flight feeling. I know she has self esteem issues and worries about what classmates think. She also runs if she gets even the slightest bit frustrated. She doesn't do well being told what to do by anyone but me>

Did she get MMPI-II test scores? If so, which scales were elevated? Misinterpreting her MMPI-II can cause a serious misdiagnosis.

The anxiety sounds classic PCS. I need a strong SSRI anti-anxiety med to function well. The somatic sounds classic NeuroPsych misinterpretation.

Does the report show her validity/malingering scores? It may have not been in the report but kept in her NP record. NP's often leave out validity scores if they conflict with the diagnosis, especially for someone with a high intelligence. Ask for the full set of scores if they did not include them in the report. It is her right to have them.

I would encourage a full hormone panel by a hormone specialist, not a generic endocrinologist or gyn. You can find some good referrals at https://www.womensinternational.com/..._referral.html

PCS can really mess up the hormone and neurotransmitter systems. Together, they cause the perfect store of imbalances.

Have you done any nutrition therapy? Do a search on this forum for nutrition or vitamin and you will find quite a few posts. Her brain is likely still dealing with a flood of toxins from her injury. Without a serious brain nutrition regimen, the brain gets stuck playing catch-up but never quite gets ahead enough to continue healing. The classic nutritional needs are B-6, B-12, Omega 3's, folic acid, all of the anti-oxidants, and others my broken mind cannot remember.

Nutrition therapy is a long slow process but well worth it. Keep her away from caffeine and alcohol except for a single serving max of caffeine per day. Her anxiety is made worse with caffeine.

If you haven't already, download, print out, and read the TBI Survival Guide by Dr Glen Johnson at www.tbiguide.com

I know you are exhausted but it will help many of us if you will put a double paragraph space every 5 or 6 lines. Some of us struggle to follow from the end of one line to the start of the next. These same struggles may be effecting your daughter. The PCS subject often is too close to the symptoms to understand the causes. Visual and auditory processing are common struggles.

Guardianship or at the least a Power of Attorney with specifics for her health care will be advantageous. HIPPA can get in the way unless you have these in place. It will also be helpful if you printed out a small note for her wallet that can be presented to police or other officials that can explain her struggles with anxiety and such. If she were ever to have an outburst episode and be confronted be someone who is unfamiliar with her condition, it can save her from lots of heart ache.

I carry one that says: "Please be patient with me. I suffer from a brain injury that causes me to over-react when confronted with shouting or someone barking orders. I respond by getting loud. Any assistance to help limit excessive auditory stimulation is helpful. "

It has been very helpful.

If she will not participate in a brain injury support group, you should go anyway. You will find good support from the others who have to care for similar loved ones. My wife will not miss them but I am the injured party.

If she can start to understand her dysfunctions, she can possibly reduce some of her lack of confidence issues. Understanding and accepting the limitations frees the person to work with work-arounds and accommodations. I believe it is helpful to discuss those limitations and struggles with friends and family. When friends and family understand, they usually become very supportive.

Think of it as if she were wheel chair bound. Her friends would quickly understand her need for help with curbs or reaching a high shelf in the library. If they understand her neurological struggles, they can be just as helpful/accommodating. The more she can discuss these issues 'matter of factly," the less her friends will struggle to help her while not putting her in a place of pity.

I very succinctly tell people that I have almost no visual immediate or short term memory. I might even turn away and describe the very little that I can remember or envision about them. They will often say, Wow, accept my condition and go on without expecting me to rely on visual memory functions. Most people are very understanding, ONCE they understand.

A common dysfunction that may be a part of your daughter's struggle is an inability to recognize facial expressions and social cues. Once she understands this and explains it to family and friends, they will likely give her more acceptance and tolerance. It is no different than being color blind. She is just "facial expression" blind.

I hope you are starting to recognize and understand some of her NP report from my explanations. It can be a life changing event when you start understanding these issues.

My best to you.

Mark

The only way she can get SSDI, is if she has worked enough time or
quarters to have money in the system. I didn't see were mom even
said, she had held a job.

Thats why its only SSI.

Same as my 19 year old.

Donna:grouphug:

It may be an SSI payment but the application uses the SSDI disability criteria. Adult SSI is financial need based payment. As I read the regulations, I was appalled to see that someone could qualify for SSDI based SSI without any work history whatsoever. Maybe the SSA people use the terms interchangeably.

I just looked up the SSA website. I was correct with the first statement. The web site says
<SSI rules about disability

Your child must meet all of the following requirements to be considered disabled and therefore eligible for SSI:

* The child must not be working and earning more than $1,000 a month in 2011. (This earnings amount usually changes every year.) If he or she is working and earning that much money, we will find that your child is not disabled.
* The child must have a physical or mental condition, or a combination of conditions, that results in “marked and severe functional limitations.” This means that the condition(s) must very seriously limit your child’s activities.
* The child’s condition(s) must have lasted, or be expected to last, at least 12 months; or must be expected to result in death.

If your child’s condition(s) results in “marked and severe functional limitations” for at least 12 continuous months, we will find that your child is disabled. But if it does not result in those limitations, or does not last for at least 12 months, we will find that your child is not disabled.>

Those criteria are the same or very similar to the SSDI criteria. This is not an I'm right, you're wrong. It is more that SSA is a very confusing system with overlaps in their regs and terminology.

To make matters more confusing, SSA says
<Social Security Disability Insurance (SSDI) benefits for adults disabled since childhood

The SSDI program pays benefits to adults who have a disability that began before they became 22 years old. We consider this SSDI benefit as a “child’s” benefit because it is
paid on a parent’s Social Security earnings record.
For a disabled adult to become entitled to this “child” benefit, one of his or her parents:

* Must be receiving Social Security retirement or disability benefits; or
* Must have died and have worked long enough under Social Security.

These benefits also are payable to an adult who received dependents benefits on a parent’s Social Security earnings record prior to age 18, if he or she is disabled at age 18. We make the disability decision using the disability rules for adults.

SSDI disabled adult “child” benefits continue as long as the individual remains disabled. Your child does not need to have worked to get these benefits.>

Sage's daughter would be in this Disabled since childhood category. It's a confusing mess.

Mark

In Indiana, or were I did Derrick's paperwork. You file the SSI paperwork,
because if they do the SSDI, they will look at income that you have
put into also. Or meaning, a determination comes back, if you haven't
worked that you don't qualify because you haven't enough money in
the system. When I did Derrick's paperwork, it was for SSI as a disability
and when he qualified, it was for SSI. Because he didn't work yet.

Donna:grouphug:

Was Derrick over 17 when you applied? It appears to be a different process for under 18 versus 18 and over. Leave it to SSA to confuse people.

To Exhausted Sage
 

Dear Sage,

I hear your daughter is struggling to feel normal and get to a place where she can thrive in life. I read your posts and wonder if you yourself have ever gone to counselling to see how you can be more of a help to her? Sometimes when we want to help someone we love, it may be as simple as leaving them alone to figure it out and ask them once in a while "What do you need?" or "How can I be of help today"?

No one likes to be at home doing nothing all day for a long period of time. It sounds to me like you've been trying to "fix" her and that could make one feel like there is something wrong with them and create anxiety. If you give her trust and compassion for what she is going through and some time to let her figure her way out on her own, that may help. Show her what options there are for her, that you trust that she is smart enough to make her own decisions and that whatever she chooses, you will be there to support her.

Maybe getting some counselling for you could give you some insight on how you can be more of a help to her?

I have much compassion for you and I hear that you want the best for her. I hope things work out in her favour.

Take good care.

My daughter and I both have been to counseling. On advice by her Drs and counselor, I have acted in a supportive role in order to let her figure things out on her own. They told me that she wouldn't want to be in the house all the time either, etc. So I went with it...

Now, over a year later, she is worse than ever. She rarely leaves the house, refuses counseling, often refuses meds, refuses to go to school, etc... She has panic attacks when she is out and about around people. Now, ironically, I am told that I should have made her go to school and be out and about that she isn't capable of figuring things out on her own.

That's why I am posting here. Has anyone had experience with frontal lobe TBIs with these issues and what helped?

Her IQ is 112, WAIS working memory 95, processing speed 132, verbal comprehension 107, and perceptual reasoning 107.

Behavior Rating Inventory of Executive Function:
Initiate 71 (98%)
Working memory 79 (>99%)
Metacognition index 77 (>99%)
Global Executive index 72 (98%)

Neuropsych stated that her executive functioning was intact but application was deficient. But at the same time stated that all cognitive deficits were resolved.

Auditory delayed 117 (87%)

Rey Osterreith low average
delayed recall 14 (18%)
MMPI-II not done
digit span subset 8
logical memory II-recall 14 (91%)

Rey Complex figure:
Immed recal 45 (31%)
Delayed recall 41 (18%)

SSRIs have made her nauseated, we have tried Buspar without success. She refuses meds (she will wear the clonidine patch) which includes any nutritional supplements. Can't even get her to take a multivitamin.

Directly after her accident she definitely had difficulty with social cues, would make a face and ask me if it looked like she was mad, sad, etc. The counselor worked with her on that aspect. She has a degree of paranoia of people talking about her, if someone laughs thinks they are laughing at her.

She has agreed to try counseling and school again and will start school again in a couple of weeks. Her first goal is to make it through 5 minutes a day before she runs and then that time will be increased as tolerated. I am praying that after that first day, she will go back and keep trying. With other programs, she refused to go back after that first day.

Anyway, I appreciate all the wonderful comments, and if you have more ideas let me know. Please tell me this gets easier....

I only skimmed the previous posts so if I repeat what might have already been said forgive me.

Basically on the school part, is this regular public school?
It could be just too over stimulating for her still.
Have you thought about trying an online school for her?

My dd used one for getting a few final credits and the one we used let them proceed pretty much at their own pace. A few hrs here & few later in the day even late at night if that is a good time.
Does she do Ok on a computer for short times?

this is the one we used but there are many others available ,some are free if linked to your state school districts -
http://www.connectionsacademy.com/home.aspx

PS - just read that it was tried already... maybe at a later time, or maybe it was the way that particular school software was set up. I noticed some use small fonts and only a narrow portion of the screen.

How did she get the original injury?
car accident , fall , sports.. ??

We did try online, but states she can't work from a computer. The school she will be starting is a school for students that have not been able to attend public school and needs more in depth counseling, mental health professionals, etc. She went to a night high school for a short time and then tried just going to public school for 2 hours a day.

One very small frustration such as having to wait to talk to a teacher, and she's done and won't go back. If a student makes a rude comment, or if a teacher tries to push her to participate, she runs out of the school and won't go back. They have provided areas for her to go calm down by herself, but she refuses to use them. She will call me hysterical and tells me she has to leave right now, that she can't and won't stay. If she has no way home, she takes off walking home...

I am sorry to hear of your struggles. It sounds similar to a friend of mine who was hit by a car and left comatose for 3.5 weeks. He has some OCD like responses. he makes mountains out of molehills.

Her above average intelligence but poor delayed recall is a tough symptom to live with. It feeds her behavioral problems. Has she tried to learn any work-arounds for her poor memory issues. She has good intelligence and should be able to use her intelligence to deal with her memory struggles.

It sounds like a real problem since she does not want to participate in her own recovery. Have they tried to use her favorite activities to get her engaged in life? A recreational therapist may have some ideas.

I wish I could offer more. Have you been to a support group for yourself? The camaraderie of other caregivers should be helpful. The ability to talk about daily struggles and have others who understand can be a great relief.

Hope you can find a good support group.

My best to you.

I don't know a lot about TBI's so i hope I'm not being insensitive on this issue or ignorant. I also don't know much about 18 year olds other than I used to be one (my kid is only 4.)

Seems she is not feeling in control of her life. Things changed that she didn't want. she will have to make these decisions on her own to gain control over what happened to her. You may need to just let her fail awhile and not push to fix it. See how that plays out. She may turn around. However, wth TBI she will need some help with that by presenting options (let her pick which one to pursue) to her and support - much support, when she is ready.

I can recall being in a situation without a TBI -but a situation where I felt trapped. One day I realized there are unlimited options in this world. (I think after reading the book called the option process or something like that.) You can choose just about any option in life. There are so many. You control your life, not the other way around. Even with disability this applies. You just have different tools to use to get to where you want to go. Maybe she doesn't see her options clearly. Find out what she wants and then ask her how she will get there. With that you can support her thought process to make it happen.

Best wishes to you.

must be hard for you all
 

sorry your family are going through this

as mark said, frontal lobe injurys don,t heal in as much that the brain repairs the damage but work rounds can be achieved lack of motivation, head aches, problems planing, personalty achanges are all caused by the injury

so all I can add is art type activities games that challenged her weaknesses but are fun a head injury groups run these type on programs but she should be accompanied this will help her build up some stamina for more formal schooling

its a long hard road I am still on to over come the damage a head injury suport group will help you and your child there is a list on the sticky at the top of the page

my best wishes to you

Yes Mark we make to much or did when he was under 18 to qualify.

We made to much when he was under 18. It makes a difference how
much you make. If you make to much then you can't qualify.

So I was under the impression that this young lady is over 18.

So I was quoting for a over 18 child.

Donna:grouphug:

Thanks for all your posts. I have requested meeting info from a support group for myself and am working on SSDI. Clonidine is out now, she took patch off last night. She was extremely irritable and agitated on it. So I will get with Dr again today to see what to do next. She has a headache today and her vision is "weird". (Her words). Usually excedrin migraine helps her headaches.

"weird vision" is something my daughter struggled with as well. Much less severe injury than your daughter. I'm sorry you're going through this.

I believe you mentioned she was using prism glasses. Has she gone through a course of vision therapy? That was truly a God-send for us. My daughter managed to continue in regular school, but she was having a lot of panic attacks, headaches, nausea. Tried Elavil but that gave her heart palpitations and other symptoms. The vision therapy really helped her re-establish her place in the world (literally, not figuratively). Once that straightened up things seemed to improve minute to minute.

Again, it seems as though your daughter's injury was much more severe. I don't mean to minimize anything...just offering a possible help.

I also think that because each injury, and so then each recovery is
different there is no way a doctor. Can no exactly what is going
to work or not. I hope that you can locate a very supportive group
there locally along with this one online.


I also think it sounds like you might want to see about working through
her depression as much as the TBI right now. I know it sounds weird.
But it sounds like that has taken over.

I really feel for you. If you would like to private message me. That would
be fine also.:grouphug:

Donna

sage,

You might want to try something besides Excedrin. It contains caffeine. You can have her take aspirin and Tylenol which is the same as Excedrin Migraine without the caffeine. I tried taking Excedrin for both the pain relief and the caffeine effect until my doctor read me the riot act. He was adamant about minimal caffeine, especially during the more symptomatic stage.

Some research has suggested that a single serving per day of caffeine might be OK.

Read the Excedrin label to understand how much caffeine is in it. I just checked. Each tablet contains 65 mgs of caffeine and 250mgs of aspirin and 250 mgs of acetaminophen That caffeine amount is equal to one shot of StarBucks espresso.

fight the right fight
 

Exhausted_Sage:

I have memory issues, migraines and was just diagnosed with MS - and I have 3 gifted children. I also have a friend in S. FL with a highly gifted child - that being said I want to give you some ideas on how to approach your issue:

First - rather than fighting your daughter's issues, you need to go to the schoolboard, with letters in hand from her neuro, and psychologist/psychiatryst stating that she has a brain injury, and the resultant effects are that she has an anxiety disorder where she cannot study around other othe students or be in a large classroom setting and that she needs extra time on tests, etc (whatever accomodations she may need).
That she cannot focus on "virtual" school on line because of her vision problems and that she needs a tutor to come to the house on a daily basis (or they can meet at the local library in a conference room or at school in the tutor's office if need be).

The ADA provides that the school board is REQUIRED to make "reasonable accomodations" for your child. My friend with the highly gifted child had to have a special tutor until he reached high school simply because he was not challenged and his counselor stated that it was a negative effect on his development to hold him back.
They provided a tutor that came to their home three days a week after school. I also had a tutor come to our home every day during the summer when my daughter was being moved from first to third grade - to make sure she was ready, and to prepare her for anything she may have missed. Both of these tutors were at the school board's cost.

You do have the issue of your daughter being 18, however, depending on your state, local municipality and school board, that may not matter - you may not need to get any type of legal custodial arrangement simply because she is still in school and that may not effect the school board.

I do not know where you live, but you should check with your local Bar Association or if there is a law school in your area call them and ask either of these if they have a Pro Bono service, free legal aide or Lawyer assistance at reduced rates. You may be able to get an attorney to help you run the gauntlett of the school board.

Either way - you can do this on your own - ask the school counselor or call the school board and find out who at the school board handles "special services for students" - make an appointment and camp out at their office until you get what you want. *you can always threaten to go to the newspaper - "local student denied school services because of brain injury. They don't want THAT published.

It would seem to me, a parent of 3 teenagers, that part of her anxiety, is the fear of goiing back, failing, being "that girl" , etc. If you can get her set up in a program over the summer, and get her back into the groove, maybe the two classes a day will be the way to go in the fall - and if not, then maybe she needs the tutor through summer and fall to get her through her courses so she can take the GED.

Then she can think about community college, or a work/study program/ or whatever seems best for her at that time. Regardless, you pay for the public school system, make them work for you.

Best of Luck

GatorGirl '83

Have you contacted a rehabilitation group like NeuroRestorative? My granddaughter is presently receiving treatment there. They have locations across the country and I have been very impressed. It is a residential facility and they are observed 24 hours a day. They have a high staff to patient ratio. They also gear the treatment to each patient. So what may be good for my granddaughter might not be what yours needs. I know that Neuro treats adolescents until they are 21. I don't know if this will be an option for you, but it would be worth checking into.