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

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

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.

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.