[FrustratedMomma]

Input needed please....! I requested a referral from the Dr my son has been seeing since 09/30/11 to a neuropsychiatrist. When I got on the phone with the referred Dr.'s office, I found out the Dr. is actually a sport and performance neuropsychologist. After many questions to the front desk, the gal connected me with the Dr himself. I spent 15 min on the phone with him. I told him that I thought my son actually needed a neuropsychiatrist, as his injury/recovery is not sports related, and many medical issues seem to be involved. I said that I really didn't want to waste our or his time by starting with him if he was just going to need to refer us elsewhere. He told me that there really is no such thing as a neuropsychiatrist (??!!). He said that the neuropsychologists, like himself, would do a very time-consuming, detailed assessment, which is what is needed to find out where his issues are exactly. He said there really isn't a 'one-stop' fit. If an EEG and/or meds are needed, he would refer to a neurologist. If behavioral management needed, he would refer to a psychiatrist. Is this right?? My gut tells me that this Dr. is not the solution for him.

[Mark in Idaho]

frustrated,

See my reply on your other thread "PCS wreaks havoc... ."

[MommaH4]

It has been my experience that there is no one stop help for head injuries. Our neuropsychologist helped us a lot after the assessment, guiding us where to go. But I personally got the most help out of the Texas Department of Rehab. Of course my son is older but you might what to check out what ever your state has...it takes a lot of research but there are facilities and programs out there that deal strictly with head injuries. If you can find something like that they would be able to help guide you to all the right doctors.
My son is just now finishing up a four month stay at a transitional living facility for people with TBI's. It has done him a world of good! He took classes on budgeting, cooking, cleaning, interview skills, how to read body language and how to portray the correct body language, how to make a grocery list, among many other daily living skills. He also had a regular Dr, nurse and counselor. Someone to help him deal with the red tape of government programs and a case worker to over see all of the above. They also taught him a lot about his brain injury, which I think really helped.
Good luck!! And stay strong!! =)

[Mark in Idaho]

Good for your son. I have a cousin who has received some good help in Texas after being released from the neuro rehab center where Gabby Giffords was. Sounds like the system they have here in Idaho. It is oriented toward getting the patient into the work force and living independently. The Idaho system does not have a resident program available to most PCS patients. It is primarily done on an out-patient basis except for the severely injured/disabled. It is under the Idaho Department of Labor Vocational Rehabilitation Program. I was assessed and they determined that they could not offer me any assistance.

The problem many of these programs have is the cut off point for funding. They also are often oriented toward patients who are 18 or older and thus do not have parents who are obligated to be the primary means of support.

The states that have Brain Injury Trust Funds have more of these programs.

It sounds like your son had some serious limitations.
What kind of head injury did he suffer? simple concussion or coma?
How old is he?
How is he doing now?

[MommaH4]

Originally Posted by Mark in Idaho

Good for your son. I have a cousin who has received some good help in Texas after being released from the neuro rehab center where Gabby Giffords was. Sounds like the system they have here in Idaho. It is oriented toward getting the patient into the work force and living independently. The Idaho system does not have a resident program available to most PCS patients. It is primarily done on an out-patient basis except for the severely injured/disabled. It is under the Idaho Department of Labor Vocational Rehabilitation Program. I was assessed and they determined that they could not offer me any assistance.

The problem many of these programs have is the cut off point for funding. They also are often oriented toward patients who are 18 or older and thus do not have parents who are obligated to be the primary means of support.

The states that have Brain Injury Trust Funds have more of these programs.

It sounds like your son had some serious limitations.
What kind of head injury did he suffer? simple concussion or coma?
How old is he?
How is he doing now?

Mark, I believe my son to be a complex case...not that I think there is a simple case. Alex was diagnosed ADD as a child and has mild Tourette's, ticking only when stressed or when medicated with stimulants for the ADD. As a young teen he suffered at least 3 concussions due to motorcross. At 18 he fell asleep at the wheel in his 1998 Chevy 1/2 ton, resulting in a head on collision with an oak tree at 65 mph. The airbag shattered his forehead. Alex never loss conciseness that night and his Glasglow (sp?) score was good. By morning the Doctors had done surgery to repair what they could...he then was in a drug induced coma for 24 hours...ICU for 5 days, acute therapy rehab @ Baylor Dallas for 10 days...then out patient rehab for 2 months.
At that point we all really thought all was well and he was back 100%...not the case. I really wish I did know/ know (now) all his symptoms...but being a stubborn teenage boy (he's 19 now), who has always fought that he is "normal", he doesn't tell me things until or unless its a BIG problem. For instance, for months he was having full blown panic attacks and never said anything. He wasn't living at home so I just didn't know. He also lied to me for months about having a job. Truth is he hasn't been able to hold a job longer than a week. It wasn't until he was in the "transitional living" rehab that I learned that he wasn't sleeping and that he was "ticking" on a regular basis. Other things that I've noticed are the anger issues, depression, word placement...but he doesn't really talk to me about it.
The rehab has done wonders for him...he is doing great!! My biggest worry is that it has been a very structured environment with lots of knowledgeable people to support him and soon he will be coming home...to a less structured environment and me.
Guess I'm scared that I will fail him. I just have to keep reminding myself that God has a plan...a plan that I can't mess up!!!

[Mark in Idaho]

Momma,

Do you think you are powerful enough to mess up God's plan?

I suggest you spend some time with the rehab people to understand the kind of structure your son needs. Recent research has learned that TBI subjects do quite well with electronic devices to help them maintain schedules and properly accomplish needed tasks and ADL's. It may help if he is introduced to a smart phone or other PDA device while at the transitional rehab center.

You can set up smart phones to be able to notify you of his location, etc. Have you though of applying for temporary guardianship/conservatorship until he can prove himself?

Has his neuro tried any anti-seizure drugs to see if they stabilize his ADD better than stimulants. I was on phenobarb as a teen and it did a good job of settling me down. The phenobarb was for absence seizures but it also smoothed out my day. Not as intense as I was previously.

Has anybody suggested that he might benefit from looking into vocational opportunities where he works alone on projects, especially projects that require manual work? I bet he has some schizoid tendencies (a loner due to struggles to understand others) Maybe a motorcycle mechanic or some such job where he earns his pay by piecework or commission?? The ability to do the job at the speed he needs to do it at can be worthwhile.

I do not work well under time pressures. If I set my own pace I can get tasks done well and sometimes quickly. If someone else sets the pace, I stress out and crash. I would not be surprised if he has similar issues.

I do best with hands-on jobs. My hands set the pace which is always slower than my brain's limits. Jobs that require lots of verbal interaction are a lot tougher for me.

Have you read the TBI Survival Guide? It is at www.tbiguide.com It is a great resource for yourself and anybody who needs to work with your son who does not understand TBI.

You may have some challenges ahead but nothing more than God will choose for you to endure.

When you think you are starting to mess up God's plan, just back off and Be Still or Cease Striving (Psalms 46:10) and let God work.

If you ever want to discuss things privately, you can post to my profile page and I can email you back. You will not have PM or email privileges until you have posted a minimum number of posts. I don't know how many that is. You also need to enable PM's and email in your profile settings.

My best to you.