Mark & Mrs. D - thank you for your input.

Danielle takes Focalin 5 mg XR to help focus when she studies. She says it is hard to keep her focus. It isn't like it was before her accident when she could decide to focus and stay with the subject at hand. She says her mind jumps around and it never use to. We tried to increase it to 10 m.g. but she said that made her jumpy.

She takes Clorazepate 3.75 mg. an anti-seizure medication or also it used as an anti-anxiety. She has no anxiety maybe her brain does but she does not exhibit any visible fear or worry or voice any fears or concerns. She is always happy and having a good day when these events occur. She takes it less than 1 x per week. Only when she gets a headache that she feels is going into the seizure-like symptoms she will ask to take it. It usually will turn the situation around in 20 to 40 minutes and she will get up and seem fine. But recently Sept. 27th she woke with a throbbing headache at 9 a.m. which was unusual and only happened when she was trying to stay in school. At 1 p.m. she still had the headache and so she took the med and it she didn't recover and took it again at 5 p.m and still didn't feel better and then had the seizure-like symptoms (not speaking and then shaking) at 9 p.m.

She also has taken it so she can participate in events that are going to be very noisy. It has worked several times and she can stay and enjoy herself instead of leaving in 30 minutes with a bad headache. But she will suffer for 3 to 5 days afterwards with headaches, blurred vision, dizziness... and not be able to do her school work. We have carefully chosen the events to use it for.

They have not officially put her on a the more typical seizure meds because her 1 hour and 24 hour EEG were normal and they need some analytical data. Even though I carefully documented the 8 events she had in the last 20 months. I documented what she did the entire day before it started and listed the symptoms she exhibited carefully. Both before and after. She does not remember the events and she is very tired afterwards as well as the 3 to 5 days of headaches, blurred vision, dizziness.... Recently, she was sent to Cornell Medical Center in NY and they would like to do a 48 hour in hospital EEG but she would be in bed and it is not likely she would have an event. I could stress her the few days prior and then while she is in bed have her read and watch video games that flash or travel documentaries where they pan the camera all of which would cause her headaches. And they would try to keep her up as much as possible. All this would definitely give her 5 to 10 days of persistent headaches and bad days afterwards but I can't be sure we would create a seizure. I just don't feel great about doing this to her to maybe catch the activity on the EEG. So she can go on medication that will have additional side effects. It is a very difficult decision either way.

Also the event she had on August 7th 2009 was the worst and then she had one on Sept 27th. She has been much more symptomatic since the August one. I really think it hurt her brain. So how can I purposely try to get her to exhibit this when all I do every day is try to avoid headaches so she can do her school work consistently. I do have a prescription from the NY doctor to get a blood test within one hour of the seizure to check her Prolactin level. That will be interesting all of these events occurred between 5 p.m. and 10 p.m. and we'd have to go to the emergency room. If you don't arrive in an ambulance the usual wait is about 3 hours. Even if you come in an ambulance you get a bed and looked at but to get a bloodwork tech immediately ?? well I'm going to the ER in the morning to see if they think they can respond to that request. It could be weeks or months before we get that opportunity. So that is where we are as far as the seizures. Her neurologist who sent her to NY said he thinks they might be Partial Complex Seizures but no formal diagnosis.

I would like to find a qualified nutritionist that could prescribe the BRAIN food whether vitamin or minerals or foods that could help her brain heal or function better. Any ideas on that one? I will look into the fish oil I always heard it was good.

Linda

Linda,

I recently read about a concern that the decompensations (relapses) that brain injured have from time to time may be undoing the prior healing. If Danielle is messed up for 3 to 5 days after enduring these events she selectively attends, she may be undoing things.

I wish I could locate the article. They talked about working to prevent seizures and decompensations as important to enable improvements to be long term. This is the reason many brain injury patients are but on anti-seizure meds in the ER before seizures are evident.

I have been on Neurontin (gabapentin) for years. It is a very easily tolerated anti-seizure med. Side effects are virtually nil. It helps my brain settle down inside. My new doctor was glad to see that I had been switched from clorazepam (Klonopin) to Neurontin. She says the benzos can cause cognitive, especially memory problems with long term use. She said that Neurontin is much easier on the injured brain compared to benzos (Clorazepate is a long acting benzodiazepine drug).

Personally, I know that when I made major changes to avoid the many decomps that I was experiencing, my condition somewhat stabilized. I would attend a noisy function, usually church, and decomp for the afternoon. I would sleep it off but still need a few days to a week to recover.

Church was a big cause of decomps. It was the noise and echoes in the auditorium that overwhelmed me, even with ear plugs. There were very few who could hear the echos I heard. Most people have echos filtered out by a properly working brain. I was only there to hear the sermon. I had stopped being in the auditorium for music years ago. I finally stopped attending service at church. Now I just go to Sunday school and work in the nursery.

You could almost say that I have become a bit paranoid of causing a decomp because it feels so much better to be free of them.

Does Danielle take any vitamins yet? There are basic things that you should be doing without a nutritionist to fine tune things.

200-400 mgs of B-6
200-400 mcg of B-12
500-100mcg of folate
50mcg of Vit K
200-400IU if Vit E
100mg of C
1000 to 2000 mg or more of D3
2500 IU of A
a good mix of the trace elements, Nickel, manganese, molybdenum,zinc, selenium, iodine, boron, chromium, chloride, biotin, lutein, lycopene
200 mgs or more of Niacin, extended release will help with the flush
good fish oil, EPA & DHA

Some say CoQ 10 too.

And, again, avoid the excito-toxins, MSG, aspartame, caffeine. The term excito-toxin means they excite the cells to the point of damage or death. A scary concept when I finally understood it.

I seriously doubt any neurologist would be concerned about her taking a good vitamin regimen like I listed. I take more than I listed but I'm 180 pounds.

Her hormones should be looked at. DHEA, and the girl hormones.
I think you said her Thyroid is good.

Has her doctor mentioned anything about the symptoms being more extreme during the teen maturing years? Common understanding is that many symptoms will lessen as the patient gets past these maturing years. My doc told me that in 1971 and I still see it in the current literature.

Give her a hug for me and tell her there is a grandpa type in Idaho thinking about her.

Linda,

I'm sorry to hear about your daughter's experiences with neurofeedback. Like any treatment, it is only as good as the person administering it. If you get to a point with her where none of the medication is working, I would encourage you to look into it again. It was actually first used( and studied) to treat seizures and epilepsy, so it may be beneficial for her in that area.

Mark,

Thank you again, your church experience is exactly like Danielle's. She skips the worship stays in the outer area and then goes downstairs to help in the very small nursery class during the message. Our church is very small and there is no other kids her age for Sunday School if there were it would be too noisy anyway.

I'm so frustrated right now because there doesn't seem to be one doctor who understands and knows head injury's and what best to do to help her recover. There has to be a better answer than just coping for the rest of her life and trying this and then that and then guessing. I've seen three neurologist's recently and none of them really have a definitive answer. Since this is so prevalent why is there not a brain injury recovery center in every state even in every county. One that has a comprehensive plan of cognitive and physical exercises, vitamin and mineral supplements that help the brain recovery even the best foods to eat and avoid as you have so helpfully told us (i.e. MSG). Are they really that brain dead??? It does make me wonder who really has the brain injury?? How about medications that are safe and have no side effects which complicate life and potentially cause more problems and add to the symptoms that they are already coping with.

Danielle appreciated you good wishes from her Grandpa in Idaho and she says "Hi".

Linda

I hear you Linda!

Brain injury does not receive the public attention, research and funding it warrants. Not to minimize AIDs or any other high profile condition, but it's head injury that is the number one killer and disabler of Canadians under 44. In fact, every four minutes another Canadian suffers a concussion. Yet, even in our not-for-profit system, only 1 in 20 will ever get the rehabilitative services they need. This is an outrage!

Why is this so?

Firstly, the brain is complex so our condition is complex, frustrating and little understood. However, this will never change without significant research and effort.

Secondly, we are expensive patients. Our therapies are costly and, to the outsider, don't seem to yield dramatic enough improvements to justify the expenditure. Doctors would rather pat us on the head (gingerly) and send us on our way.

Thirdly, as a population, we face huge hurdles in fighting against medical indifference. Our injuries often erode our communication skills and organizational abilities. Lack of energy and initiative makes it difficult for us to mount a sustained campaign. Turning to others for help is surprisingly ineffective: the neurological specialty seems to attract the most arrogant and uncaring people. Hiring a PR firm to carry our message is out of the question. The injury erodes our job prospects to the point that 41% of Canadians living in the community with a TBI struggle below the poverty line compared to 26% of Canadians with other disabilities.

What can we do?

Our local brain injury association continues to lobby for funding and to try to educate family doctors about brain injury. As these efforts are producing few results, we concentrate most of our energy on prevention. Afterall, once you've got an injury, we figure you're basically screwed.

Maybe we need a celebrity spokesperson? Any suggestions? Who's big? George Clooney? Hugh Laurie?

I just did a cursory search into Federal spending.

The Feds spend $15 billion for HIV/AIDS and there are 1.1 million with HIV/AIDS. That is $150 per HIV/AIDS patient.

That same government spends about $25 million on brain injury. There are over 5 million who are disabled due to a brain injury. That is $5 per disabled patient.

In Idaho, the grant for the PAPBI advocate is $50,000. I would estimate we have 25 to 50,000 disabled due to brain injury. That is just $1 to $2 per patient.

HIV/AIDS is a disease that is directly connected to behavior. Very few of the TBI population are related to the patient's behavior.

What is wrong with this picture?

I am not advocating the government can solve our problems. But the money says scads about how our community is overlooked.

Maybe we need a celebrity spokesperson? Any suggestions? Who's big? George Clooney? Hugh Laurie?[/QUOTE]

Hi,

Yes I do Bob Woodruff the ABC news correspondent who suffered a brain injury while in Iraq. He started a foundation remind.org I saw his article in Parade Magazine, July 12, 2009 titled "Can Brains Be Saved?" - maybe you can view it at parade.com. Let me know if you find anything useful. I'm still a bit overwhelmed dealing with the day-to-day symptoms and trying to home school my daughter.

Thanks for your response!!!
Linda

Linda,

Cudos to you for your efforts to home school Danielle. It can be quite a task.

My wife home schooled our kids after we pulled them from a private school that was failing us.

There is a book, rather old, called "Teaching Tips and Techniques" that may be of help as you try to understand how to best meet Danielle's needs. It is still available on Amazon at
http://www.amazon.com/s/ref=nb_ss?ur...niques&x=0&y=0

Our older daughter struggled with academics and TT&T helped my wife understand some of her struggles.

btw, When we pulled our kids out of private school, our older daughter was doing 2nd grade work but was in the 4th grade. Her year in 'special ed ' as a first grader did not get her up to speed. My wife had her at grade level within 6 months. At 16, she took the California High School Proficiency Exam, passed, and graduated a year early. This meant she was equal to the top 50% of graduating seniors, not at the minimum level like the GED requires.

In the Army, she became a Surgical Technician and later a Combat Medic. She graduated Surg Tech school at the top of her class and interned in Hawaii. She later completed her Combat Medic training and passed her national certification with only two weeks of training and study. She only took the Combat Medic "refresher" course, not the 21 week full course. She was often selected to be the General's medic in Iraq when he went outside the "Wire". She made Sargent and then Staff Sargent at the earliest date.

All this to say that with a proper understanding of how a student learns best, they can accomplish anything. Your ability to focus on her learning strengths can overcome her learning weaknesses.

My daughter learned that she needs a distraction free learning environment. If she is in a classroom, she sits up front where there are no other students' heads to move about and voices to distract her.

Again, I commend you.

My best to you and Danielle. Give her a hug for me.

btw, My wife never finished Junior College. Studies show that education level has no bearing on the success of a home schooling mom.

Hi,

I am thinking about the qEEG-guided neuro-feedback with Dr. Walker in TX for my daughter.

What do you know about it? Have you tried it? Did it help?

Linda (mom) in CT