Hi David,

I sent you a private message awhile back via this site. Did you ever receive it?

Thanks.
Don

Hi,
My daughter, age 15, has PCS symptoms including non-epileptic seizures. I have recently heard of Dr. Daniel Amen's work with SPECT scans to help pin-point the injured areas of the brain in order to more effectively treat the symptoms. Has anyone had successful treatment with this "cutting edge technology"?
Linda (Mom) in CT

Hi Linda,

I'm glad to see that you are actively seeking treatment for your daughter. Dr. Amen's work with SPECT scans is quit remarkable; however, getting a QEEG will tell you basically the same thing at a much cheaper price. I have also heard that lately the docs in his office use the SPECT scan to mainly prescribe medication like ritalin and anti depressents. There are some studies that have shown that both of these can be detrimental to recovery. So you may want to make sure you ask them what their therapies are after they do the SPECT.

Instead of SPECT scans, you should look into hormone and neurofeedback therapy. A lot of research has come out just in the last two years regarding the use of progesterone to heal and restore function in brains. The sooner the better with this therapy, so you may want to get her into a doctor right away. A lot of docs are not aware of this new therapy, so I would suggest googleing it and taking a research article into your doctor. There are studies also being done all across the country so you may even have a university near you that is doing the study that you could enroll her in. Neurofeedback has been used for years as a treatment for brain injuries. Also make sure that she eats lots of protein or take a branched chain amino acid supplement. She also needs to ensure she is getting all of her vitamins and minerals. She needs to drink a lot of water during the day as well.

Hope this helps. Don't be afraid to ask more questions b/c a lot of people on here are very knowledgable and willing to help.

Good Luck.

Thank you for your reply, but its been 2 years this January. I can't find the answer. I need a doctor who knows the answer. I've tried everything I felt would help and no one seems to know what to do. We've done the rest and wait. She did 40 treatments of HBO. We tried Bio-feedback - it gave her headaches. She homeschools so the environment is quiet but she still has headaches from concentrating & reading. When her brain gets overloaded she has had 9 non-epileptic seizures - which they are trying to tell me that are happening because she is anxious. She doesn't appear to have any anxiety especially when they happen. She is usually doing something where she is having fun or relaxed. They say it is anxiety that she is not aware of and want her in therapy to convince her that she doesn't know her own feelings. They want her on anti-depressants (low dose) and migraine medication. Although her headaches are not severe but they do stop her from continuing activities like school work or having fun. She needs to be in a quiet dark place. If they get bad they go to the seizures. She only has had 9 in 23 months. I would love a doctor who knows how to treat this with diet, exercise and supplements to support the brain functions. I have not wanted her on anti-depressants because of the side-effects and the fact that they don't usually heal but just add side-effects and maybe work for a short time and they you have to add more or change them. I thought Dr. Amen knew what he was doing but it doesn't sound like it. I'm tired and feeling hopeless to find help for her - I can't keep guessing. I need someone who knows what to do. Please help me. What is a QEEG? She just had an in hospital video-taped EEG which told us that her seizures are non-epileptic. Oh, and they also blame me for them because I'm over protective.

Hi,

I just remember that someone suggested to me that Tai Chi might be good activity. Not too taxing for your heart rate. I'm going to look into it for my daughter who is 15 and has PCS.

Linda

Hi Linda,

Wow, it sounds like you have done a lot of digging for your daughter on possible treatments. As they say in the Southern Hemisphere, Good on ya for doing so.

I would encourage you again to look into neurofeedback. Neurofeedback is a sub specialty of biofeedback that directly trains the brain to operate more efficiently. Some people get it confused with biofeedback which trains muscles to relax, and the two are distinct from each other. Scientists really don't know what is happening physiologically when someone does neurofeedback, but with the discovery of neuroplasticity and stem cells, some scientists are speculating that it aids the brain in repairing damaged tissue.

I would specifically suggest finding a therapist who does LENS neurofeedback and/or Z score training. These are the latest and most advanced forms of neurofeedback available. The LENS is currently being investigated as a treatment in VA hospitals for Iraq war veterans who have sustained head injuries, and Z score training has been producing remarkable results thus far for head injuries.

I would also encourage you to get a full blood panel done on her if you haven't done so already. You guys need to ensure none of her hormones are out of whack and that she is getting all of her proper nutrients absorbed in her GI tract. And again, look into progesterone treatment.

One thing to keep in mind while undergoing treatment is that it isn't going to be easy for your daughter. Her brain has now become very dis-regulated and it is going to take a lot to get it back into a regulated state. So, patience with these different therapies is definitely needed.

Hope this helps and my apologies for belaboring neurofeedback.

Hi Linda,

My heart goes out to you and your daughter as you struggle to find hope during these trying times. Going through the suffering is bad enough, but the uncertainty is even worse. I just want you to know that I'll be praying for both of you.

I just hit my one year anniversary of PCS and am facing similar struggles as your daughter. I also have looked at the Amen Clinic as a possibility for me and am curious to know if anyone else out there has any first-hand experience (good or bad) with that clinic.

Although your daughter as struggled with PCS for two years, I had a very positive thought that I'd like to share with you. Since she is only 15 years old, her brain is still developing and therefore, she has a better chance of recovery than someone of an older age. God created our brains with an amazing ability to repair themselves and reroute neural pathways when needed. Please keep this in mind for your daughter and I think it will give you hope!

Also, I admire you for your heroic efforts to help your daughter. She is blessed to have a mom like you who is doing all she can to help her.

God Bless!

Don