new to site - neurofeedback and PCS
 

Hi all, my name is Katy and I've recently discovered this site and have read many of your stories. Thank you all for sharing! I can't believe how many people are suffering for years with post concussion issues! My 13 year old son, Danny, (youngest of 4 children) had a concussion last April after falling in the cafeteria and hitting the back of his head. He has had everyday headaches since. He is not attending school right now and his headaches are in the severe range (8, 9 and 10 on the scale). We have a homebound tutor who has been able to come about 5 times before Christmas, but Danny would always feel worse when trying to concentrate on school work. In addition to taking Vitamin D, Magnesium, Vitamin B2 and B complex, and fish oil, we have tried cranial sacral therapy, acupuncture, atlas orthogonal chiropractor therapy, a gluten free diet, biofeedback, relaxation therapy and meditation, and a range of medications from the neurologist such as amitriptyline, relpax, migrainal, zomig, mobic and vistriol. He is currently taking 100 mg of Topomax and we just started a 3 week course of prednisone. The doctor wanted him to do Botox, and we had gotten approval for it, but Danny refuses to try it. He had a spinal tap on Monday and his CSF pressure was normal and we are waiting on the rest of the results. We have recently been seeing a therapist, but I'm not sure if the therapist is for me or for Danny! He has been very helpful for us as a family, but I don't think he is going to help stop the headaches. The doctor said that after this the next step would be to get into the Michigan Headache Neurological Institute, a multidisciplinary hospital in Ann Arbor that offers a comprehensive workup as an inpatient for up to 2 weeks. The chiropractor wants him to go to Albany for an upright MRI (we had a recumbent MRI which was normal according to the neurologist - but the chiropractor disagrees).

I have been reading about neurofeedback and wonder if anyone has tried it, and/or know anything about the Brain Wellness Biofeedback and Wellness Center of Washington DC?

Please post if you have any information that might help us decide our next course of action. I apologize for all of the information at once. I'm sure I've left some things out. I am overwhelmed and scared! Danny is sick of taking medications and vitamins and seeing doctors! Thanks all! Katy

I think you should ask your Dr.'s what they think about neurofeedback before you try to provide it for your son.

In my opinion, it could cause more damage than good. It's not an exact science and I believe the practitioners may believe that they are helping patients but they are truthfully just profiting off the fears and desperation of people who have suffered tbi's who are impatient to get better faster or who feel like all hope is lost.

He is so young, neurofeedback makes me nervous for an adult - but for a child it downright scares me!

I think it should be reserved for a last ditch effort and you still have lots of avenues to try before trying that.

It sounds like your Dr.'s are doing everything that they can - especially if his next step is heading to a neurological headache institute. That sounds like a great thing where experts with the most up to date research will be able to help your son.

I know from personal experience that it's very difficult to be in severe pain and wait for a concussion to "get better" in it's own time and I can't imagine what it must be like for a mother to watch her son go through excruciating pain, but hang in there, because it sounds like he's in good hands and that the situation is being taken seriously.

Has anyone really taken a look at his neck? Has he been given any MRI's of his neck? Has a neurosurgeon taken a look at them?

Many neck injuries are being proven to cause PCS symptoms including headaches.

Our necks try their best to help protect our skulls when they are traumatized, but often our necks aren't strong enough to do so and they can become injured themselves in the process.

I think it's worth asking for in addition to going to this institute they are sending him to.

He may not need any surgery, but only some physical therapy to get him on the right track to wellness. :)

Doing a quick google search for "Ann Arbor Concussion Specialist" I found that the University of Michigan has a Sports Concussion Speciality Department... have you contacted anyone over there for a referral for a pediatrics specialist for concussion? They may be a good resource for you to touch base with for a referral.

Before going with a random "practitioner" who performs neurofeedback, I would seek out researchers and experts in the field who are bonafide MD's and PHD's with experience treating children recovering from concussions.

I also found a concussion clinic in the detroit area:

http://www.henryford.com/body.cfm?id=40876

I'm glad you have tried so many things! I did the same when trying to recover from the concussion I sustained too before I figured out what worked for me.

You are clearly very motivated and resourceful, just hang in there and it'll work out. (((hug)))

I think he should continue to take the supplements until he's much better and maybe for the rest of his life anyway... they will help in an ongoing capacity that may not be apparently detectable.

Thank you, Esthersdoll, for your thoughtful response. I will do some more research on neurofeedback. From the testimonials I've read, it sounds so positive. A mom wrote about her 10 year old daughter's recovery after 9 visits at the Biofeedback Wellness Center outside of Washington DC. She's completely cured from her concussion. And there are many others. My neurologist here in Connecticut recommended biofeedback and I'm not sure how different neurofeedback is. We do not live in Michigan, but our doctor told us that the Michigan Headache Neurological Institute is the only one of it's kind, so I am very interested. We will see how he does on the prednisone. Thanks again!

Biofeedback and Neurofeedback have two completely different protocols. Volitional neurofeedback is much safer than non-volitional neurotherapies. Non-volitional use sound, light, magnetic and electric pulses to try to trigger the brain into new waveforms. This can be problematic. Volitional neurofeedback requires the subject to make conscious thoughts to try to redirect how the brain functions. It is much safer.

Dr Walker in Dallas has had success with his protocols. In fact, a mom from CT took her daughter to Dr Walker for treatment and had positive but not complete recovery results. Her daughter had many treatments over a long period.

I agree with your chiro about upper neck issues and the need to look deeply into such a possibility. The Botox is worth considering. Does he have any tenderness at the bony parts behind his ears ? This could be treated with Botox, at least for the short term. Has he been checked for a TMJ disorder caused by the fall ?

How about larger doses of Omega 3 fish oil ? Is he taking B-12 or B-2 ?

I'm from CT (Naugatuck). What part are you in ?

13 years old is a challenging time for such an injury because the brain is rapidly maturing and hormones are changing.

btw, I think we have a member who tried the DC Neurofeedback center without much success.

My best to you both.

pediatric concussion specialist
 

I have a coworker whos son is seeing a specialist at MCV in Richmond Va. His son suffered a severe concussion two years ago. If you are interested I will get the contact info and forward it to you. BTW he reports very positive results and has told me this Dr is way ahead of the curve.

Thanks, Mark. He is taking B-2, not B12, just a B complex. And yes, I'm going to try to give him more fish oil. We live in Wilton, btw. I figured you live in Idaho! Since your reply I've read so much more about neurofeedback and it's adverse side effects that I'm starting to understand it. Thank you for explaining the difference between volitional and non volitional.

Thank you, that would be great. Any information at all is always helpful. I'd like to hear more about your coworker's son's story. Best, Katy

Katy,

He should be taking B-12 also. The Methylcobalamin form of B-12 is best. It provides good support for nerve tissue. The amount in a B-complex is not enough.

My best to you both.

I wll PM you info. Friends son was injured playing football. Classic mtbi, but despite the common difficulties he is coping extremely well. Key here is coping. All to often life is different after mtbi it is a matter of accepting and learning coping skills to increase your quality of life.

Sent you a email to the Dr in Richmond. Good luck.

Answeer about Clinic in DC.
 

I went on the various listserver and this is what I found
This is the center of Dr. Mary Esty well known in the LENS community. She is a very competent and talented clinician.

Hope this helps.

Dr. Diane

Katy, LENS NeuroTherapy is a non-volitional treatment. Many on NT have had negative experiences with LENS.

It is not approved for treating mTBI. It is only approved as a relaxation therapy. Promoting it for treatment of mTBI is against the law.

My best to you.

Concussion Clinic
 

Dannysmom,

I did a google search and there is a clinic that specializes in concussions in Southport, maybe they would be a good place to start for another opinion.
My concussion doctor neuropsycologist that does a computer "Impact" testing and makes sure that I am seeing the appropriate doctors to ensure my continued improvement. Right now my "team" consists of 4 additional doctors and I had a vision and physical theripist too, but just completed those programs or as far as they figured they could get me. Just a thought.

Good luck in any case, it is all frustrating and takes a lot of time.
Laura

LauraM,

What are all the doctors doing to help with your recovery ?

Many concussion clinics are just modified sports medicine clinics with a doctor who has taken the weekend seminar classes for using ImPACT and other Computerized NeuroCognitive Testing Systems. The focus is to reduce school liability regarding Return to Play decisions. It does not make them specialists. Many are very good at generating fees for their clinics with excessive diagnostics and therapies.

I have a Physical Medicine Doctor, He takes care of the headaches and ensures the medicines I take will not interfere with my lupus and thyroid medicines.
He has gone through several combinations of medicines trying to find
a combination that wont make me ill and still help my headaches.

I have a neurologist - not the one I started out with, this changed too mine got sick and quit seeing patients. She I just watching over me right now.

I have my eye doctor and eye therapist - This one I changed from who they
recomended to one of my choice, closer to home and one that did not
cater to kids with learning disabilities. I had 35 sessions of eye therapy for convergance issues. That is better, I still have problems focusing after
reading. I was told that will probably never get better and it was most likely my age and not the concussion. After reading I see words double at a distance for about fifteen minutes.

I have my family doctor. She Keeps up with has been going on and will listen to any additional concerns I have. I am currently in PT again for my shoulder when I can get out of bed to go.

Now I have the ear doc/neurologist this is new........yet to see what he will do. For now it is just medicine. It is my understanding this could lead to mor therapy or surgary later or not. Again that day I was too sick to ask questions, but have a follow up appointment soon and will see if the .25 mg of Klonapin twice a day helps.

and my Physical Therapist she is my biggest cheer leader, even though I am done seeing her, she will email me and keep up to date with my progress.


Keep in mind too I also have a rheumatologist,for my lupus and a gastro doctor for my elevated liver enzymes and acid reflux.

I am lucky enough to have in Pittsburgh a large group of doctors and many specialty hospitals in one large group. Most of my doctors are in that group and at a glance they all can see my full history and what each of them are doing. Sometimes I agree and do not think it is enough. Other times I think
Maybe there is just no way to make it happen any faster. It has been just over a year for me.