Hi Linda,
I am so sorry to hear about your daughter. The good news is that she is young and that does help recovery.
Have you tried just a straight EEG?
I am from the UK and awareness of PCS seems to be a lot lower here than in the States, and the facilities seem to be worse. I couldn't get a QEEG done under our health system, but I did manage to get a EEG. The QEEG does a spectral analysis of inputs and separates delta, theta, beta and alpha waves. With the EEG you just get a trace from the various points where electrodes are put on your head. However, even with just the EEG slowing of brain waves, ie an abnormal proponderance of delta or theta waves can be detected. After a lot of persuasion I managed to get them to show my the traces and you could clearly see strong waves at about 5 Hz. That means that in each division of one second you can see 5 peaks and troughs. This is generally reconned to be an abnormal trace and someone experienced in looking at an EEG would be able to comment on it for you.
The bad news is that they might not want to tell you that it is abnormal because they don't know how to treat it.
However, I think that it is still a good idea to know then you can see if there are any improvements over time if you get an EEG done again.
In my own case, there has been an improvement from year 1 to year 2 and also a decrease in symptoms, although sadly they have not gone.
Best of luck,
CS
I was not able to get a
Quote:
Originally Posted by Linda (Mom) in CT
Hi Kate,
My daughter is at 23 months and her neuro is now calling her a psych patient simply because she did not recover from her PCS. They told us in the beginning that there is no treatment. She has done the rest and reduced stress. I don't know if I'm more angry or more scared for her. Sorry about the bad news but I wanted you to be prepared for that diagnosis.
My understanding now is that neurologists and others do not have a clue about PCS so it is put in a box of psych case if the patient does not recover over time. It makes no sense. It is so thoughtless on their part and believe me they see you for 20 minutes and you leave they never think about you or how to help you when you are gone. They have already decided.
I almost took her to UB when she was at 6 mos but it was 10 hours from us and that just seemed at the time would put more stress on her. Although it was a hard decision. If it is close for you and your insurance covers, go for it. But take it slow because as you say doing too much can aggrevate your symptoms. I don't know if aggrevation causes more brain damage or slows your recovery. Although I don't see any recovery in my daughter - I think she her PCS is worse because of her recent non-epileptic seizures. She is much more symptomatic. They are calling these seizures emotional even though they are CLEARLY (as I have documented) a result of her exposure to the same triggers that causes her PCS symptoms - noise, concentrating, reading, light changes and physical activity.
I am looking into Daniel Amen, MD, a neuroscientist, who uses SPEC scan to determine areas damaged and then tries to correctly match the meds to that.
Also, Dr. Walker, a neurologist, in TX who uses qEEG to determine the processing speeds in different areas of the brain that are too slow or too fast. Then he uses qEEG guided neurofeedback to restore the speeds to normal.
Also, I'm trying to find a nutritionist who has a clue about healing the brain with minerals or supplements. Any suggestions?
Also, someone has said that hormones levels can be affected from the brain's being injured. It makes sense it was shaken up and it is the control center of the brain. Any info on that?
Visit brain injury law group or gordon johnson attorney - he seems to understand and explain how the medical field views this and insurance companies try to get out of covering you. But I found no suggestions for help. He has been representing head injury clients for years. I would hope some of his clients found help - so I sent him an e-mail to ask if his clients found a doctor that could help them. All I want is for her to get her life back.
How is the Wii working for you? My daughter wants to get it but I'm concerned about her using it. I know that physical activity can make her worse. She can't even walk the dog very far without getting a headache. She tried it at a friends house and it did cause her to get a bad headache and have several bad days after that. But the balance and yoga maybe that would not be too bad.
I'm very discouraged and feel helpless because no one will listen. I wish I could find a doctor who would fight to get her her life back. No one really cares and understands. She is only 15. -- Why only 1 mg of B-12 that seems very low?
Linda (mom) in CT
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