We have been going to Dr. Walker for about a year now. Since we don't live in TX, we fly out there and stay for about a week at a time to do about 2 sessions a day. We had a first QEEG followed by a recommendation for 25 sessions (with 4 locations done each time). We did 5 to 10 sessions per trip with 1 to 3 months break in between.
Previous to the sessions, our son (9 years old - seizure on set 6 years old) had seizures when he had a fever and right before school started in the fall (maybe due to anxiety). They are simple partial seizures with visual and tactile perceptual changes like things looking bigger/smaller or faster, fingers feeling bigger. They usually last up to 10 min and goes away. Prior to starting Lamictal, his would have the initial seizure then a few small ones (a few second ones) for up to 3 weeks everyday. He also had anxiety and fear before sleep every night and could not be talked out of it. It is as though the fear was stuck and can't come out of his head as he put it. With the Lamictal, he gets the initial seizure with a fever the first night of a fever and none after that. He still had fear episodes once in a while before being sick but it went away quickly.
Although he only had seizures maybe 1 or 2 times a year (from fever), since the he still got them with a fever and despite being on medication, we decided to try NFB hoping that he can me med free/seizure free.
Back to the sessions, the first time we went, we did 10 sessions and he seemed better than ever. He was having some fear/anxiety once in while and especially right before being sick (not sure if it was related to the seizures or just him being tired). Anyways, all that was gone.
After the second set (5 sessions), he seemed generally out of it and his hand writing seemed to have gotten worse. This I am not sure if it was related to NFB or just him getting used to more homework in school etc.
He had a fever a few weeks after this last protocol. (So after 15 sessions.) I brought the fever down to about 99.5 before sleep but he still had a seizure about 1 1/2 hour after sleep. He usually cries and starts breathing hard like he is really anxious and is out of it for about 5 - 10 min then once he is awake, he still is having the visual/tactile type seizures but is aware of what is going on. This is usually accompanied but high anxiety and fear and we sit up with him for about 40 min until he falls asleep. This time it started about 1 1/2 hours after sleep as usual but he seemed more aware, we could actually ask him what he is seeing etc. (usually he is out of it and can't seem to understand us or is not aware). When we were sitting up with him, his anxiety went away pretty quickly and when asked if he is anxious, he said no although he still had the visual seizures. So it seemed like an improvement. Since his is not a motor type seizure we really can't "see" the difference/improvement but what we could gather with the increased lucidity as well as the marked decrease in anxiety appeared to be very good signs. Also, that same night his fever went up again around 4:30am. I was laying down with him (I always do this when he has a fever to watch over him), and he had his eyes closed but said mom, I am seeing things again and then went back to sleep a few seconds later. I also see this as a good sign in that if he has a second seizure in a night, he usually has to wake up again and sit up for awhile for it to go away which we did not have to do this second time.
After the third set of sessions (5 sessions), He was a little scared before sleep about sharks but we could actually talk him through it and he went to sleep right away. A couple of days after the sessions, he was watching Scooby Doo where a scary guy cuts what appears to be an arm with red stuff splurting out. Then the scene pans to show that the arm is in facta sub sandwich. He was scared that night but was still consolable. Other than that, he seemed really good.
After the fourth set of sessions (5 sessions - last protocol) he had extreme anxiety the night before the last day in TX/sessions, and was so emotional, he was crying, and fearful. We mentioned this to the NFB therapist who said they will speak to Dr. W. Anyways, the therapist said that we should finish the protocol so we did that. Our son to a much lesser degree, but still had irrational fear like scared that someone will enter our house, and we had to sleep with him. This continued for 2 weeks and suddenly stopped. Otherwise, his hand writing has improved and he was doing fine in school. This by the way was the last of the 25 sessions originally suggested.
He did end up having a fever for the first time in 5 months and we expected him to have a seizure as usual but he did not experience any. I am not sure if it was bec of the NFB or because I got the fever down before sleep and he only had a low grade fever all night. (Although in the past I have gotten the fever to about 99 deg. and he still had a seizure after falling asleep.) I looked at this as an improvement brought on by the NFB.
After the second QEEG, it showed improvement but high betas in the front part of the brain and some low thetas in small areas. Dr. W said that the high betas can cause anxieties. Anyways, he suggested another 10 sessions to fix these two areas.
We did the 10 in a week (2x a day). After these sessions, he again had some anxiety but to a much much lesser extent. He did want someone to lay down with him for a few days (5 days) after but was fine after that.
After the last set of protocols: One day I was working on homework with him and was a little hard on him. He did smell something like a glue stick all of a sudden. I didn't smell anything. Wasn't sure if it was a seizure. When he went outside the front door or out the garage, he didn't smell it (for smell type simple seizures, does it go away if you go to another area/location?) but when he went back to the desk, he could smell it again. We tried it a few times with the same results, where when he went outside or the garage, he couldn't smell it but could back in the house. So maybe it wasn't a seizure. This was followed by a scary feeling like he didn't feel safe in the house after I mentioned that maybe something is wrong.
After I was easier on him with the HW and was calming, the fear dissipated quickly and he felt fine. So I don't know if this was a seizure related (can anyone help me with this if a seizure can just go away like this?)
So am not sure if what I just described was a seizure. If someone can give me feedback as to whether a sensory/smell seizure comes and goes depending on location, and whether a psychic seizure /fear goes away after the stress is gone?
Anyways, back to the NFB. So we hadn't done a QEEG yet, but are planning to go back either in Jan/April of next year to do one and to see if he needs anymore NFB. According to the last QEEG, the improvements there. Whether it is really helping with his seizures is harder to tell since he only gets them usually with a fever. But the last time he had a fever, he didn't get them (even though the temp was lower) so that seems like good news.
And although he did had the side effect of anxiety after some of the protocols, they seem to just slowly go away. I am sure if he was only going twice a week, maybe that would have given him enough time for his brain to adjust and rest so that he may not have had the side effect as opposed to doing 2 time a day or 10 a week back to back. I am thinking that his may be the reason he had the side effect.
As I posted before, Dr. W's office is always packed and often times we are sitting outside in the hallway to wait for our sessions. I've seen the same people in the past year and they keep coming so I have to assume that it is working for people.
