Before We Had Ever Even Heard of Neurofeedback:
My husband and I have been trying to get pre-approved by insurance for neurofeedback sessions for our 8 year old son for over two months now. I thought I might document a bit of what is has been like just trying to find the right forms of treatment for him. Because as any parent knows, trying to figure out these things is not so very easy when it's not a clear-cut diagnosis, or if it's something you suspect based off of behavior only. If you would like to know more about Sensory Processing Disorder, feel free to read over another post I wrote on that subject here.
Since my son was about 3 (our youngest), we began to notice several behavioral issues. The most prominent was a dizziness that seemed to overwhelm him at times. He would say "it's moving!" and his eyes would roll around and he would get super SUPER anxious, run around need to be held for half an hour, screaming, crying and generally miserable until this feeling of motion passed. Our response over time was first - to tell the pediatrician (my first thought was childhood vertigo, which it turned out not to be). Our pediatrician sent us to an audiologist and a pediatric ophthalmologist, neither of whom found anything to be wrong with his hearing or his sight. We went back though to these specialists for several years each time confirmation that this was not the problem. As time went on, the "moving" problem progressed. Other issues manifested. Extreme separation anxiety (EXTREME I tell you!). I've had my other children wailing in the halls of the church corridor outside the classroom for weeks on end, believe me. This was on a whole new level. Another new issue: defiance and opposition and an inability to understand cause & effect. No matter how rigid or disciplined we as parents set out to be, he would forget in record time what consequence just happened and set out to disobey again within seconds. Or he couldn't even verbally agree that there should results of bad actions or hypothetical actions (if we were just in a "teaching" moment).
Back to the pediatrician we went. This time a referral to a psychologist. I called this psychologist though and was so turned off by questions asked and after we "interviewed" each other I felt this was not the answer for us. So we went to a pediatric neurologist. After listening to my story and ruling out any kind of tumor or extreme problem, he thought maybe my son was dealing with some kind of physical obstruction in the inner ear area (causing the vestibular/ dizziness problems), so he decided to treat him as one would for a migraine. My son was put on a seizure medication called Keppra and we set a date for an EEG and MRI to get the full picture. The Keppra was a nightmare. His anger and oppositional issues skyrocketed. At one point, he walked up to a complete stranger and stomped on his foot as hard as he could! He was waking up yelling bad words and just could not control his own emotions.
So off the meds we went (immediately). I think we gave it 4-5 days before the foot-stomping incident. I gathered from the doctor that the only change he would make would be to put him on another medication. Nothing from the MRI or EEG results would really help us, except perhaps to have concrete information for his records. The same course of medication would be taken though. After much deliberation, we decided not to continue down the course with the neurologist.
I Started To Hear The Term "Sensory Processing Disorder" For The First Time:
It was about this point that I started to hear about the term Sensory Processing Disorder. Sam's story seemed to fit this narrative. The vestibular issues he has could be attributed to neurological problems similar to those under the umbrella of Autism, ADHD, etc. The anxiety and oppositional problems also might be caused by sensory issues. So, we made an appointment on the advice of a friend to go to an initial appointment to see an Occupational Therapist. She spent 45 minutes with Sam, watching him play, asking him questions, being pretty thorough. She put together a "sensory diet" of play activities and exercises that he could do. This was not covered by insurance and so we paid out of pocket. We continued the exercises for quite a while and maybe they helped, but very little.
After hearing advertisements on the radio, we looked into Brain Balance. Started by the author of The Disconnected Kid, by Dr. Robert Melillo, this group specifically works with children who exhibit behavioral issues under the umbrella of Sensory-Processing-Disorder or autism, ADHD, anxieties, ODD, etc. This clinic is holistic and is therapy not covered by insurance. It costs around $6000 for the first 3 moths and it includes sessions several times a week, plus home exercises tailored to the child and support for what they dub "Balance 360", instruction on how to eat healthy and eliminate foods that might cause food allergies and/or sensitivities. We didn't follow the Balance360 program very well, although we did try to apply it in balance to our family's food lifestyle. However, we did do the exercises and show up to sessions very religiously. And.. it was working! The home exercises really seemed to help. We could see major changes in behavior and slowly, slowly the dizziness seemed to be getting slowly better. It was so exciting!
During our 3 months, Sam's performance in school did show improvement, but he was still very behind in reading and writing. Academic progress was still an issue, and it just didn't make sense. The kid is super smart! He has an excellent vocabulary and a way of memorizing/ understanding technical and mechanical issues that is impressive. It just wasn't showing up on paper or in reading. His brain just didn't seem to "compute" that way as easily. So, in order to get more individual help at the public school we attend, I decided to revisit with a child psychologist. This time I did my homework and research and picked one that we were happy with. After testing, he was officially diagnosed with Separation Anxiety Disorder, Generalized Anxiety Disorder, and Attention Deficit Hyperactivity Disorder (ADHD). The psychologist suspected that perhaps the vestibular "dizziness" could be psychosomatic manifestations of his anxiety. We had him tested at school and he began to receive individual instruction for reading, which has helped.
Neurofeedback Began To Look Like A Viable Option:
Our choices for treatment were: therapy, meds or both. And I had also heard that neurofeedback for ADHD and anxiety were groundbreaking with amazing results. So, we've decided to pursue this before going forth with meds or therapy. We found the best therapist who administers neurofeedback sessions in our city. She gave us the proper insurance codes to call insurance with and see if we are covered. The preliminary EEG - yes! The neurofeedback sessions - maybe. We needed to have our doctor submit preapproval forms. So this I did. I ran the papers over to psychologists's office, asked them to FAX them asap to our insurance (BCBS). I called back a couple days later, still hadn't gotten to it. Kept calling every few days and finally a couple of weeks later when they still hadn't submitted the paperwork, I asked our pediatrician to do it. Which they did on the same day. (Be nice to the nurses! They can get things moving :)) So the waiting commenced. Two weeks later we get the letter in the mail - denied. I was so very disappointed but decided right away that we would appeal. According to the therapist, neurofeedback for ADHD and anxity is listed as a Level ONE intervention (same level as Ritalin or other meds) by the American Academy of Pediatrics.
After beginning the process of filling out paperwork for the appeal, I realized quickly that our nurse had submitted the WRONG codes for nuerofeedback. We hadn't even been turned down for the proper codes! So I called the doctor's office back and had them resubmit the paperwork for the correct medical codes. WHEW. Now that I type all this out, I realize that this took a lot of chasing down. So - that was two weeks ago. I call BCBS regularly and so far, it's been tossed from department to department and now they are reviewing it in Behavioral Health. I'm again waiting! It's been about a week and I eagerly go to the mailbox each day hoping to see the approval. If we don't get it, I will appeal. Eventually and soon though, we'll just pay out of pocket for the sessions, which will cost us a couple thousand dollars.
Meanwhile, my Sam is slowly, slowly progressing academically but not fast enough for me to stop worrying. I just hope he can keep up enough to not get down about himself. That would be so unfair considering what an amazing and yes - very smart kid he is! And the anxiety and oppositional defiance persists and overwhelms our family at times, although our best efforts at consistent correction and the regular Brain Balance exercises do help keep it somewhat at bay. I plan to write more as we continue down this path of seeking insurance and then as we endeavor upon sessions. So stay tuned, I'll let you know how it goes!
*Edited to add - It's been about a week since I posted this (today is 2/7) and I am still waiting on insurance. When I called to check, they said it could take up to 30 days. I'm about 20 days in on that wait. So still watching the mailbox eagerly!