Neurofeedback & Diet update, etc.

Dogchopper, you might want to archive this if you want, in case people want to read months later about neurofeedback.

I haven’t posted much lately about diet, supplements, or biofeedback, etc. because every time I do, I get 10 to 20 emails and I don’t have time to answer them anymore. Actually, the truth is that I want to go live my life & be a normal mom & not spend so much time at the computer. The last 4 years I have done hardly anything for me, I have spent time researching, cooking & taking my child to therapist appointments (P.T. 2-x week) and social skills classes, etc.

Most of you know last November I put difficult child on a gluten free/casein free diet. At that time, I also eliminated dyes, sugar, caffeine, preservatives & a host of other foods he tested allergic to (blood draw, not skin prick). I also put him on Nystatin Powder (4 x day) to kill the yeast. Essentially, I was putting him on an anti-Candida diet, also. He improved dramatically in 4 days with this diet (I took him out of school & cooked everything from scratch). We had also changed to distilled water for drinking and cooking.

Prior to this, my child had been kicked out of one preschool & almost was being kicked out of a “special needs” school for bright children (average or above average IQ), but no behavior problems. He had been on Ritalin at age 4, but we found a good doctor who switched him to Adderall, which we had to give him 3 x day prior to the diet. My husband & I didn’t dare take him off it on weekends, but we did a lower dose, usually. However, every few months we had to increase the dose of the Adderall, which gave him many side effects, included Obsessive Compulsive Disorder (OCD).

After reading about Bookmom’s & Susan’s experience with biofeedback, I decided to give it a try. (We had already been doing P.T. for sensory integration, social skills classes & therapy & behavior mod). I had checked into biofeedback in October of 1998, but didn’t pursue it, because I didn’t know personally anyone who had had success with it & our insurance doesn’t pay & it is very expensive.

I dedicated this summer to going to biofeedback almost everyday, M-F. This is the first summer in 4 years we didn’t have him on Adderall. We have had over 50 sessions, & I believe we will need around 120. Some kids improve with 10-20, but my child is extremely difficult in every area. He is severely ADHD. The doctors have wondered at times if he could be having Pervasive Developmental Disorder (PDD) or bipolar symptoms, but they always rule it out & say all we can determine for sure is that he is severely ADHD. We had his quantitative EEG done & it was not consistent with a child who has bipolar or Pervasive Developmental Disorder (PDD), but where ADHD kids usually either have too much theta/delta OR too little alpha/beta, he has both of these. This makes it extremely difficult to train (biofeedback) for. With his Oppositional Defiance, it just makes it tough to train. I am around a ton of ADHD kids and my child was so much worse & so much more difficult than any of those by at least double. Now, he is what I would consider only mildly ADHD. We are still working on the attention, etc.

My child was adopted at birth, premature (6 weeks) in intensive care for 10 days. His birthmother smoked & she received no pre-natal care at all until she was six months (she didn’t know she was pregnant for the first six months). He is of Irish descent & we found out he has celiac disease, a disease that a high percentage of Irish people have. These people lack the enzymes to break down gluten (& usually casein) in their intestines. This creates malabsorption problems & celiacs do not get the nutrients the foods supply. We had already been on Pfeiffer treatment vitamins for over a year when I started the diet, so when we did the diet, I believe he started absorbing the vitamins that we had been giving him.

My child was so difficult, so severe, so basically awful, that I did not turn my back on him to even shower (unless husband was home) for the first 3 ½ years of his life. We always had consistent parenting, I’m very structured, we had the top doctors & professionals & parent counseling, etc. Now we know that gluten/casein damaged his digestive system. The doctors should have suspected celiac, as I took over 20 runny diapers in to them to test. They said, “No blood, he’s fine”. Anyway, now he is happy, can handle just so much more of life & isn’t always angry. This child has had the best of everything, always, and there was no reason to be angry. Now that he feels so much better (because we eliminated his allergic foods and he has no gluten), he doesn’t even mind the diet. He is so much better behaved, able to deal with sensory issues better, better able to just cope with everything.

Anyway, my reason for this post is to tell you I thank God for the changes our diet has made and I thank God for Bookmom & Susan, both of whom encouraged us for the biofeedback & held my hands through it (and we are still learning). I do NOT know enough, or understand enough about biofeedback (Neurofeedback) to reply to questions about it in an email, so please don’t ask me questions.

My child is 7, is in first grade & has had a “fantastic” first few weeks (according to his teachers). We aren’t off Adderall, but we are at the same level of Adderall (5 mg. Morn & 5 mg. Noon) that he was first put on over 3 years & 25 lbs. (less) ago. My hope is to someday have him be on no medications. & I believe we can achieve that with about 120 biofeedback sessions. My child is doing better at school than others who were born with far fewer deficiencies.

Good luck to all & I hope many of you can have the success we have found. I still peek in & lurk on occasion, but I’m really happy (had to get over the PTSD that caring for this child’s endless needs gave me) & moving into a ‘normal’ life now.


P.S. Biofeedback works on a lot of different things. It works on the central nervous system, so one key for us is that it calms the digestive system, which helps the digestive system/immune system work better. The body/mind is so interconnected. That is what I’ve learned through our journey. The medications work on the symptoms of the behaviors, but the medications do nothing for the long term healing of the body. I believe the digestive system has to work properly in order for all other systems to work properly. The central nervous system being corrected is key to all these other areas working right, so biofeedback (neurofeedback) helps the CNS.

That is great!! I will definately archive this!!
Since I got this job as a bus driver and now have good insurance I WILL be doing the biofeedback!! I called up the insurance co before I choose it to make sure they pay for it. AND I dont need to be referred by my primary doctor! YHIPPPPIIIIEEEEEEE

Anyways, I hear it does take a long time for some kids to respond!! But I also hear it's worth it if you can stick it out!!!!!!!

Im glad your son is doing better!! God has answered your prayers!!
Please dont be a stranger!! Keep in touch. Email me too sometimes!!

7 yr old girl Bipolar/ADD/ODD
Currently on a new natural treatment (wish me luck)
off ALL medications!!
Fav. Funny quote- "Yesterday I was a dog. Today I'm a dog. Tomorrow I'll
probably still be a dog. <Sigh!> There's so little hope for advancement."
- Snoopy

"With out God, my life would fall apart"