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THE VOICE

Volume 6, Issue 6

  Page 3

a variety of ways and with the help of many friends and family members. He is now enrolled at Severna Park Elementary School in half-day "Level 5" kindergarten class and he has three hours of ABA in the afternoon through NJIEI.

Jacob has always had a good appetite, eating a wide assortment of foods.  But we noticed that he craved certain foods (breads, crackers, cookies, ice cream, and milk). Soon after eating these, he got wild and aggressive, running in circles, screaming, trying to bite and scratch people. We knew there had to be a connection. Another co-worker with an autistic son recommended Dr. Arnold Brenner, a Cure Autism Now (CAN) physician.  He follows the CAN protocols, which include the use of vitamin and mineral supplements, B-12 injections, and a gluten-free/casein-free (GFCF) diet. While Jacob was under Dr. Brenner's care, we tried various supplements (large doses of vitamins and minerals), B-12 injections, SuperNuThera products, and SerenAid (enzyme therapy). Each of these worked either a short time or not at all. As part of the nutritional therapy, we had to provide vials and containers of Jacob's blood, stool, and urine for testing.  Through these tests Dr. Brenner found that Jacob has numerous allergies and intolerances.  He helped us start Jacob on a GFCF diet.  However, when earlier this past year he began suggesting that Jacob undergo Secretin injections and chelation therapy, we decided it was time to part ways.

I found out about Neuro-Immune Dysfunction Syndrome (NIDS) and Dr. Michael Goldberg's work at a local FIAT (ABA support group) meeting about two years ago.  Dr. Goldberg is a pediatrician in California who specializes in working with ADD/ADHD and autistic children. When his wife came down with Chronic Fatigue Immune Deficiency Syndrome (CFIDS), he saw similarities between her bloodwork and the bloodwork of some of his patients.   Further research and testing showed him that people suffering with CFIDS, ADD/ADHD, autism/PDD, and many more illnesses had overactive, dysfunctional immune systems, likely caused by or brought on by a herpes virus.  For more information about NIDS, I recommend two web sites: http://nids.net and http://www.neuroimmunedr.com. Jacob has followed the NIDS protocol for almost two years and is doing quite well. Monthly blood draws show a slowly calming immune system. We are also seeing a young child emerge. The NIDS protocol involves using medications to moderate the immune system: antivirals, antifungals, SSRIs, and immune modulators. Non-medical interventions include a casein-free diet and other dietary restrictions, such as low sugar and removal of foods that the patient is allergic to.

Jacob has come so far, but our journey is not over.  We have high hopes for him, as every parent should.  My advice to other parents is to do research, stick to your guns, and question everything.  Attend talks, conferences, and seminars.  Don't be afraid to ask or speak up for your child.

Spotlight Family of the Month:
The Smiths
By Doris Smith


"I believe your son is autistic. Are you going to tell me you didn't know there was something wrong with your son?" These were the words of the Child Find speech therapist who initially evaluated our son, Jacob, at age 3.  "No, Mrs. Smith, whatever caused your husband's Guillian Barre Syndrome will not affect your son.  It's not genetic." These were the words of Jacob's former pediatrician when Jacob was 9 months old and my husband, Steve, was recovering from Guillian Barre Syndrome (GBS). I was concerned about the immunization Jacob was about to receive, as Steve had two innoculations two months prior to being struck with GBS. [GBS is a neurological syndrome caused when the body's immune system becomes "confused" and begins to attack the myelin sheathing surrounding the nerves. Myelin insulates the nerves. Without this insulation, the nerves and the muscles have a difficult time talking with each other. As de-myelinization occurs, paralysis sets in.]

These two comments put in motion a series of events that led us to a gluten-free/casein-free diet, Applied Behavior Analysis, and Neuro-Immune Dysfunction Syndrome. Let me start at the beginning. Jacob was born in September, 1995. He met all of the usual developmental milestones: rolling over, crawling, walking a bit late, saying simple words (mommy, daddy, cat, dog), even writing 3-letter words.  He knew his alphabet and numbers 1 - 10 early on.   When he was 6 months old, his dad came down with GBS and had to be hospitalized for a number of months.  It was a very difficult time, but we got through it. 

The day after hearing the speech therapist's pronouncement, I called Norm Masser, a co-worker with two autistic sons, and told him I needed a second opinion from a professional specializing in autism. Norm suggested Dr. C.T. Gordon.  Jacob had three visits with Dr. Gordon; at the conclusion of those visits Dr. Gordon confirmed that Jacob was autistic/PDD. But he also said something very encouraging:  "Jacob is an extremely bright and intelligent child. I foresee him being an engineer or mathematician one day."  He said that we could help Jacob meet his goal by doing Applied Behavior Analysis (ABA).  He told us how ABA had helped his own non-verbal autistic son.

We took Dr. Gordon's evaluation to Jacob's IEP team, who  refused our request that the county fund a 40-hour-per-week ABA program through the New Jersey Institute for Early Intervention (NJIEI).  NJIEI is UCLA's East Coast site for ABA through Dr. Ivar Lovaas.  Jacob is now in his third and final year of ABA.  We have privately funded it these three years in

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