Stories of children on the CMF protocol and the changes it is making in their lives
MaKenna Neumann — 7 ½ years
“MaKenna Neumann was born at full term in November 2007. Her diagnosis of Down syndrome was at birth. She was entirely breastfed the first two years of her life. She did not at first breastfeed effectively until she had cranial sacral therapy to adjust the back of her head when she was a few weeks old. Immediately following an adjustment by a cranial sacral therapist, she started to suckle so that she received enough milk to thrive.
MaKenna started on the CMF protocol when she was 4 ½ years old. We started her on gingko biloba and within a few months of starting that herb, she was actually jumping off the ground.
One of my friends from junior high school had seen the documentary for Changing Minds Foundation listed in a local film festival. She sent me the information and I was so intrigued by what I saw online. Our local Down Syndrome Support Group in Southeast Idaho brought Teresa, Joanne and Stacy to our small town of Pocatello, Idaho to educate the local families who wanted more for their children. It was so much great information that those ladies shared with us that day and several families in our area are seeing great results with our children who are on the protocol.
MaKenna learned to swallow pills by first swallowing tic tacs, then swallowing M&Ms, then swallowing skittles, and then swallowing pills. We did try the special straws and the special pill taking cups, etc, but none of that seemed to work for her. In July 2013, she swallowed a souvenir flattened penny that her older brother had in his room. She had to have that surgically removed. We stopped with the supplements for a few months following that incident.
She has had Prozac in the past, we had it prescribed by a local psychologist. However, she is not currently on it. I wanted to wait until her thyroid treatment was determined.
One of the big pieces of the puzzle has been to get MaKenna’s thyroid treated. She has had chronic constipation since birth and thyroid medication has helped ease that issue. We are working on getting a cleaner diet for the whole family. We do mainly gluten free but we are still working on eliminating dairy and soy from our diets. The soybean oil is in a lot of processed foods that are convenient for our family at this point. Focusing on more healthy food choices is our goal.
This school year, MaKenna was in the first grade and mostly included. She was pulled out for speech therapy twice a week for 15 minutes. She was not performing all of the school work that her classmates were doing at her desk on her own, but she would sit quietly at her desk and engage herself. However, when the classroom was given more freedom, she used that opportunity to walk out of the school building. This was a safety issue, so I began home schooling her. She has done a great job at homeschool and I am planning on her returning to her school building to repeat first grade and to have more supervision.
Our family has two copies of the C677T MTHFR mutation. From my limited understanding of this mutation, our family should avoid folic acid as much as we can. Looking at some rice milks at the supermarket, shows that some of them are fortified with folic acid. Many vitamins and health drinks are fortified as well. Eliminating the folic acid helps our family with our detoxification pathways.
Currently, MaKenna takes 32.5 mg of nature-throid in the morning and 16.25 mg of nature-throid in the afternoon. She takes the following in the evening: 500 mg liposomal Vitamin C, 500 mcg B12 spray, 160 mg Gingko biloba Ultra Gingko!, 100 mg ubiquinol, 400 iu Perfect E (Vitamin E), 1600 mcg Folinic Acid, 150 mcg Vitamin K2, 5,000 i.u. Vitamin D3, and a probiotic pill.
She has had a palatal expander installed for a year now. So she has had issues taking large pills for the past year due to the expander being in the way. It should be removed this summer. It has really helped her face broaden and her sinuses open up. She had compliance with putting the device in with lots of trinkets being offered to her by the orthodontic assistants. They have done a great job.
She requires a reminder to go on the potty during the day, but she is dry all night long. She has to be reminded to defecate in the toilet, she won’t usually do it on her own unless she is reminded.
She enjoys participating in ballet and girl scouts, and memorizing her bible verses for her AWANA class at church (www.awana.org). She learns the bible verses to music and has a recorder that she plays the songs during her weekly bible verse time. She has learned all of the books of the bible, in order. MaKenna has started to learn to play the piano as well. And her swimming is coming along with biweekly personal swimming lessons. She can hit a ball (either left or right handed) and run the bases at t-ball. Her hockey stick handling skills are very good. Her favorite pastime is to jump on the trampoline with her 3 brothers. She can also pedal a tricycle and a bicycle with training wheels.
The next steps for MaKenna will be to read fluently at grade level, tackle the first grade one more time and start Prozac again and start receiving B12 shots. Thank you Changing Minds Foundation for our family’s wonderful dreams for MaKenna’s future!”
Maria (MaKenna’s mom)
Alice — age 14 months
“Alice was born January of 2013, and though her diagnosis was not known until she arrived, I immediately started learning everything I could to help support her mind and body to help her achieve her greatest potential. In my search, I was directed to the protocol for CMF, as well as all of the medical research that was behind it. I did a lot of homework, spoke to everyone I know in the medical community, and decided that the benefits were too compelling to ignore.
I started Alice one supplement at a time, and at 4 months, added Prozac as well. At 14 months, she takes the full basic protocol plus a multivitamin tailored to kids with Down Syndrome.
Alice is thriving, her muscle tone has radically improved since birth. She does a full roster of therapies and attends a The Rise School of Houston, a pre-k in Houston for kids with and without developmental delays. Alice is alert, focused, great at back and forth play, very verbal, curious, determined, and very lively. There are very few differences between her and any 14 month old, and I do believe the nutritional intervention and CMF protocol coupled with neurodevelopmental programs and therapies has given Alice an incredible head start.
I urge anyone considering these options to do your homework, read the research, and make choices that you feel comfortable with. For us, there’s no way I could ignore the benefits things like Gingko, EGCG and Prozac offer. Alice’s progress is the best testimony I can offer. I can’t wait to watch her grow and reach her full potential. “
Cara (Alice’s mom)
Landon — age 6 years
Landon is almost 6 years old, he is 38 inches tall and weighs 35 pounds. We were first introduced to the Changing Minds Foundation in the fall of 2008, and have slowly implemented most of the protocol over the last few years. Due to Landon’s medical history, down syndrome, a repaired esophagus that has no muscle movement [ea/tef], and a repaired heart [av canal/VSD], we have introduced new medications/supplements slowly and incrementally. He is still entirely g-tube fed a soy pediatric drink and takes multiple medications daily to control his reflux and allergies. While we never approached this as a way to “cure” Landon’s down syndrome, we do feel that the protocol has helped maximize his potential. We have only experienced positive side effects; his health, nor his sweet personality, have been negatively affected by any aspect of these supplements. We closely monitor any and every change we observe, and he has numerous doctors and therapists that have helped guide and advise us throughout each phase of his development. For us, we would not change anything, but from what we’ve observed, the earlier a child begins the protocol the better the result.
Landon attends the Rise School of Houston [M-F, 8:30-2:30, year-round curriculum], 1 ½ hours of private speech therapy weekly, one hr/week physical therapy, one hr/week occupational therapy, one hour weekly of preschool gymnastic [with typical 3-4 yr children, Cypress Academy Gymnastics], and attends Sunday School at our church with typical 3-4 year old children. Currently, in addition to Landon’s medically required prescriptions, he is taking 120 mg of Gingko Biloba twice daily [once in the am, and once in the afternoon], one tsp of Body Bio Oil, one tsp of PC Oil every morning, one tablet of Tenex in the am and another half in the afternoon, 20 mg of Vyvanse every am, and 1.5 ml of Prozac once every evening.
When Landon started taking gingko biloba at 2 ½ years old, his retention and response to information improved, and his physical therapist noticed an improvement in muscle tone. He first started Prozac on a very low dose, 0.7 ml, and during the first couple of months he was making significant progress in speech and walking, but it was hard to know if it was due to just time and therapy. However, when we bumped him to 1 ml of Prozac, within the week he completed potty training on his own. He had been making slow progress, but that week he just started staying dry and signing to go, he also made huge leaps in speech and signing soon after. Within a few weeks, at age 3 ½ years old, he was entirely potty-trained (day and night), and his expressive and receptive language substantially improved. The body oil seems to help his dry skin have fewer bumps, and his bowel movements are helped. The PC oil is by nature hard to observe, but Landon seems to throw and grab things less often as a result. His ADHD meds have changed a few times over the last two years, we started on Focalin and had no effect initially, then on a slightly higher dose [still low, though] it had an adverse effect – he was in fast forward and emotional. He had a better response to Vyvanse, calmer, following directions better, and better organizational skills, but he also seemed more sensitive, and at moments sad. Tenex seems to work well for him, he is more focused and his personality seems unfazed by the medication. Recently, we also added a low dose of Vyvanse to his Tenex; this seems to be working, for now. With the combination of medications, he is less impulsive, more organized and responsive, and still happy and outgoing.
Landon’s speech is still very delayed, the fact that he has been tube fed his entire life, hospitalized the first half of his first year and sporadically since, surely contributes to this. He is extremely active, athletic, a great problem-solver, and quite coordinated. Landon enjoys puzzles, riding his bike and motorized 4wheeler, and playing games on his iPad. He is social, friendly, and compassionate. As his parents, we firmly believe that the protocol has positively benefitted our son. We feel that many children with DS could also further maximize their potential with the aids of medications and supplements; all of this is combined with education, therapy, and lots of love!
Melanie Duncan (Landon’s mom)
Robin — Age 14 years
Robin is now 14 years old. We started him on the CMF protocol 4 years ago, when I read about it on the awesome site by Miriam Kauk “EINSTEIN SYNDROME”.
Although we had been following a neurodevelopmental program since birth, as well as a nutritional protocol from International Nutrition which included Piracetam and Nutrivene D, once Rob got to be of school age, I felt that he could do even better academically. So I decided to give CMF a try!
Both my husband and myself were/are very pleased at Rob’s gains in the last 4 years.
-biking without training wheels
-batting and catching a ball
-riding a horse with voice and leg commands on his own
-balancing and using the monkey bars (brachiation ladder) unaided
-taking a more active part in contact sports (soccer, volleyball, softball)…but he would rather watch a movie or play on his Xbox…ha!
Rob has a full day of academics at our local school. Although he is not mainlined, I teach him myself but he is in daily contact with the rest of the student body. He participates in drama/music/art/sports with the rest of the school.
Completed the second level of the Edmark reading program. Currently on the Reading Horizons protocol and doing well with minimal assistance.
Type to learn 4. Has learned his hand positions and is gaining speed and accuracy.
Slow but steady. Is now on an online program called Destination math level 2.
His speech and vocab. have increased dramatically. He uses and understands puns and jokes and turns of phrases which are appropriate for the most part, as well as amusing! Rob is able to follow simple instructions such as:
Call your gramma, ask her if she wants her laundry hauled to the laundromat. Then, if so, go fetch the wagon (he carries her laundry in a radio flyer), go to her house (about 5′ away down the path), load it and bring it to the laundry room and unload it.
I believe Rob is improving in his ability to process abstract concepts and ideas. He has also made marked improvements in his SELF HELP SKILLS: personal grooming, showering, dressing. Has learned how to handle buttons and jean clamps (hard for me sometimes!), still using VELCRO (awesome invention, who needs laces!) for shoes. I find that when he WANTS TO he can get himself outside at -20 degrees FULLY OUTFITTED FOR THE WEATHER, hat, gloves, packboots, snopants, etc. with hardly any help from anyone in the house….it’s all about MOTIVATION…lol
I think there is a short clip of him making himself an omelette. Of course he would RATHER have mother do it!
Rob works on his laptop with minimum monitoring. It has proven to be a useful and practical tool for improving his learning skills.
Rosetta stone Spanish 1. Does well with this software.
In a flash (from the makers of IN A FLASH WORDS, IN A FLASH MATH, IN A FLASH ADDITION, ETC.)
For basic math, sight reading, auditory & visual sequencing skills.
For speech/fluency/grammar and phonemics. With min. Monitoring.