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)
Gregory -- 18 months old
Our son Gregory presently is 18 months old and has Down Syndrome. He is an amazing little guy! He is totally blowing away his therapists, pediatricians and developmental specialists along with his other health care providers. They just grin from ear to ear when they see him, their comments “Wow he looks great, I’ve never seen a baby with DS his age that looks this good!” Just recently he started talking, he is saying Mama, Dada, Ball, Bye, All Done, and Nana for Grandma. He knows about 15 -20 different signs and can recognize WORDS without a picture, he signs the flash card words, “elephant and “arms up.” He is also very good at making animal sounds. He tries really hard to do the piggy sound, moos, roars and says BRRM, BRRM while pushing his little cars on the floor. He loves books and has been turning pages since he was about 6 months old. He began sitting up at 8 months, scootching/ crawling at 11 months. At 16 months he started cruising along furniture and now is very close to walking. He is taking steps while holding our hands and is climbing up on everything and is going up stairs. He has a very good attention span, will sit on the floor and go from toy to toy playing for the longest time. He is very engaged and his therapists love working with him because he never gets upset. He loves to show off! They say that he is very “Clever”. He loves music and moves to the beat of songs when he hears them on TV or the radio. Just the other day he began to exhibit Stranger Anxiety, a developmental milestone. This past week he was evaluated by his developmental Pediatrician, and got raving remarks. She said he is developing along quite typically and suggested that I start looking into preschools and kindergarten and also is recommending a fully inclusive classroom.
I truly believe that Gregory is where he is today because of Changing Minds Foundation. I don’t know how he would be otherwise, because, by the Grace of God, we found out about the CMF Protocol when he was 4 months old. We started it slowly and gradually at 5 months of age, started with Ginkgo Biloba, then Vitamin B12, Folinic Acid, PC and Balance Oils. Prozac was introduced at 10 1/2 months of age. No side effects have been noted. He takes all supplements and Prozac without difficulty. I have also added other supplements to his protocol: Longvida Curcumin, EGCG, Rhodiola, Coconut oil, Milk Thistle, Vitamin D3, Cod Liver Oil, Evening Primrose Oil, Vitaspectrum ( a multi vitamin/mineral), Probiotics and Colostrum. These additional supplements and others can be found on a blog made by a parent of a DS child. www.dsdaytoday.blogspot.com
There is scientific rationale behind each supplement and medication on the CMF protocol. After thoroughly reading and studying this material and learning that DS is a biochemical/metabolic disorder, the decision to begin the protocol for our son was clear. The chemical imbalances in the brain of DS individuals are the culprit for causing the life altering struggles with speech, learning and memory. I want to do everything in my power as Gregory’s Mom to lessen or completely prevent these devastating problems. Thank you Changing Minds Foundation!
Lily -- 2 Years Old (update)
Update May 2011
Wow it is hard to believe that Lily has been on the protocol for over a year. Since the last update Lily has done so much. She is now 21 months old and doing very well. At 21 months Lily weighs in at around 30 lbs and she is a statuesque 33.5 inches. Right after I wrote the last update, when Lily was 7.5 months she was able to sit without support. I had adjusted her dosages several times over the last year but she is currently taking 1tsp body bio oil, 1tsp PC, 120mgs ginkgo biloba in the morning and 120 mgs in the evening. She also takes the recommended amount of b12 and folinic acid daily. Separate from the protocol I also add a daily children’s probiotic (we use culturelle for kids). When Lily was around 12 months we started seeking out a doctor to prescribe Prozac to Lily. After about 1.5- 2 months of searching we found what we were looking for and Lily started Prozac (4mgs daily).
Now to get to all she has accomplished in the last 14 months. Right after Lily’s first birthday she began getting on all fours, within a week of the she started to crawl on her hands and knees (she never “army” crawled or made forward movements before that) After she started crawling she began taking Prozac (at 13.5 months) she started to go from laying to sitting, pulling to stand more often and cruising furniture all within a couple of weeks. All through the holidays and in to the new year (between 15 and 17 months) Lily mastered cruising and in Late February/ early March Lily began walking from one object to another about 2-3 steps. During March and April Lily went from 2-3 steps to over 30 steps in a row without falling. I guess I could say she became a walker at 18 months and shows no signs of slowing down any time soon.
Lily has also been doing very well cognitively; at her ECI evaluation (done at 13 months) she was “scored” at 16 months in the cognitive category. Lily has emerged in the last 6 months with more pretend play such as “feeding” a baby doll, hugging the baby doll and following simple directions like giving kisses, clapping when we ask her to, and when we ask her to go get a book, she goes to her bookshelf and brings back her book for us to read to her.
When it comes to her speech, she is more delayed than I would like, but we are getting there. She tries to say several words, including Giraffe, yes, all done, happy and kitty.
We are looking forward to the future and all that Lily has to offer this world! Not sure I care to know where she would be without the CMF protocol.
Lily will be 2 in just two weeks. She is now just about 31 lbs and nearly 35 inches tall (growing like a weed) Lily is now almost running and she takes any opportunity to get away and do something sneaky. Her favorite place to go is her brother’s room. Lily has several signs that she uses on a consistent basis and she is beginning to make the sounds that go with those signs. She is not completely understandable right now but she is getting there. I just love that she wants to try to talk. She is probably the most social child I have ever been around. Lily loves books and stacking blocks. She also loves to put coins in her pink pig. These are all fine motor tasks that I was worried about her being able to achieve. In November Lily will be released from the ECI program because she no longer qualifies for PT. She has met all her goals according to them and they cannot keep her. I am thrilled! I know that she still needs to learn to jump and climb stairs, but I can help her with that. Right now we love life and Lily. I could not be more thrilled with her development and progress. She has shown no signs of slowing down anytime soon. I will update again before the end of the year.
Jill (Lily's Mom)
Jett -- 16 months old
Tyler -- 14 years old
Parker -- 18 months old
Alex -- 2 years old
Nicholas -- 20 months old
Here are some Testimonies from many of the students that
Joanne Mothes tutors:
Mac -- 6 Years Old
John -- 5 year old boy on protocol since 9 mos. old
Katie -- 2nd grader on the protocol
Meet Lily -- 7 months old (on protocol for 4 months)