Lily -- 2 Years Old

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.

Update: 9-1-11

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)

When we found out that our sweet two-week-old baby, Jett Lukas, definitely had T21, I was devastated. Between the diagnosis and struggles with breastfeeding, I cried for about three weeks straight. But when he was three months old, I discovered the CMF website. What a revelation! 

Finally, I found what I was looking for: real answers to treat and possibly cure my baby. Jett has been taking ginkgo consistently since he was 4 months old. (It took me a month to work up the courage to give it to him.) I slowly introduced all items of the CMF protocol, introducing Prozac last at 12 months old. At 16 months, he's on all of the protocol for a child his age, but we have just recently stopped Prozac.

I am quite pleased with the results. At 5 months, Jett first rolled over and was on target as far as milestones. He drank from a straw at almost 6 months, the day before his heart surgery. Because of surgery, his physical progress took a major set back. So, with a lot of neurodevelopmental therapy, he was army crawling by 10 months, creeping and pulling himself to stand at 13 months and beginning to cruise at 14 months.

Cognitively, he's been going strong. He randomly said clear words and phrases off and on starting with "Daddy" at 6 months. (And said "okay", "alright", "go' boy", "oh boy", and "hey" all the time.) At 8 months, he spoke his first word of intention: "water." At 10 months, he used, "ilk" (for milk) regularly.

He consistently uses his potty for "number two" since at least 10 months old and has been letting us know when he needs to go since he was at least 6 months old.

At 11 months, he had his first speech evaluation with Renee Hill of Talk Tools. She was amazed! She said that she had to evaluate him using the typical scale, not the one for children with DS. She said he was on par and above the typical child. He has no tongue protrusion, great lip closure, strong jaw muscles, etc. She said it was the easiest evaluation she'd ever done and had the least amount of suggestions.

She was blown away by his cognitive ability. She was showing me how to teach him to blow and pop bubbles. She said it may only take me a day to teach him although it takes most kids with DS much longer. Then she said, "Oh, well, he just got it! That took two minutes." She then spent the last hour of the evaluation asking me what all I was doing with him. She was very interested in the CMF protocol. She commented that even with great oral motor skills, our children can't communicate very well without cognitive ability.

At 15 months, he first enjoyed cruising around the bathtub, nested cups together and putting items into boxes. He just turned 16 months old and he interactively enjoys books with you by pointing to pictures and text (with his thumb) and having you name objects and reread text. (His favorite book at the moment is Clip-Clop by Nicola Smee.) Although he's not talking, he babbles all the time and tries out about 3-4 new words a week.

He is alert and curious. He can play ball with you, open drawers and take out the contents, can follow simple, one-step directions (no kick, sit up, get ball, come here, let go, etc.)

At his last meeting with Jett's neurodevelopmentalist, Kay Ness of SENC, she said he had gained 12 months of improvement in the 3 months since she had seen last evaluated him.

I think the great research and suggestions provided by the CMF have been instrumental to his success. The elements of the protocol work together very well (along with the additional items Jett gets) to provide him with the tools he needs to generate new brain cells, to fortify his short-term memory, to transfer memories to long-term storage and to prevent degeneration. So when I do therapy with Jett, I feel confident that he is actually learning, retaining and building on his knowledge. I can see him playing with more creativity and independence every day. It's a joy to witness his daily progress. I am grateful for Teresa Cody's hard work and determination in helping our children through CMF. I am happy to share with you what is working so well for Jett and wish you equal success with your loved one!

Jett's supplement list:

(For his most up-to-date list, see Jett's Complete Protocol. I've blogged about a lot of these items so, I've included the link to those pages as well.)

-A multivitamin targeted for DS 

-Gingko Biloba Jett gets more than the minimum of ginkgo with 120 mg split up into three doses. I feel this has been vital to his cognitive development. For an infant Jett's age, 30% of his sleep should be in REM. Ginkgo helps restore REM sleep. Lowered REM shows up in patients with IQs under 70. On ginkgo, Jett's REM is 22.3%. This number is amazing! His doctor said in the eleven years he's been doing sleep studies, he has never seen a person with DS with REM as high as Jett's. I have the complete sleep study results & explanation on these blog posts: Jett's Sleep Study: Mommy's Nightmare and Sleep Study: The Results.)

-Longvida Curcumin  Has been taking since 8 months old. I have seen great results in his verbal ability on LC.

-TriEnza Enzymes

-B12 I've also noticed this does a lot to help stimulate Jett's appetite, so I give him more than the minimum dose.

-Folinic Acid 

-BodyBio PC So important as building block for the brain!

-BodyBio Balanced Oil, sunflower/flax mix or hemp oil (it has the same fat ratio)

-Vitamin D 3

-Probiotics

-Fermented cod liver oil and butter oil

-EGCG (green tea extract) I've seen a lot of improvement with his short-term memory since this was added to the mix.

-Evening Primrose Oil  

-Floradix (nonconstipating iron supplement)

My son Tyler is 14 years old. He has a dual diagnosis of Down syndrome and Autism, along with Hirschsprungs. Four years ago this summer, he had a dental procedure. He was given demerol. He was not to be given any meds but lidocaine, because we had already experienced respiratory distress with these meds when he had his tonsils removed. Due to the loss of oxygen, he suffered frontal lobe damage. This is when we received the autism diagnosis. (He always had AU but had been in intervention since birth so symptoms were slight). His brain healed 6 months after the injury per MRI, but his skills did not come back. (He lost all communication skills, signs, verbal, pointing). He has been in intense speech, OT, ABA for years now. With only glimmers of improvement. One day he may communicate and can't the next. One day he will know his colors, but won't the next.

He has been on part of the CMF protocol since 2/26/11. He gets 240mg Ginkgo Biloba and 400mcg Folinic Acid. I am adding elements of the protocol slowly, due to his Hirschsprungs.

Tyler is now making 5 word requests without prompts!  He is writing his name consistently, he knows his colors, and he counts to 20. He is playing games and pretending. His gross motor skills have improved so much! He looks like a pro on the soccer field. He has always been on skills in special olympics, and he is now on the soccer team. He put together a 24 piece jigsaw puzzle that he had never seen before all by himself!  He has a personality now where he hasn't had one since the regression. We have been dragging him threw life since the regression. Now he is in our world and is so happy because he can communicate!  He has never been potty trained. He goes on schedule. Last week at school he told his teacher he needed to poop!  Remember he has hirschsprungs!  We have been told by DS clinic, AU clinic, Pedi surgeon that this would NEVER happen.

I wish that 4 years ago when I was first shown the CMF protocol,  I would have started it. His teacher and therapist are very impressed. We have not seen this much improvement in such a short amount of time.

Thank you all,

Gerrie

Tyler's mom

"I wanted to tell you that Tuesday and Wednesday, during our P.E. time, after we walk the track, the boys play on the red "pillow" that is used for pole vaulting.....anyway, sometimes the boys wrestle and Tyler just hangs at the end.  NO, this week he has joined in the play wrestling with them.  It is fun to watch his progress."

Tyler's Teacher

"There is this girl at special olympics that is always hugging and hanging all over Ty, which he hates.  He will take it for awhile then push or hit her.  Last night, when she got there, he ran to her and gave her a hug.  HE HUGGED her!!!"

Gerrie

"Had the best day!  Tyler put a 24 piece jigsaw puzzle together by himself, with no help.  It was a new puzzle he had never done!  He sang 3 songs all the way through:  Row Row Row Your Boat, I love you, and Skitereminky Dink.  Played Duck Duck Goose, London Bridge, hide and seek, he counted to 20.  He is no longer spending his day stemming.  He hasn't played since the regression.  When we would try he would tantrum.  We have added 120mg of ginkgo at noon.  We are so happy!  My 12 year old son, his brother, is thrilled!"

Gerrie

"Tyler has Hirschsprungs too.  He has never initiated going to the bathroom.  Today at school they were outside playing kickball.  Tyler actually told his teacher he had to go to the bathroom and he made it there in time. The school is very impressed!"

Gerrie 

Grace -- 8 1/2 years old

Grace  is an 8 1/2 year old who lives in New Zealand with her family.  Her mother, Christine, found Changing Minds Foundation online one day by accident.  She was searching for a toilet training method to help her train Grace, because at age 8, she was still not using the bathroom by herself.  This is a big issue for many children with DS and can be quite frustrating for parents.  Since beginning the protocol, Grace has had many changes in her life.  Her mother wrote an article about it for her local DS association newsletter. 

Click Here to read Grace's Story

Parker started the CMF protocol at 14months after having open heart surgery. Parker had always done very well meeting developmental milestones (sat up at 7months, started army crawling at 12months, was very verbal; had consonants early, said “hi” “mama” dada” by 12 months, could wave “hi” and “bye” by 12months) but once he turned a year things started to slow down, his “locomotion” was one area that he had always struggled with and certainly was delayed. When we first found out about Parker’s diagnosis of Down syndrome so many friends told us about Teresa and the CMF protocol. One of our dearest friends was a personal friend of Teresa’s and it seemed at every turn God pointed us to the CMF protocol. We started speaking to other parents on the protocol and their response was truly amazing. They had seen such significant changes in their kids! We then took the information to Parker’s Dr’s and they were in support as well.

We started the protocol one piece at a time. We started with Body Bio oil, then Ginkgo Biloba, PC, B12, Folinic Acid, and finally Prozac. We started with half the recommended dose of each item and over the course of a few days to one week we added more of each item. We continued to build and add another item weekly until we

had Parker on all the pieces. We believed this would give us the best way to measure the “differences” and to not upset Parker’s stomach. We knew by going slowly we could track any negative reactions as well. We noticed an almost immediate reaction after starting the ginkgo. Parker had always been very verbal, but his “chatting” became more deliberate and the most exciting change we noticed was his immediate ability to “imitate.” Our daughter was playing “indian” with him one day and he immediately imitated her! In the past it had taken us many, many, many times to get him to imitate! Sometimes he would imitate our actions, others he would not. Now, he almost always imitates our actions! Parker’s physical strength changed too. He had begun to pull up

on things before we started the protocol, but he couldn’t seem to figure out how to pull correctly. After starting the protocol he immediately started pulling up and more exciting he started climbing stairs! One day it was two stairs, then the whole flight! He had been self-feeding with the pincher grasp before starting the protocol, but after we began the protocol his accuracy immediately increased.

The true test to his changes came when we returned to therapy after being off for 7 weeks after surgery. All of his therapists could not believe the differences! His PT could not understand how he had met all of his short term goals in 7 weeks when he had physical restrictions from his heart surgery! She wanted to know what had happened! He could pull to stand, cruise the area while standing, climb the stairs, and crawl on all fours! His verbal changes were even apparent, his communication seemed more “with it” and just in general he is more “engaged” in conversation. He responds appropriately and is constantly aware of kids, adults and those around him. He is eliciting their response which is not something he did prior to the CMF protocol.

Many will say, “How do you know it is the CMF protocol that made the difference and not his repaired heart?” Well, in Parker’s case, his heart was not affecting his physical development. He was rare and blessed to have no symptoms from his heart defect, he was on no medicines, and had no restrictions. Others will say, “Well, you were working him with home and had lots of therapy weekly, so maybe that made the difference.” We believe that therapy and the other support activities we do at home for Parker certainly help, but remember before we started the CMF protocol he had NO therapy for 7 weeks. We were restricted on lifting him from his arms/chest, so that simply cannot be a contributing factor. These changes occurred as a direct result from the CMF protocol.

Today at 18 months, 20lbs, Parker is beginning to practice “letting go” while standing and he is constantly climbing, creeping with amazing speed, and standing, cruising everywhere. He can walk with assistance. He has added many new words and daily we see new gains. He has been on the full CMF protocol for one month (remember we started slow) and we look forward to seeing more changes. He currently takes 120mg of gingkgo, 1.25ml of Prozac, and all other items as prescribed by the dosage chart based on his weight. Our only regret is we didn’t start sooner. In hindsight, we wished we had started before surgery, stopped for the recommended time, and then resumed. Children that started earlier than Parker have made more gains and stayed closer to

the “typical” milestones. That being said, we know that God has the perfect plan and we trust in His divine plan for Parker’s life. We were very blessed to have supportive Drs and had no issues getting an RX for the Prozac. We have been meticulous about documenting everything and are more than willing to share with new parents. In the beginning it was hard to figure out how to get the supplements and such into his food (and get him to swallow them all), but we have a good system now and are happy to share! Parker has had no ill effects from the CMF protocol. It has not upset his stomach, caused “irrational” behavior, nor affected his sleep patterns.

We are so grateful to Teresa and humbled by her unwavering desire to continue to fight for our kids. We are inspired by her unwavering strength to continue to “spread the word” even when many were critical of her efforts. Today we stand as an advocate for the CMF protocol and know this is a way to give Parker independence and freedom that all of our children truly desire and deserve!

Lara

Parker's mom

Alex currently weighs 22 lbs and is approximately 24 inches tall. He takes everything on the CMF protocol except the Focalin. Alex started the protocol (minus prozac) at 2 months of age. At 8 months we began giving him prozac. In regards to progress it's hard to tell because he has always been on the protocol. Last week he received his biannual evaluation back from his speech therapist where she noted his progress as excellent and above expectations. She also commented that she needs to do more monitoring of him than working with him. Alex usually masters his exercises within the same session.

Alex turned 2 on 9/06 and started walking on his own at 19 months. As of today he is into everything! He climbs up and down stairs, signs to communicate, and last week moved a trunk next to our kitchen table & used it to climb onto a chair so he could get on top of the kitchen table! Great problem solving skills! We also started potty training him a month ago and he used the potty everytime we put him on it the first week. He can also show you all his bodyparts.

Millicent

Alex's Mom

We started Nicholas on Ginkgo the last week of May 2010.  We then added the PC and Balance Oil a week later, and finally the B-12 and Folinic Acid the following week.  We have been on the protocol since June 7th of 2010 (about 5 ½ months).

We have seen huge improvements in Nicholas.  The first thing we noticed was the presence of his opinion.    WOW!  Nicholas didn’t have the desire before to let us know what he wanted whether it was food, diaper change, or even to play.  That has really changed now.  He is very focused on what is going on around him and wants to be involved.

Before the protocol, Nicholas could sit but only if we sat him up.  Nicholas now sits up alone and is now even pulling to stand on furniture or his crib.

Nicholas has low tone and had a difficult time bringing his hands together before.  He is now clapping his hands, picking up and throwing toys, and lifting objects over his head during play time.

Nicholas has also started communicating with us.  He definitely knows the word no and how to use it.  Nicholas does not say no, but does shake his head to let us know how he feels about something.  He loves to play in the tub and will shake his head to let us know he is not finished playing.  If he is on the floor playing and we pick him up, he will shake his head to let us know to put him down.   Nicholas will also wave bye bye when he hears the words.  Verbally, he says Dada and understands he is calling for his Dad.  He also says Mamá (in Spanish) for Mom. Yeah! He will also repeat NaNa which he uses for his sitter.  Nicholas will repeat sounds that we make and focus on words we are saying. 

Nicholas started crawling (not commando style) about a month ago.  During his first couple of days, he would stay in a general area.  Now, he will crawl out of his room and into every room of the house especially his older brother’s room.

Nicholas has become very social and has developed a little personality that we had not seen before.  We are having so much fun with our little one and are ecstatic with the protocol and the advances Nicholas has made. 

Nicholas weighs 24lbs and he is on the following items of the protocol:

Ginkgo   120 mg; PC  1 tsp.; Balance Oil  1 tsp.; B-12  250mg; Folinic Acid 200mcg

There is so much more and I could go on for hours! 

Elizabeth 

Nickolas' mom

Dylan's Testimony

Ivy's Testimony

Nicklaus' Testimony

Lauren's Testimony

Ava's Testimony

Peter's Testimony

Joey's Testimony

Matthew's Testimony

Avery G.'s Testimony

Avery H.'s Testimony

This is 6 year old Mac .  His mother, Lexy, found out about CMF from google.  She came to the conference this past July with her mother and they were both very excited to get back home and start Mac on the protocol.  They have seen some major changes in Mac and are excited to share this information with the DS community in their town.  According to Lexy, Mac went from using 1 word to communicate before the protocol, to using 3 and 4 word sentences. Mac is keeping up with his first grade classmates in learning his spelling words - 6 words a week!  Last year it took him 2 weeks to learn  one sight word!!  He is acknowledging when people speak and saying hi, asking questions and initiating conversation. "He is engaged now, has better eye contact, he is just here with us!" says his mom.  He is playing and interacting with his friends at school, a skill he used to have and lost during his regression the last 2 years. Mac can dress and undress himself, which he could not do before the protocol. His language continues to improve.  He is saying words and phrases that he has never said before.....like "It's Griffin's turn", "Mom, put me to bed please", "Turn computer off", or when choosing something he says "How about that one".  Mac takes Prozac (started June 1st, 5mg), Ginkgo Biloba (started Aug. 1st, 160mg), and Body Bio Balanced Oil (started end of Aug. 1tsp).  They will be adding the PC soon.  Mac is 43" tall and weighs 48 lbs.

Video of Mac reading a book !!

News Coverage of Mac and CMF

We can't be more thrilled at how our daughter, Katie, has responded to the protocol!

In May, 2009, Katie was declining academically in second grade and her negative behaviors were increasing in both frequency and severity.  As parents and teachers we tried everything to help Katie improve in any way possible.  This was very difficult given Katie has ranked within the upper 5% of children with DS in most areas.  Her private therapists and pediatrician also noted the increase in difficulties with her.

Thankfully, the  Changing Minds DVD was loaned to us from a therapist via another DS parent.  Following this, I traveled to Columbus, Ohio to meet with parents of other children on the protocol and was thrilled to hear their successes.

In July, 2009 we started Katie on the protocol.  Beginning the first 2 weeks with just the minerals: (based on her weight 62lbs)

Gingko Biloba (3x60mg pill)

B12/B6 1 pill

folic acid (400 mcg)

multivitamin and extra Vit. C

Currently taking synthroid due to hyperthyroidism

We saw NO side effects at all.

2 weeks later, we added:

Prozac (5 mg)

phosphatidylcholine 2 pills/day

body bio balanced oil 4 pills/day

Prior to school starting, we began Ritalin due to indications for behavior (7.5 mg/ 2x day)

Miracle Changes:

We didn't tell anyone about Katie's protocol other than her physician. 

On her first week of school - she did GREAT.  The first night we did homework - she took 3 full pages of homework to her desk and insisted on doing it all by herself.  After a little time, we helped her, without a struggle (typical for all last year) and she finished all 3 pages in 20 minutes - record time with a smile on her face!  We couldn't believe it!  One month into school, the principal called me and asked what was going on with Katie - she was like a new kid!  All the teachers and aides also saw a huge improvement in Katie and truly couldn't believe it!  Even Katie's pediatrician noticed a remarkable change in her behavior and calmness just 3 months into the protocol!

Since then, just a few setbacks.   Bad behavior was seen around January, 2010 and we figured out that she'd gained 10% of her body weight and we never increased the med's.  After 1 month of increased Ritalin and Prozac (1/2 tabs each) she was back on track.  Noted increased behavior problems 2 weeks ago and increased Ritalin by 1/2 tab again and within days back on track and doing well in school.

Overall - Katie has improved by nearly a year and a half of second grade schooling from last year.  She now is playing at other friend's houses - which she could never do prior to the protocol.  She's also continuing dance and cheerleading with typical girls all because of the protocol!  We can't say enough good things about it!

We're more than happy to share Katie's story with anyone interested in listening.  Even Katie's little friend with DS, Ellie, has now been on the protocol after seeing Katie's positive changes and she's making great strides too.

Julia -- Katie's mom

Watch Katie's video

News Coverage of Katie and CMF