The Preemie Growth Project

Sharing Vital Information About Nutritional Issues for Premature Babies & Special Needs Children


Crucial Case #5 (Cerebral Palsy in Diamorphic Twin)

1 year, 9 months, 38 week (5 lb) Identical (Diamorphic) Twin Boy

Mom Report Before Starting

My son, Andrew* (Baby B) is an identical twin. His brother, Baby A is considered advanced and thriving.  Andrew, on the other hand has been delayed since about 5 months old.  He was diagnosed at 18 months old with Mild Cerebral Palsy and Sensory Processing Disorder.

From 9 months of age on up to present date Andrew has been receiving Occupational, Physical and Speech therapy.  He has leg braces, gait trainer and stander.

Andrew’s Neuromuscular Level before beginning the Preemie Growth Project on 12/3/2012 (21 months)

  • Mild Cerebral Palsy
    • Developmental Delay
      • He cannot wave
      • Not standing alone
      • Not walking
      • Very late crawler @ 15 months old
      • He can say few sounds (mama, dada, fa-bah (football), baba (drink), papa(food)
      • However Andrew was the first baby to smile (2 weeks) and roll over (3 months)
      • He can clap
      • He knows a couple of signs “food” and “more”
      • He plays peek a boo
      • He knows the phone goes to the ear
    • Abnormal muscle tone and spasticity
      • Tip toe gait when attempting to walk/pulling up on furniture
      • When he crawls he keeps his right hand balled up in a fist
      • Low tone in his trunk, neck, and face
        • Always has been under the growth chart for weight
        • Reflux
        • He can only side sit propped by an arm
        • His head lags tilted back
        • His mouth stays opened and his tongue hangs out
        • He slobbers a lot
      • Vision Problems
        • Diagnosed with Strabismus at 9 months old
      • Hearing Issues (low tolerance for noise)
        • Took 3 new born hearing tests and finally got a pass due to fluid in his ears
        • Took another hearing exam and not pass in the left ear due to fluid in both ears
      • Sensory Processing Disorder
      • My infant/toddler has problems eating. He chokes a lot. I have to mash his meals.
      • My infant/toddler has trouble falling asleep or staying asleep.
      • My infant/toddler rarely plays with toys, especially those requiring dexterity.
      • My infant/toddler has difficulty shifting focus from one object/activity to another.
      • My infant/toddler does not notice pain and is slow to respond when hurt.
      • My infant/toddler cannot calm himself by sucking on a pacifier, looking at toys, or listening to my voice.
      • My infant/toddler has a “floppy” body, bumps into things and has no balance.
      • My infant/toddler does little or no babbling, vocalizing.
      • My infant/toddler is easily startled.
      • My infant/toddler is extremely active and is constantly moving body/limbs or runs endlessly.
      • My infant/toddler seems to be delayed in crawling, standing, walking or running.

In my own words:

Tone/Strength: His tone is considered floppy in his core area, neck, and face but very tight in his limbs (arms and legs). He keeps his fists balled up and his ankles extended. He cannot sit unassisted.

Cognitive: His left eye goes in toward his nose when focusing on something close up.

Speech/Communication: He is 21 months and cannot wave but can sign “food” and “more”. He can clap and can play peek-a-boo.

Energy: He has very low energy levels. When he wakes up, he has about 2 hours before whining and feeling completely exhausted.

Sensory: He chokes on his food periodically, depending on the textures. He has trouble soothing himself when tired or sleepy. He rarely plays with toys. He has difficulty shifting focus from one activity to another. He doesn’t notice pain and is slow to respond when he’s hurt. He is easily startled. He was very delayed in crawling. He still cannot stand or walk.

My Observations: Andrew is very sweet and loving. His mood will go from 0-10 due to being tired or if the noise level is uncomfortable to him. I cannot leave his sight or else he screams bloody murder.

 

Andrew’s Neuromuscular notable changes after starting the Preemie Growth Project on 12/3/2012

Dec 14,2012 – 11 days into starting the minerals

Weight Change: Yes!!! 1 ENTIRE POUND!!!!!!

Appetite Change: Yes!!! He’s always been a really good eater but his appetite has picked up even more. Ex: He went from eating 1 pancake to eating 2 pancakes and from eating 1/2 a cup of applesauce to eating the entire cup. It was like it would tire him out to eat but now he stays engaged the entire time so he’s eating more. I’m so HAPPY!!

Bowel Change: Yes!!! He’s going a lot more frequent. He goes about 45 min after he drinks the supplement (w/apple juice) and then about 2-3 more times but it’s not much and it doesn’t smell really.
Tone/Strength Change: Yes!!! He can now sit unassisted!!!!! This is from his core being strengthened. He can also bare all of his weight on his legs and still stand flat footed (I’m giving him his balance by pressing a hand on his back). Before taking the supplement he would tip toe and bare his weight on his calf muscle and lean his tummy on the sofa or whatever he was pulling up on. This is a huge improvement! Again, very pleased!! :)

Cognitive Change: Yes!!! Before taking the supplement I would lay Andrew’s food out on his tray and he would grasp the food without looking at it. Now he looks down, grades his hand to pick up the food and watches as it meets his mouth. He also will follow a cartoon program on TV for about 2 minutes whereas before he wouldn’t even look at the television. And he mimics the sounds of his twin brother and 9 year old sister.

Speech/Communication Change: Yes!!! He makes a ton of new sounds. His new favorites are “gahrrr” , “ehhhh”, “ahhh am am am” and “ah der der”. Whereas before he would only say “bah bah” and “mah mah”, before it was very basic and repetitive. Now I’m hearing some new stuff, love it!

Energy Change: Yes!!! He now stays up all day except for one 2-3 hour nap. He still whines but not nearly as much.

Sensory Change: Yes!!! He is now okay with me leaving the room, he can now fall asleep in the carseat on his own (he normally would scream and cry the entire ride if he got sleepy), he plays with toys (he use to just put them to his tongue), and most importantly he let me cuddle him when he got upset today (he use to whine and arch his back when I cuddle him if he was already worked up.) I love this very much.

Parent Observations: With the supplement Andrew is showing significant improvement in all of the above areas. His therapists are so amazed at his progress. So far, I’m impressed.

Other Important Notes from Parents: He’s a little more motivated each day.

 

December 31, 2012 – 28 days into starting the minerals

Weight Change: No

Appetite Change: No, His weight is sustained though, he hasn’t lost any weight!! He’s still eating ALL day but no increase.

Bowel Change: Yes!!! He poops after every meal (it doesn’t stink). I think he may be close to getting toilet trained! :)

Tone/Strength Change: Yes!!! He sits unassisted ALL the time now. He just learned this last week and now he prefers this all the time. He even drinks sitting up holding on with both hands completely unassisted. He can also stand flat footed when I press down on his legs while standing (whereas before his ankles were locked up.)

Cognitive Change: Yes!!! He now watches cartoons. He understands when I tell him no and even knows how to make a sad face when he doesn’t get his way.

Speech/Communication Change: Yes!!! He’s making lots of new sounds and still mimics his twin brother and sister.

Energy Change: Yes!!! He can stay up past 6:00 pm and he’s getting better about whining.

Sensory Change: Yes!!! He is now okay with us checking out at the grocery store. (He would scream when I walked 2 feet away to the register and yesterday he just sat in his seat!!! What a relief!

Parent Observations: My boy is changing right before my eyes. I’m so thankful. The little things matter so much.

 

Jan 15, 2013 – 43 days into starting the minerals

Weight Change: Yes!!! Andrew has GAINED 2 POUNDS TOTAL!!!!!!!

Appetite Change: YES!!! His appetite has picked up again. He now crawls to his highchair and signs “food” to me. I’m in complete AWWW! I love it!! His drinking has increased also.

Bowel Change: Yes!!! His diapers are very stinky now for some reason. Maybe he’s detoxing and replacing that with nutrients helping him gain and sustain his weight. He’s pooping after every meal still.

Tone/Strength Change: Yes!!! He is so much stronger these days. His twin brother pushes him off toys and usually he will fall to the side but lately he’s been holding himself up and hitting back! I am very proud of him, as strange as that may sound. (Laughing.)

Cognitive Change: Yes!!! Andrew can now blow kisses!! My mom taught him how to do this. Oh and he now waves!! It’s not a perfect but it will get there.

Speech/Communication Change: Yes!!! He is babbling a lot more. He mimics sounds we say like “hi”, he thinks it’s just a sound not just a word. (I’m so thrilled!) He tells me “hi” all day long.

Energy Change: Yes!!!!! This area I see a lot of improvement. He NO LONGER WHINES!! He stays up until whenever I put him and his brother to bed. It used to be that he couldn’t stay up past 6:00p or else our ears would pay for it (lots of screaming). Now he just hangs out and plays until we tuck him in.

Sensory Change: Yes!!! He is okay with loud noise. He actually screams whenever I chase him and his brother around the house. He never liked screaming; now that’s how he likes to express excitement.

Parent Observations: I am so happy we started the minerals. Andrew is still showing amazing improvement. I couldn’t be happier.

POST PROJECT:

At 11 Months Supplementation: In November 2013 Andrew had a 2 hour eye exam and was no longer a candidate for the Strabismus surgery.

At 15 Months Supplementation: In March of 2014 Andrew passed his hearing exam in both ears within 3 minutes.

At 17 Months Supplementation: In May 2014 Andrew’s teacher at his public school informed me Andrew spoon feeds himself and drinks perfectly out of an open cup. (No more Sippy cups.)

At 22 Months Supplementation: In October 2014 Andrew kicked his walker to the curb, he is now walking unassisted. Andrew can speak in 2 word phrases. Ex: “Mama outside?” “Mama Eat?” “I love-you-too”

 

I am extremely pleased and I would recommend the minerals.

 

*Not his real name