Almost every baby born with T21 will face several common issues. The most critical are oxygen deprivation due to sleep apnea, and hypotonia (low muscle tone). Early and aggressive intervention maximizes a child’s potential by combatting the challenges presented by the condition. Designed as a day-one document, formula21 helps families first understand what are the basic issues they need to overcome, and how to tackle them. Each of the identified issues and their related therapies can be woven into daily routines, playtime and normal loving time spent as with any baby.

Sleep apnea is not common in typical children but has an alarmingly high rate of occurrence in babies with T21. Studies conducted by Professor Sally Shott, MD report a 50-100% incidence of this problem in overall age ranges and detection as early as within the first few months of life. Parents and carers absolutely must ask their pediatricians for early testing and continue throughout childhood and adulthood. It is extremely difficult if at all possible for parents to detect obstructive sleep apnea at home. Snoring may or may not present as a symptom due to a variety of predisposed factors from anatomic variances, and smaller airway sizes are a predominant contributor overall. The good news is once detected, the source of the sleep obstruction can be addressed, the most common being tonsil or adenoid adjustment. To reduce contributing factors directly due to global low tone, oral motor, occupational and physical therapies early are definitely pivotal. In summary early detection through an overnight sleep apnea test and continued testing is key.

Hypotonia manifests in several ways ranging from sensory deficit, to gross motor and fine motor control. The body's most heavily concentrated zone for fine motor skills is in the mouth, therefore addressing oral motor skills development early is equally important. Sensory deficiency is addressed through proprioceptor stimulation, massage and skin surface wake-up. Occupational and physical therapists can provide parents and carers with integrated exercises and techniques with sleeping eating bathing and play routines, that can be easy and fun.

formula21 lists five basic components, very common in almost every baby born with T21.

1. Oxygen Loss
2. Hypotonia
3. Oral Motors Skills
4. Sensory Wake Up
5. Nutrition

Oxygen Loss

Hypotonia

Oral Motors Skills

Sensory Wake Up

Nutrition

National Down Syndrome Congress (NDSC)

GiGi’s Playhouse

KellyDorfman.com

Down Syndrome Association of Atlanta (DSAA)

Myofunctional Inst.’s

A sleep study is needed early in the life of a child with T21.

Sleep apnea has an effect on a child’s cognitive ability, behavior, growth rate, and heart issues. Since children with T21 are more likely to have heart problems from birth and are more likely to have sleep apnea, this combination can lead to severe complications. Unfortunately, it is very difficult for parents to accurately determine sleep abnormalities in their children with T21. Professor Sally Shot, MD conducted clinical studies which successfully led to the American Academy of Pediatrics to lower recommendations for earlier testing for sleep apnea to age three. Although a huge achievement, it has been proven to appear in as early as the first few months of life. This, coupled with the critical brain development which occurs in the first three years Families and cares are strongly urged to begin testing and to continue testing and overnight sleep studies from six months onward. A parent should have a short checklist with them when asking their pediatrician to prescribe sleep studies:

Issue 1

Over 80% + of Children with T21 test positive for sleep apnea over all. Included in this statistic is an alarming percentage of infants and toddlers.

Issue 2

Brain development between birth and three years of age is unanimously agreed as the most crucial in a human life. If a child suffers sleep apnea during this critical time, their brain is starved of oxygen hundreds of times during a regular night’s sleep, hence hindering normal healthy brain development.

Issue 3

Most families place their faith in the advice of their pediatrician. The country’s pediatrics governing body has not yet advised testing to begin early enough. Therefore families are usually told that the test is probably not necessary.

Issue 4

A large percentage of small children with T21 are unable to snore. And without audible snoring, tossing and turning, or other extremely restless symptoms sleep apnea is virtually undetectable without a fully excluded sleep study in a sleep clinic. With or without symptoms the condition can exist and accelerate cognitive delay.

TILT - Tongue In, Lips Together

Coupling oral motor skills to address issues with introductions to words and communication

The fundamental goal in building or a motor skills is to correct and instruct the tongue. Simply put, the tongue must reside inside the mouth and the lips must remain together, even during sleep. When basic oral motor skills exercises begin early and aggressively, babies born with T21 grow to eat to breathe and to speak with clarity and control.

Benefits

Breathe.....Speak.....Eat

Within the first critical 10 months of life, the shape of the mouth and hence positioning of the tongue can be changed, profoundly changing a baby’s future communication abilities, social interactions, and digestive health, not to mention healthy breathing. A baby born with T21 has an abnormally high arch in the roof of the mouth. Most commonly they also have an obstructive tongue (which also has a detrimental flacid quality due to low tone). Curiously the tongue size is usually normal in measurement, but cannot fit comfortably within the overly arched cavity of the mouth causing the obstructive characteristic. But by engaging early and aggressively in a grouping of oral motor skills and techniques involving stimulation, tongue-reflex building, and mouth massaging, this can be greatly improved or near totally corrected. A qualified speech and language pathologist can work in concert with aggressive oral motor skills to help to encourage the beginning formations of speech centric sounds. But specific to the critical oral motor skills needs therapy involves daily massaging of the roof of the mouth, tongue stimulation techniques, and mouth/sensory wake up of both the interior and exterior of the babies mouth. A qualified therapist must guide parents to teach them the proper techniques to be done daily during those first critical months.

Although this may appear to be overwhelming, interactions with a baby are 24 hours per day and can easily incorporate these ultra important exercises, into feedings or otherwise playful periods in a day.

Strengthen the entire respiratory system

With the help of physical therapy and building core strength, a child is able to sit up straight. It sounds overly simple, but sitting up straight is integral to proper oral motor skills development. Conversely with slouching comes a dropped, open mouth. Mouth breathing is the enemy to healthy air intake by preventimg the body from breathing through the nose (to clean and warm the air that goes into our bodies). Building upon the earliest skills will lead to higher levels of strength and endurance for continued exercise and greater respiratory stamina throughout a lifetime. Physical therapy is therefore integral to mouth control.

Reduction in chronic chest infection

Breathing through the nose warms and cleanses air intake, affording the body to be much less vulnerable to chronic chest and sinus infections. The three components of the respiratory system (being the airways, the lungs, and respiratory muscles) work in concert for efficient air and oxygen intake. With improved posture, tongue position and ultimately nose breathing the sinus cavity engages and is much more likely to develop and grow versus remain in a sinking position (which further prevents healthy air passage).