Pediatric Archives - West Texas Rehab

Down Syndrome Explained: Rocking an Extra Chromosome

Down syndrome is a genetic disorder caused when abnormal cell division results in extra genetic material from chromosome 21. Instead of the typical 46 chromosomes, people with Down syndrome have 47 chromosomes. Having an extra chromosome changes brain and body development resulting in physical and cognitive differences. 

There are three different types of Down syndrome

  1. Trisomy 21 is the most common and accounts for 95% of the cases. It is caused by an extra copy of chromosome 21. 
  2. Mosaic is when there is a mixture of cells with the normal 46 chromosomes and those with 47 that have an extra chromosome 21. 
  3. Translocation is when there are the normal 46 chromosomes but then an extra copy of chromosome 21 attaches to another chromosome; usually chromosome 14.

 

Common characteristics: 

While characteristics vary from person to person, these are some of the most common:

Physical Features Cognitive/Social Features Developmental Delays
  • A flattened face, especially the bridge of the nose
  • Almond-shaped eyes that slant up
  • A short neck, fingers, and toes
  • Small ears
  • Short attention span
  • Poor judgment
  • Impulsive behavior
  • Slower learning
  • Delayed language and speech development
  • Gross motor skills
  • Fine motor skills
  • Speech and language skills

Myths vs. Facts

Myths  Facts 
Down syndrome is a rare disorder. 

Most children with Down syndrome are born to older parents.

All children with Down syndrome have a severe cognitive disability.

People with Down syndrome cannot be active members of society.

It is the most commonly occurring chromosomal condition. Approximately 1 out of 772 babies in the United States are born with Down syndrome.

More children with Down syndrome are born to parents younger than 35 but the likelihood of having a baby with Down syndrome increases with age. 

Most people with Down syndrome have a mild to moderate cognitive or intellectual disability.

People with Down syndrome participate in a wide range of activities in their communities.  

 

What can I do to help? 

Talk to your child’s pediatrician about services, equipment, and community resources in your area for support as they learn new skills.  Examples that may be appropriate:

 

Healthcare Equipment/Devices Community Resources
  • Medical Specialists
    • Pediatrics, Orthopedics, Neurology, Genetics, and others as appropriate
  • ECI (Early Childhood Intervention, 0-3 years)
  • Pediatric Outpatient 
    • Physical therapy, occupational therapy, and speech therapy
  • AAC (Augmented/Alternative Communication)
  • DME (Durable Medical Equipment)
    • Orthotics
    • Standing frame
    • Gait trainer
    • Walker 
  • Daycare settings for children with special needs
  • School-based therapy and accommodations
  • Adaptive Sports (Challenger League, etc.)
  • Upside Down Club of Abilene (or local chapter in your area)
    • Annual Buddy Walk event

 

Organizations and Websites that offer Support 

This website has resources and programs; education for parents as educators; supports for advocacy; an annual convention; and Down syndrome news stories and events. Each state also has various links to help at the state level. 

This website has resources and support by age and by topic. It also has help with advocacy and policy. 

This website offers resources, programs, research, and events specific to individuals with mosaic Down syndrome

This website offers resources and support, events, and even a shop for Down syndrome awareness 

This website has programs and resources for people with down syndrome and their families. These resources/programs include apps, a magazine, workshops, and podcasts. These resources are also available in Spanish. 

This website was created to help people with intellectual disabilities with advocacy and policy and helps to connect families with local agencies that can help with these areas. 

This website offers information about research and medical care; offers programs and events; advocacy; and news about people with Down syndrome. The foundation helps to fund the  Linda Crnic Institute for Down Syndrome which is committed to research and medical care for people with Down syndrome. 

This website offers resources, events, and personal stories for families in the Big Country area.

To learn more about all of the services we provide, click here.

What to Expect at your Child’s First Pediatric Therapy Evaluation

Your child’s pediatrician just sent a referral for a therapy evaluation.  Now what?  What does this mean? Do I need to do anything? These are all valid questions for a parent who has never had experience with the therapy world.  It can be confusing and overwhelming when you do not know what to expect.  Here is the process of an evaluation at the West Texas Rehab Center and what to expect at your child’s first evaluation.

  1. Why you are Bringing your Child to the West Texas Rehab Center78 

Your child’s pediatrician may tell you that they are sending a referral for a therapy evaluation.  Your pediatrician may do this after a parent voices concerns or observes concerns regarding their child’s development.  There are 3 different referrals that they send depending on  what your child may benefit from.  The 3 therapy services that we offer are:

  • Occupational Therapy– addresses fine motor skills, visual motor and perceptual skills, upper extremity and core strength, bilateral coordination,  developmental milestones, sensory integration, activities of daily living(dressing, brushing teeth, hygiene, etc.), feeding, and more!
  • Physical Therapy– addresses gross motor skills, functional mobility, pain, coordination, developmental milestones (sitting, crawling, walking, etc.), strength, balance, and more!
  • Speech-Language Therapy– addresses communication, expressive and receptive language, articulation, dysphagia, feeding, oral motor skills, and social skills.
                    1. Scheduling your appointment
  •  The doctor will send us the referral and once we receive it, our staff will call to schedule the initial evaluation on a day and time that works for you!
  1. Getting to the Rehab Center
  • We are located at 4601 Hartford St. in Abilene, and at 3001 S. Jackson St. in San Angelo.
  1. Admissions

Admissions is the first place that you will go for the initial evaluation.  In admissions the staff will need to gather specific information from you in order to establish you as a patient.  This includes demographic information, contact information, insurance, identification,  and a brief medical history.

  • Make sure that you bring:
    – proper identification
    – insurance cards
    – custody paperwork, etc. if the child has been placed with you
    – any other papers (psychological evaluations, IQ testing, etc.) that you feel are necessary for the therapist to know (if this has been completed)
  1. The Evaluation


The admissions staff will walk you back to the Pediatric Department after you complete the necessary paperwork.  At this time there are 1 of 2 things that you may start with.

If your child is having more than one discipline evaluate your child on that day, you may start by seeing Family Support Services.  They will gather a full medical history and see if there are any other services or supports that the child and/or family may benefit from.  If your child is only being evaluated by one discipline that day, the therapist will come get you from the waiting room to start!

During the evaluation, the therapist will go over why your child is having an evaluation, medical history, concerns that you may have and current skill level.  Be prepared to answer questions!  The therapist may also have you fill out questionnaires.  This is how therapists get a lot of their information needed to determine if therapy is going to be beneficial for your child.

The therapist will complete an assessment during that evaluation.  Depending on which service is evaluating and which concerns are present, these may be looking at developmental skills, measuring strength, range of motion, social skills, language skills, etc. It is beneficial for your child to wear clothes that they can move around in and to wear tennis shoes.

  1. Recommendations


At the end of the evaluation the therapist will either determine that your child requires additional therapy services or not.  This typically is seen as weekly services if they do recommend services.  The therapist will bring you up to the pediatric office secretary to make sure that your contact information is correct and your preferences of days/times for scheduling services.   The therapist will then write up a report with their findings. In this report they will write about assessment scores, recommendations for how many times they would like to see you, and establish goals to work on during therapy.

 

This is establishing the PLAN OF CARE (POC).  The POC is then sent to the doctor that sent the referral. The doctor will read the report and sign it if they are in agreement with the recommendations.  Once the doctor has signed the POC, the staff at the Rehab Center will request authorization for therapy visits if necessary. Once that happens, we can begin seeing your child on a regular basis as recommended by the therapist.  Our staff will contact you to set up an appointment time and establish when this will start.

If you feel like your child needs a therapy evaluation you can talk to their pediatrician to get a referral.  If you have questions pertaining to the West Texas Rehab Center please feel free to give us a call! Abilene: 325-793-3400    San Angelo: 325-223-6300

Pumping for the Working Mom

Pumping for the Working Mom

By: Anna Nguyen, M.S., CCC-SLP, CLC

Speech-Language Pathologist, Certified Lactation Counselor

Maternity leave coming to an end can trigger a lot of feelings: sadness to leave your baby, excitement to be back at your job, or anxiety about pumping. If you have been breastfeeding your baby for the last few weeks or months, you know the benefits of breastfeeding are worth the effort. Going back to work may mean you have to pump more than you previously did. Maybe you are an exclusive pumper who is used to pumping in the comfort of your home and have not had to worry about milk storage outside of the house. Either way, pumping and working can be a tricky transition.

A general rule of thumb for pumping when separated from your baby is to pump as often as your baby would eat. For a baby around 12 weeks old, that typically means you would need to pump 3 times during your 8:00-5:00 day. It can be easy to worry about supply, saving up, or having enough but all you need is enough for the next day’s bottles. A sample schedule may look like this:

7am: breastfeed baby at home

9/9:30am: pump

12/12:30pm: pump

3/3:30pm: pump

5/5:30pm: breastfeed

**This schedule is only a sample and may look different depending on the needs of you or your baby.

Breastmilk is safe to keep in a closed container in the work fridge. However, some parents prefer to keep their breastmilk in a more personal location or do not have access to a fridge. Other options can include a cooler bag with an ice pack or specially designed thermoses for breastmilk. Be aware that adding warm breastmilk to either a cooler with an ice pack or a thermos may change the temperature of the container as milk comes out at body temperature.

According to the Centers for Disease Control and Prevention (CDC), freshly pumped breastmilk is safe to stay at room temperature for a maximum of 4 hours, can stay in the fridge for up to 4 days, and in the freezer for up to 6 months for best retention of nutrients and 12 months for adequate retention of nutrients. Previously frozen breastmilk should be used within 1-2 hours of it being thawed, up to 24 hours in the fridge, and should NEVER be refrozen after it has been completely thawed. Once a bottle of milk has been given to a baby, the milk should be consumed within 2 hours or less due to bacterial growth that takes place when the milk touches saliva.

Breast pumps are not as efficient at removing milk as a baby and some mothers find difficulty with supply or achieving a letdown when pumping or when separated from their baby. Finding a quiet place at work away from your work to allow yourself to relax, looking at pictures or videos of your baby, or even bringing some of your baby’s clothes or blankets to smell while pumping can help with the hormonal production needed to achieve a letdown.

If you find yourself needing a more personalized schedule for pumping at work, exclusively pumping, or combination feeding your baby, contact me for an evaluation.

Anna Nguyen, M.S., CCC-SLP, CLC

Speech-Language Pathologist, Certified Lactation Counselor

anguyen@wtrc.com

Sensory Defensiveness and Anxiety

Usually when you think of sensory defensiveness we do not think of anxiety as a part of “sensory issues”. However, many times when children have difficulties with sensory modulation disorders, they will also have anxiety due to either over responding to sensory input.

When sensory integration is working…

A child can attend to tasks

Change routines without stress

Can tolerate touch, sounds and can listen

Tolerate transitions in activities

Tolerate most textures with feeding and touch

Tolerate movements

Tolerates most visual input as well as auditory

Can play, and vary types and intensities of sensory experiences.

Have the ability to conceptualize, organize, and execute non-habitual motor tasks (praxis)

Children with sensory modulation disorder may demonstrate behaviors appearing “over-responsive” or have a low threshold (takes little sensory input to set them off. Winnie Donn, Ph.D.,OTR, FAOTA). “These children can be fearful of movements, defensive to touch, certain textures, have feeding problems or be sensitive to sounds.  They appear to have anxiety, and can often have behavioral outcomes.

When a child is “under-responsive” or has a high threshold, it takes a lot of sensory input to achieve the ‘just right’ threshold.  These are the children that seek out sensory input, such as running, crashing, jumping, or have lack of attending.  They have a decreased awareness of tactile or auditory input (such as calling their name). These children can also have difficulties with emotional/behavioral regulation.  Some children can fluctuate between the two extremes.  Dunn, Winnie, 1999, The Psychological Corporation.

As a therapist working with toddlers or older children, learning strategies to deal with the sensory issues as well as the anxiety is paramount. Sometimes the anxiety can manifest into sensory issues.

Toddlers:

With toddlers there can be a wide array of sensory issues that can set them off.  I usually have parents start out by filling out the “Sensory Profile”, then as a therapist I want to know their likes and dislikes and will have the parents give a list of both. Again, working closely with parents so they may be successful at home, daycare, church or any environment that was challenging for the child.

I start out with a plan of heavy work activities that is suited for the child. Heavy work  is any type of activity that pushes or pulls against the body. Heavy work activities can help kids with sensory processing issues feel centered. Heavy work engages a sense called proprioception, or body awareness.  I also encourage parents to start working on this at home.

For Older children:

Again, we get them involved with heavy work as this is generally calming to most children in a high or escalated state.

We also work on self -awareness of the level of anxiety using charts (see below).  On this particular chart the levels are 1-5 with 1 being happy and 5 being “I feel Anxious!” or “I feel like hurting myself.”  We recognize some anxiety is healthy, however when it interferes with daily activities such as school work, relationships, performance in daily tasks at home it is no longer healthy.  I have children look at the chart 5 times throughout the day and read their levels, if they are getting to a level 3, 4, they need to address the anxiety before it gets out of control by performing heavy work activities, or favorite activities to calm them down.