Top 4 Evaluations a Baby with Down Syndrome Needs!

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collage Lila collage Baylee From parks to grocery stores,these little faces are everywhere!  With 1 in every 691 babies in the United States born with Down Syndrome, chances are you come in contact with a person with Down Syndrome.  As more research is done, this 400,000 plus population is becoming more self sufficient and we are learning their possibilities are endless! So as a parent, how do you help your baby with Down Syndrome have a chance to excel and use all of their potential?  We recently had the opportunity to shadow one of our very own at the Palmetto Health Down Syndrome Clinic – Columbia.

While you may be referred by your physician to the clinic, it is important to know every child with Down Syndrome should receive three very important evaluations as soon as possible.  If your community does not have a clinic like the one described here, you can create your own team of therapists and gain the information critical for not only optimizing your baby’s development, but maintaining necessary reflexes and skills.

Here's Steven as happy as can be in his stroller!

Here’s Steven as happy as can be in his stroller!

This clinic is set up in a round robin fashion.  Each family has an opportunity with each specialist and every 20 minutes rotate to another until each family has had an opportunity to meet with each specialist for an evaluation and specific recommendations for further tests and therapy plans are created.  On this particular day, our client was happy and oh so spunky! Here’s Steven, 2 years old, waiting his turn to meet with the Geneticist from Greenwood Genetics Clinic. Steven and his family met Dr. E.J. Prijoles and were able to ask any question they had about Down Syndrome.  Gathering information from knowledgeable professionals about development and issues related to this particular population is empowering.  Since this was their second time, basic information was not necessary, but they were able to ask about current research and find out of any findings were relevant to Steven.

 

Second, Steven went to be evaluated by the Occupational Therapist, of Rehabilitative Care Center. The OT’s generally watch the child play with small toys and evaluate their fine motor skills as well as how well they sit up and use their upper body.  They may refer you to have an occupational evaluation or a sensory evaluation.  Each of these areas are very important to your baby using their hands and trunk appropriately so they begin to play with toys and puzzles and later have the muscle strength to self-feed and eventually to write! Steven already has an Occupational Therapist but mom was interested to hear what they thought of his Sensory Integration and what they would recommend additionally in this area.  Both of the OT’s confirmed he seemed to have sensory aversions to soft items, and because of his low tone probably would benefit from deep pressure for ultimate proprioceptive input.  (The body’s ability to know where it is in space.)  A sensory motor screening can be done, but they confirmed an ongoing relationship with an OT who is trained in this area is best as they are always doing diagnostic assessments through therapy sessions.  OT’s are able to make better recommendations and work with the team assembled for your child.

It takes a team to this right!

It takes a team to do this right!

Next Steven headed over to meet Ms. Bethany Clark, the Physical Therapist with Rehabilitative Care Center.  Bethany is young but passionate about helping families with children who are challenged.  She quickly got busy evaluating Steven’s skills to determine why he isn’t doing more crawling and walking yet.  His Physical therapist has been seeing him two times a week and he has had steady progress, but before one years of age, enjoyed taking it all in and was not very actively engaged motor wise.  After looking at Steven’s skills and how he ambulates, Bethany recommended some type of trunk support system.  A Thera Tog or a Spio suit is designed to give support, stability and tactile stimulation for children who need a little boost in this area.  These suits are available online or locally at Brace & Boot.  It is our hope that with this type of steady input and stability, Physical Therapy will be more productive and Steven will begin to crawl and walk more and more over the next 6 months.  It is important to note that many toddlers with Down Syndrome learn to walk without a product of this kind.  Even still, other children who have had access to these suits have not seen any benefit through them.  Therefore it is important that the team continue to work to explore every possible strategy to encourage physical skills.

 

Finally, the last therapist to evaluate Steven was Ms. Mandi Madden who is a Pediatric Speech Language Pathologist with Rehabilitative Care Center.  Mandi specializes in feeding disorders and is a wealth of information for therapists like ourselves.  It is important that you seek an evaluation as early as possible by a SLP who specializes in feeding and oral motor skills if you have a baby who has Down Syndrome.  There are many reflexes and skills a qualified therapist can identify and help you maintain as they continue to grow and develop that first year.  While babies are not the same, the low tone, tongue protrusion, GI issues are common with toddlers who have Down Syndrome.  Steven has had several swallow studies that determined he aspirates on liquids and has reflux.  With this knowledge and a first hand knowledge of what current therapy consists of, Mandi was able to give oral motor exercises as well as feeding tips for his SLP to try for continuing to tolerate textures and begin eating table foods.

 

Last stop was with Dr. Hawn, who is a Clinical Professor with the USC School of Medicine.  He was able to look over all the results from the team of therapist’s and discuss the findings with Steven’s mother.  As a result of the team’s evaluation, he also was able to give mom a prescription for a Spio suit and to have another scope done to look at Steven’s esophagus.  Each of these recommendations was a result of the team’s evaluation.  While most families participate in something like this clinic in the first year of their babies life, Steven’s mom chose to take advantage of the clinic again because he is growing and developing and she had areas of concern she felt might could be addressed with a separate set of eyes reviewing his case.  This ongoing ability to advocate for Steven and leave no “stone un-turned,” is what every parent of a child with special needs must be encouraged to do.

 

Steven’s team welcomed the recommendations and is actively implementing new strategies for his benefit! It is our desire that you will find this information useful and seek to take advantage of the Down Syndrome Clinic here in Columbia, South Carolina or find one in your area.

 

Program note:  This clinic, beginning in June 2014, is evaluating only children who do not already have services in place.  The OT, PT and Speech Evaluations are now done at the Rehabilitative Care Center and the doctor’s evaluation is done on a separate day for billing purposes.

 

The Adventures of a Toddler with LCA: Lebra Congenital Amaurosis

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titleMany parents are forced to deal with their feelings, questions and concerns when they realize their baby or toddler has delays in development.  Listen to some of the questions Lena Amick had after learning her son Hunter had LCA or Lebra Congenital Amaurosis.  “I’m not sure how I felt … the first thing I thought about was if he will be able to go to regular school and make friends? Will he ever go hunting with his daddy?  Will he ever be able to make it out in the world when im not around?”  Such normal things we want for our children but yet when given the information your son has a rare (1 in 80,000) gene mutation that causes loss of vision at birth, we often don’t know what to do.  Lena did what most  mom’s do…reach out for help!

Because Hunter wasn’t walking, he qualified for Physical therapy with Sprout Pediatrics.  After being evaluated by Rhyno, our lead Physical Therapist, goals were written and Jessica Snipes, our Physical Therapy Assistant, began working with him.  Jessica shares, “at first I read a lot! Then we decided our priority would be helping Hunter capable of getting around in his environment.  Once Hunter had several months of PT and had learned to walk, do steps, etc we asked his EI to bring on a mobility instructor to introduce him to a cane.  It has taken some time and lots of creativity but he is starting to use it more.”

Hunter mastering steps!

Hunter mastering steps!

During therapy they would practice just walking around outside.  Giving him opportunities to learn how the ground changes, has holes and little  hills.  Jessica began to see how the cane could be used to help him explore and discover what he was near.  Jessica shares, “It is helpful for him to learn different sounds of things such as the difference of the sound of a wooden ramp vs a cement porch or brick step.  We have even started playing “hide and seek” with his cane so that he knows how to find something by sound.  I read a lot of research about how to train a child to use a cane but it also just takes a lot of repetition. His mobility instructor is training him a lot too.”

As many know, therapy is not just the hour one spends with the therapist, but the carry over practice that the family and caregiver’s do all week long that increases progress dramatically.  Hunter’s mom, Lena, is doing a great job practicing everything asked of her and every week she asks “what’s our homework this week?!” Lena shares her greatest joy has been “our PTA Jessica! Because of her, Hunter can walk, climb hills and do whatever he wants! If he didn’t have someone who truly cares, he definitely would not have come so far so quickly!”  Hunter is an explorer and confident in his abilities as just the other day he opened the door and headed outside without his mom even knowing! While he needs to be safe, it is exciting that he is independently functioning in and around his home.

Hunter heads outside down the ramp independently.

Hunter heads outside down the ramp independently.

Clearly it takes a team of professionals that deliver the total package, but Sprout Pediatrics exists to do exactly what Hunter and his family have experienced.  A caring team that pushes, encourages, researches and challenges! Both his parents are very happy with Hunters progress and are hopeful that one day Hunter will be able to see but for now they are doing a great job helping him explore his environment with touch and sound!

Below is a helpful guide to helping children with low vision.

Guide to Understanding more about helping Young Children with Low Vision