Overview of health issues for people with Down syndrome

I am following the wishes of the NDSC (from their Facebook page) and passing on some of the information that we got from the NDSC conference last summer in San Antonio, TX.  This was a workshop called "Keeping Children and Adolescents with Down syndrome Healthy" by Dr. Brian Skotko.

Disclaimer:  Just because these issues are listed does not mean that every child with Down syndrome will have them. 

Vision:  60% of children with Down syndrome have some type of eye condition.

The issues that could exist are

*nearsightedness, farsightedness, astigmatism:  treated by wearing glasses
* nystagmus:   "involuntary eye movement which usually results in some degree of visual loss" according the website that I linked to. 
*strabismus:  "cross-eyed or wall-eyed, is a vision condition in which a person can not align both eyes simultaneously under normal conditions" according the linked site.  It is treated by putting dilating drops or patching the good eye in order to allow the other eye to strengthen.
*cataracts:  "cloudy area in the lens of the eye. The lens should be clear, in order to focus images properly. If the cataract is large or dense enough, it can cause blurry vision or block vision"  according to the Children's Hospital of Boston.  It is treated surgically.
*lacrimal duct obstruction:  blocked tear ducts, according to me.  Many babies, including Kamdyn as a baby, have watery eyes that have some discharge.  You treat it by placing a warm compress on the eye.  In cases where it does not clear up on its own, it will require surgery.

Thyroid:  15% of children with Down syndrome have a thyroid issue.

There is hypothyroidism and hyperthyroidism.  The symptoms of these can be:  tired, sluggish, constipation, unusually cold, hyperactive, sweating, restless, diarrhea, and behavior problems.

Dr. Skotko recommended a child with Down syndrome being tested at birth, 6 months, 1 year, and then annually after that.  He suggested that FT4 and TSH levels be tested.

Celiac Disease: 5% of children with Down syndrome will present with Celiac Disease.

The symptoms of Celiac are diarrhea, constipation, bloating, behavioral problems (due to being uncomfortable), vomiting, abdominal pain.  Kamdyn had the blood screen at one year old, and it came back normal.  If the blood test comes back abnormal, the next step is a stomach biopsy.  The biopsy will give absolute results, while the blood work does not.  Celiac is treated by placing the child on a 100% gluten-free diet.

constipation:

Dr. Skotko also stressed not dismissing constipation.  I will admit that I was one of these people who thought of constipation as no big deal.  Severe constipation can become very uncomfortable for the child, causing behavioral issues and become severe enough that the stool becomes impacted, requiring surgery.  Mild constipation can be treated by simply bulking up the fiber-y foods or giving over the counter Benefiber.  There are several medications that are available for more severe constipation.  We are Miralax people.  It works.  I love it.  Kamdyn loves it.  It's wonderful.

Other Gastrointestinal Tract conditions can be found here.

Obstructive Sleep Apnea:  up to 75% of children with Down syndrome have it.

A list of questions to ask yourself in determining if your child may have sleep apnea
Does your child snore at night?
Does your child gasp, choke, snort during sleep?
Does your child fall asleep on short drives?  at school?
Does your child need to nap in an age-inappropriate way?
Does your child not seem refreshed during the day?

In order to determine if your child has sleep apnea, a sleep study will have to be performed.  In a sleep study, the child is monitored closely by a professional during a full night's sleep.  Sleep apnea is treated by medicine, tonsil or adenoid removal, or wearing a CPAP machine while sleeping. Here's one more site.
Dr. Skotko also recommended that a child with Down syndrome have a sleep study done by 4 years of age.

Dry skin:  recommended using Cera Ve moisturizer.  You can get it at Rite-Aid, CVS, etc.

Atlantoaxial Instability and Occipitoaxial Instability: increased flexibility between the bones of the neck.  The NDSC says that 13-14% of individuals with Down syndrome show evidence of instability, while only 1-2% have symptoms that require surgery .

Symptoms are "neck pain or persistent head tilt, intermittent or progressive weakness, changes in gait pattern or loss of motor skills, loss of bowel or bladder control, increased muscle tone in the legs, or changes in sensation in the hands and feet".(from NDSC)

A child can be x-rayed at age 3 to check for this condition. It is believed that testing done earlier than 3 is not conclusive.

Seizures:  8% who are less than a year old or older than 30.
Disorders are:  Infantile Spasms, partial seizures, and generalized tonic-clonic seizures

Hip Dysplasia/Dislocation:  1-4% of children, ages 2-10, will have an orthopedic hip issue.  Check out the link for more information.

Leukemia:  less than 1% of children with Down syndrome present with leukemia.  I think this is a dreaded one for any parent to think about.  Most cases occur under the age of 6.  I have read that for some reason, children with Down syndrome respond better to the treatment when compared to the typical population. 

Diabetes:  less than 2% of children with Down syndrome have diabetes.

Of those 2%, 75% of them have type 1 diabetes, which require insulin injections.  The other 25% have type 2 diabetes, which can be controlled with other medications.

Symptoms of type 1 are: 

Increased thirst

Increased urination

Constant hunger

Weight loss

Blurred vision

Feeling very tired

Symptoms of type 2 are:

Feeling tired

Thirst

Nausea

Frequent urination

Slow healing of cuts and scrapes

oral health conditions:  many children with Down syndrome have some type of dental issue.  These include:  late eruption of teeth, missing baby teeth, cavities, malocclusions, periodontal disease.

And while this one was not included in the workshop, I would feel remiss if it was not mentioned:

Heart defects: 40-50% of children with Down syndrome will have a heart defect.  These can include,

Atrioventricular canal defect, Ventricular septal defect, Secundum atrial septal defect, Patent ductus arteriosus, Tetralogy of Fallot  PediatricHeartSpecialists.com gives a list of heart defects, an explanation, and picture of each defect.  Many children who have a heart defect require surgical repair.  Some defects, however, may close on their own.  Kamdyn has a large VSD and a small ASD, and so far, she does not need surgery. 

Like I said in the beginning, just because something is on this list, it doesn't mean that every child with Down syndrome will have them, and certainly not all of them.  As I go down the list, I can put Kamdyn under 4 of them:  constipation, late eruption of teeth, heart defect, and absolute fabulousness, oh wait, that wasn't one.  Ok, so 3 it is.  But she's still fabulous.  And if you landed here via google, I suggest you poke around here a little more and find out just how fabulous she is : )


Just a little side note:  Have you seen that video on youtube, where the Dad is talking about his daughter, who has Down syndrome and also a heart defect.  Then he says that over the months, he has come to learn that the hole in her heart is where they pore the love in.  I think it may be true ; )