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 ; )

Thunderstorms, special needs, and health issues, Oh my

First of all, Happy Memorial Day.  I hope you had some great watermelon today.

I feel foolish to admit this, but I have been pretty freaked out by thunderstorms lately.  I try to comfort Madison and Austin as the rain beats down, lightning flashes and thunder crashes, but really I'm scared too.  Before you think I am just being childish, which you still may, let me tell you why.  It has been a crazy season of thunderstorms and tornados lately.  We all know of the tornados that devestated the south, but we have also had more tornados than I can ever remember.  We have spent nights watching a doppler radar screen to see how close the tornado zone is to us, and there have been several times when our area is that dreaded zone that no one wants to be in.  We have rushed to the basement as sirens blared outside, and we have been pretty close to a couple of touch downs.  There is a reason that these types of things cause fear.  They are meant to be feared.  There is a natural fear of some things that is meant to protect you, send up the warning signals, and call for action. 

Just like that kind of fear could be helpful, I can also see the benefits of other fears I have experienced after Kamdyn was born.  When I looked back at my last post, I realized something.  Something that a year ago I was afraid of. 

While I know that there are some children with Down syndrome, who hardly have any health problems, and there are some who have many, I feel like Kamdyn is somewhere in the middle of all of that.  There is no doubt, however, that she has more health concerns than the average child.  I would like to be able to disprove that stereotype about children with special needs having more health concerns, but that is just not the case for us.  I do feel like Kamdyn's health issues are minor compared to what some others have experienced, but we have had our challenges as well.  Only a year ago, I was terrified at the thought of having a "sick" child.  I was not sure if I could handle it. 

Conquering that fear, and today being able to say that, yes, that fear is actually valid, but it doesn't define or control our lives, has fueled me in a way and given me passion.  It has made me see that we can face these things, and we will be ok.  Standing up to those fears has given me a passion and a fight.  It has given me a passion to not let them control my life as I once thought they would.  Health issues, special needs, or whatever, we will go on, and we will live.  But we won't just live, we will be happy, and we will love. While everyone manifests their passion in a different way, maybe a passion for orphaned children, educating others, fiercely advocating, or whatever the case may be, it is all of the joys, fears, failures, triumphs, and twists and turns of life that lead you there.  They lead to that place where you feel like you are exactly where your life, where God was always taking you.  And you feel so at home, and you know that there is nowhere you would rather be than in this Divinely appointed place.  

 

My neice, Alicia.  The excitement does not dwindle when she is around.

Special needs does not mean the end of everything in your life.  It means the beginning of something special that will fit into your life in this perfect way that I could never have imagined.

Glow in the dark side walk chalk.