Einstein Syndrome: Down Syndrome with a Positive Attitude

Upper respiratory infections are an expected part of the “syndrome” of Down syndrome.  Since your baby is more than a few months old, you have probably already dealt with at least one sinus infection and one episode of ear fluid. You may have administered a round of antibiotics to combat the infection.

If you care at all about language development for your son, treat these minor health issues with the seriousness that you would treat cancer.  Ear fluid and sinus infections set up a cascade of physiological and neurodevelopmental responses that result in severely compromised speech and language in older people with DS.

Sinus Congestion

Suppose your child gets a sinus infection.  Obviously he begins mouth breathing because of the congestion.  So his mouth hangs open.  The tongue is resting on the bottom of the mouth instead of in the palate where it would be if the mouth is shut.  The palate doesn’t receive the constant pressure from the tongue to shape it as it grows, so it develops the stereotypical high arched shape associated with DS.  Then in later years there is no place in the mouth for the tongue to rest.  It doesn’t fit in the misshapen palate.

Meanwhile the sinuses don’t have air flowing through them.  Since the way we use our body determines the structure of the body (function determines structure) the sinuses remain underdeveloped.  Underdeveloped sinuses result in characteristic flat facial features of DS.  Plus, underdeveloped sinuses get clogged easily, and therefore get more infections.  And now you are on a downward spiral.

There’s more bad news.  The nose filters air; the mouth doesn’t.  So, mouth breathing makes you prone to infection.   The constant air flowing over the tongue desensitizes and thickens it.  It also dries the teeth, leading to tooth decay.

Ear Fluid

The sister problem to sinus congestion is middle ear fluid.   When your son has ear fluid, his hearing is distorted because he is hearing through water.  During these critical months when his brain is being wired for language and for auditory processing, he is receiving distorted input.  If the ear fluid is fluctuating, he is receiving confusing input, sometimes clear, sometimes distorted.  But for him this is normal, and what he is supposed to copy.  His tonal processing will be distorted.  Tonal processing is the ability to correctly hear and also to speak sounds at varying frequencies.  A child will only be able to speak a tone if he can correctly hear that tone.

Ear fluid is easily detectable by a simple test in your pediatrician’s office, a tympanogram.  A probe is inserted into the ear canal, and a puff of air is blown against the ear drum.  The machine measures the vibration.  The readout is immediate.  You will know if there is good vibration or not.  A flat tympanogram means that the ear drum is not vibrating, almost always because of fluid, and that your son’s hearing in that ear is distorted.

What is a Parent to Do?

Do not go reaching for amoxicillin.  Once you get on the antibiotic roller coaster, it is hard to get off.  Yes, antibiotics are lifesaving and have their place.  But, the chronic sinus and ear infections of babyhood are best treated by learning to support the immune system.  And, we’ll learn in a later post that antibiotics have their own problems that they create for our kids with DS.

Now, if you are dealing with sinus congestion, your first line of attack is to get the clogged mucous out of there.  On the ES email list, the moms have robust discussions of  snot.  (That’s the least of it—a  little further down this list of top fifteen things, I’ll tell you that we also discuss poop.)  The best technique is nasal irrigation, or bulb aspirator.  You let saline water flow into the nostrils, it loosens the snot, and then you suction the gunk out.  No, you are not going to suffocate your child with the water.  He already can’t breathe though his nose.

That mucous in the warm, dark, moist environment of the sinuses is a perfect environment for bacteria to grow.  So, you want it gone.  Mucous is your enemy.

Next, you might experiment with cold medicines that dry the tissues or thin the mucous.  Plain Robitussin (guaifenesin) thins mucous.  Benedryl will lessen the swelling in the tissues, so the mucous can drain.

Beyond medications, expand your arsenal with herbs.  Echinacea, garlic and elderberry are some of my favorite weapons against infection.  Other herbs are also effective.  So is bovine colostrum.  When I first started using colostrum to treat sickness, I told people it was a miracle drug.  I had seldom seen such rapid response, even from antibiotics.

Begin giving your son antioxidant vitamins and minerals to support the immune system.   Yes, yes, I know that a prominent study published in the British Medical Journal last year reported that antioxidant vitamins have no effect in Down syndrome.  What was not reported is whether health outcomes were even recorded or measured by these researchers.  This research study included no information at all on the frequency or duration of sickness, infections, colds, flu in these babies who were studied.  Rather than relying on that study, I look at the bulk of the nutritional research in the last 30 years which testifies that antioxidants are a potent weapon against sickness.  Antioxidants include Vitamins A, E, and C, and the minerals zinc and selenium among others.

If you have not already done so, begin supplementing Omega-3 oils.  These essential fatty acids are necessary for healthy immune response.  There is quite a bit of disagreement about what the proper ratio of Omega-6 to Omega-3 should be.  But everyone agrees that both are necessary.

For a full explanation of how to work with the body to heal, without antibiotics, I recommend the book Healing Childhood Ear Infections: Prevention, Home Care, and Alternative Treatment by Michael A. Schmidt.

Finally, let’s focus on those ears.  If your baby has ear fluid or a flat tympanogram, get the tubes.  Your choice is a quick, almost bloodless surgery, followed by ear drums that work, or months and years of fighting fluid during your child’s prime season for language development.  I’ve been watching discussions about ear fluid on the DS email lists for the last thirteen years.  In that time I am not aware of anyone who found a successful, non-surgical treatment to keep the ears free of fluid.  Language development is just too important to compromise.  Get the tubes.

A Quick, Personal Story

When Mary was four months old the ENT told us she had ear fluid and he rather brusquely demanded that we get tubes.  Myron and I were hesitant.  She hadn’t had an ear infection.  We were sure she could hear because she responded to sounds.  Besides, what damage could a little fluid do?

Shortly after that we had her first evaluation with a neurodevelopmentalist at NACD.  He had impressed us with his natural, holistic approach to health.  But on the question of ear fluid he didn’t even blink.  “Get the tubes,” he advised.  So we did.

I’ll never forget what happened shortly after Mary’s surgery.  I was holding my five-month-old baby in my arms and spoke to her—my very own baby, who I had loved and held and sung to and breastfed.  In that moment, she showed that she was not accustomed to hearing my voice.  She startled.  She threw out her arms and legs in that startle reflex that shows an instinctive fear response—just because of the undistorted sound of her own mother’s voice.  That is why I’m so adamant about this.  Don’t mess with ear fluid.  Get the tubes.

Kids with Down syndrome have enough problems with speech and language. Don’t make it worse by taking a “wait and see” approach to ear fluid or sinus congestion.  Treat these conditions aggressively.

Filed under: antioxidants, Down Syndrome, Health, nutrition, oral motor Tagged: | Down Syndrome