Showing posts with label feeding. Show all posts
Showing posts with label feeding. Show all posts

Friday, July 4, 2014

As A Parent What Can I Do To Improve My Child's Feeding Skills and Speech Clarity (DVD)

 
 
Lending Library Item
 
 
 
 
 
"I decided to make this video to help you, the parent, learn what you can do at home to improve your child's speech clarity and feeding safety.  Over the years, I have found that parents can become great assets to their child's speech language pathologist, once they understand why they are being asked to perform certain homework assignments with their child.  The exercises shown in this video are presented in a hierarchy of very small steps which will ensure that your child will not only make progress but will have fun doing so.  This video is designed to not only show you what you can do to help your child, but also explains to you why you are being asked to use specific straws, horns or bite-tubes.  In addition, watching this video will give you the knowledge you need to become a better advocate for your child, whether they receive speech therapy through the public school, early intervention program, clinic, hospital or private practice.  Knowledge is a very powerful tool."
 
Sara Rosenfeld-Johnson, CCC-SLP
 
 
Goals of Oral-Motor/Feeding/Speech Therapy
 
  • Increase sensory awareness and normalize tactile sensitivity.
  • Teach more normal movement patterns.
  • Achieve differentiation of oral movements.
  • Enhance feeding skills for better nutritional intake.
  • Improve speech sound production to maximize intelligibility.
 
 
 
Current Status
 
Available
 
 
 
 

 
 

Wednesday, June 4, 2014

Supplements, Diet, Essential Oils & Lifestyle Changes, What Works For Us and Why


Having a child changes you, and having a child with special needs changing everything.  When Presley was born with Down syndrome almost 3 years ago, my medical background prompted me to begin researching everything I could do to have a positive impact on her future mentally and physically.   I noticed there were children with DS that were doing amazing things such as reading by 3 years old, growing at a typical rate, and hitting most of their milestones with little or no delay.  This inspired me and pointed me in the right direction.

I have since learned about additional genetic issues that commonly occur with DS, such as MTHFR.  I learned Presley has one copy of the 677, which meant she could process approximately 60% of folate.  This also means she cannot clear everyday toxins/chemicals that a typical person is exposed to, such as those found in artificial dyes, processed foods, bleach, laundry soaps, air fresheners, volatile organic compounds (VOC's), paints, and the list is endless.   When a person holds these chemicals/toxins in their body, they become stored within their cells and can cause multiple issues which are damaging to the body.  This is even more detrimental to a child with developmental delays.   In addition, children with DS experience large amounts of oxidative stress beginning at birth, which negatively affects everything in their body and accelerates aging . 

We began slowly making changes in our household.  This is currently what we are doing to lessen Presley's exposure to harmful substances, increase her nutrient intake, decrease her chances of debilitating diseases (like Alzheimer's), enhance her learning cognitively and physically, and promote general health and well being.  It wasn't easy initially, and it isn't for everyone, but if there is something we can do to help her, we will.   Doing this for Presley has in turn helped our entire family, too. 

***Please note that the highlighted words are links to supporting articles or recipes.



1.   HOW WE TEACH PRESLEY AND CONDUCT HER THERAPY: 

We use a neurodevelopmental program called the National Association of Child Development.  They have had a huge impact in helping Presley.  We travel to Dallas every 3-6 months for evaluations.   They write a program specifically for her.  Presley works hard and we celebrate each milestone and achievement.  If you have a child with special needs or developmental delay, get a program that is tailored for them only.  They also assist us with homeschooling our 4 year old, and she is currently reading at a 12 year old level.  We can't say enough good things about NACD, and the guidance they have given us.   We still use traditional therapies like ST, OT, and PT, but only once a month to keep Presley "in the system".  ICAN is used by some people also (like Andi).



2.  HOW WE COOK AND EAT: 

Nothing replaces a clean diet and a clean kitchen.  NACD also provides a nutritionist, Dr Neil.  We consulted him when Presley was very young and hope to speak with him again very soon.  He recommended we begin with his "thermos cereal" of grains and an extremely nutritional broth called "potato peel broth".  I have seen first hand how this broth has helped people with cancer, renal failure, and joint disorders.  We began goat milk smoothies with raw almond butter, fresh or frozen fruit, and maybe some spinach.  He encouraged raw foods as possible for the live enzymes to be effective.  After his consult and hours of research, we incorporated the following changes:

     *  Raw goat milk.  I began with pasteurized   
         until I found a reputable farm. It has smaller
         proteins than cow milk so easier to digest
         which is beneficial for absorption and helps
         with constipation.  See a cow vs. goat vs breastmilk comparison.      
        

     *  Cage free organic eggs straight from the farm. Livestrong.com  
         confirms that organic eggs contain  2 times the omega-3s, 1/3 of
         the cholesterol and 1/4 of the saturated fat as conventional eggs, and
         2/3 more Vitamin A which is great for the immune system, hair, eyes,
         and skin.

     *  Grass fed organic beef (from local farmer's market) This has up to  
         6 times the omega 3 fatty acids in comparison to regular beef.

     *  Coconut/almond milk.  We make coconut milk regularly using canned
         milk now and use it in everybody's smoothies.

     *  Gluten free for Presley and 90% of the time for my typical daughter
         and husband.  Other diets I have read and learned from are the GAPS
         diet and Paleo diet.

     *  The only dairy for Presley is organic yogurt, butter, and some cheese.
         This is not frequently though.

     *  We eat real organic butter only.  The body needs healthy fats.

     *  No pesticides or preservatives.

     *  No dyes/artificial colors. Many have been associated with
         behavioral disorders in children.

     *  Minimal processed foods and meats.  I read the ingredients and
         prefer less than 7 ingredients, and it must be ingredients I recognize
         and understand. We have become a society of fast and convenient,
         but we have also became a society of increased obesity, heart
         disease, diabetes and more.  There is a connection. No MSG!

     *  Absolutely no high fructose corn syrup.  Read the labels, it is 
        everywhere, such as in ketchup, BBQ sauce, applesauce, and  
        especially sodas, sports drinks, and teas.  Learn more about the
        dangers of this altered sugar.

      *  No white sugar.  Sugar causes inflammation.  Sometimes we
         use coconut sugar in recipes, but many times we use dates.

     *  We cook most things from scratch now, something I definitely had to
         learn.  So, bring out your old cookbooks.  I enjoy a cookbook from
         Wellness Mama and Against All Grain: meals made simple.

     *  We cook using turmeric and garlic everyday.  I add garlic &
         Nutritional yeast to the girls eggs each morning.  My husband calls
         chicken dinner with turmeric "yellow chicken".

     *  We use wooden utensils.  We traded our Teflon coated cookware for cast iron and stainless steel.

     *  Most of our plastic containers, cups, and bowls have now been
         replaced with glass or stainless steel. We use mason jars alot.

     *  We buy organic as much as possible. I once read a person could
         eliminate 80% of their exposures just by choosing organic.
         Filtered water in the kitchen and showers.  . Read here about fluoride and how it can affect children's teeth.

     *  We attempt to avoid acrylamide, but it is another toxin that is  
         everywhere.  It is the outer, brown, more crispy portion of
         bread crusts, pretzels, french fries, crackers, chips, and more. 
     
     *  We make our own elderberry syrup to support the immune
         system.  Read more about what we do to strengthen immune system here:

     *  I make myself a green smoothie (click on link) each morning which
        will include some combination kale, spinach, coconut/almond milk,     
        carrots, beets, mango, avocados, wheatgrass, apples, strawberries,
        etc.... I mention this to remind you to take care of yourself or you can
        not take care of your family. I also have a cup of matcha green tea or
        herbal tea or turmeric tea) with honey and coconut oil.  Matcha green
        tea has more EGCG and antioxidants than any other green tea and so
        many other health benefits.  Read more about it here.

     *  Payton (typical 4 y/o)  gets her own version of an organic
         smoothie with coconut/almond milk, banana, raw cacao, vanilla,
         yogurt, and some type of green or wheatgrass or a combination of
         mango, orange juice, honey, and yogurt or kefir.

     *  Komboucha tea is full of natural probotics.  It tastes great and requires
         minimal effort to make each week.   I give the girls a little bit.


3HOW WE TAKE CARE OF OURSELVES FROM THE OUTSIDE IN:


     *  We choose organic shampoos, conditioners, toothpaste, and
          hairspray.  I make a homemade toothpaste for my husband and I. He
          actually prefers it. http://www.keeperofthehome.org/2012/04/rethinking-oral-health-care-a-homemade-toothpaste-recipe-for-tooth-remineralization.html

     *   We use handmade soaps and lotions,  (same farm we get goat milk
          and eggs from), or make it ourselves.

     *  Epsom salt baths for the girls each night for the magnesium
         absorption, along with some drops of lavender. Sometimes I add a
         little baking soda and apple cider vinegar for the detox effect. It can
         help flush out toxins, strengthen the immune system, promote
         relaxation and sleep, and help muscles and nerves function properly. I
         then use organic coconut oil on both girls in lieu of regular lotion each
         night.  It has antibacterial properties and is great for the skin.  There
         are additional benefits using coconut oil with DS  that I will explain
         further down.

     *  We recently purchased a saunca, although it will be a little while
         before my daughters use.  This is an excellent way to detox heavy metals. 

     *  I checked the Environmental Working Group for the best
        sunscreens and chose Badger Brand.

     *  I make our baby wipes.  Super easy and cost efficient.

     *  I make our hand sanitizer.  Smells better and I know the ingredients.

     *  We look for non toxic alternatives in all that we do, such as a
         nail polish called "Piggy Paint".  From their website: "Piggy Paint
         is specially formulated from God’s natural ingredients and dries to
         a hard, durable finish. There are no toxic chemicals; it’s free
        of formaldehyde, toluene, phthalates, Bisphenol A, ethyl acetate
        and acetone. Say good-bye to harsh, smelly chemicals and hello to  
        Piggy Paint…it’s as Natural as Mud!"

     *  I make our own hazelwood and amber necklaces

     *  We have taken Presley to a chiropractor since she
         was 9 months old.  If you are curious what chiropractic treatments
         are capable of, watch their video.

     *  Occasionally we have tried cranialsacral therapy.  However,
         Presley has not been very cooperative. 
4.  HOW WE CLEAN IN OUR HOUSE:

When you read labels, you begin to realize how many harmful chemicals are around your home.  Can you pronounce even one of the ingredients? There was a clean alternative to everything we were using.


     *  All our cleaning supplies have been replaced with baking
         soda, vinegar, hydrogen peroxide, and castile soap, and essential oils. 
         I cringe thinking of how often I used bleach before.   Most
         cleaning supplies are bad for you and the environment.  How can they
        not eventually end up in the water supply?   You can learn more ways
        to do it yourself from here:  http://www.diynatural.com/


     *  We use essential oils as our air fresheners, first aid, cleaning
         supplies, colds/congestions, rashes, and much more.  See Tricia's previous post.    I also use them in our humidifier each night.

     *  No pesticides are used around the home.  I use peppermint oil and water to spray around the children's playground.  It is very
        effective against spiders.  Lavender, cedarwood, and citronella work
        against many insects.  I purchased a premade bug spray for the girls
        made with essential oils.

     *  I make our own laundry soap.  It is safe and costs so little. 

4.  WHAT WE SUPPLEMENT WITH AND WHY: 

Payton (typical 4 y/o) gets an organic chewable multivitamin and additional vitamin C.  She gets a probiotic, one drop of Vitamin D (1000 IU, only if no sun exposure that day), and chocolate cream fermented cod liver oil (CLO) in a tablespoon of applesauce.  She calls it her "chocolate applesauce".  She also takes a tablespoon of homemade elderberry syrup.  This is followed by her smoothie and a breakfast of 2 eggs every morning.

Each morning, I make a raw goat milk or coconut milk smoothie for Presley.  It has milk, fresh or frozen fruit, some spinach, and the following supplements.  All of this is mixed up using a Nutribullet.  There are certain vitamins and antioxidants that I feel Presley and the rest of the family may not get enough of in our diets.  Some days it is challenging to get an almost 3 year old to eat her vegetatables, but it can be even more challenging to get the adequate quantity to meet the required recommendations to counteract oxidative stress, to make up for the MTHFR gene defect, and support and promote a strong immune system.


We also created Presley's supplemental regiment based upon her lab work.  We routinely obtain bloodwork at Arkansas Children's hospital.  Read more about what labs we get.

Presley lets us know quickly when something is not right for her.  She will become irritable, emotional, upset, or just not sleep when a supplement does not agree with her.  We tested her urinary neurotransmitters and noted that most were elevated, so some supplements seem to "tip her over the edge".  Within a few days, we usually discontinue it if it bothers her. I have never tried to "push through it".

We are interested in the long term affects of these supplements, such as the prevention of amyloid plague build up and cognitive decline associated with Alzheimer's disease.  There is no "magic pill" to "cure" the effects associated Down syndrome or anything that will take the place of the hard work we do daily in our neurodevelopmental program. 

 Presley's supplements:

Prescription supplements 


 ** Naturthroid - this is a natural thyroid supplement.  It is a natural alternative to Synthroid, which is synthetic.  I actually give this crushed with a tiny bit of applesauce soon after Presley awakes so it is on an empty stomach.  I crush it due to a cellulose coating that delays absorption.  It didn't dissolve well in water, so I didn't feel she was getting the full benefit.  I wait 45 minutes after this medication before I let  her have her smoothie.


** Leucovorin - a prescription form of folinic acid.  Based on research at Arkansas Children's hospital, the recommended dose is 1 mg per kg.  We have not made it past 5 mg total (we should be approximately 13 mg) due to the agitation that occurs with anything above 5mg.  Read more about cerebral folate deficiency from Andi Durkin's blog since there she is always a wealth of information, there is no reason to be redundant.


Natural supplements




Cinnamon - organic.  I just sprinkle it into her smoothie.  Benefits include anti-clotting properties, anti-microbial, helps control blood sugar, cognitive stimulant, excellent source for manganese, and inhibits the release of arachidonic acid (a fatty acid responsible for the inflammatory response) from cell membranes, so very useful in inflammatory disorders.

Virgin Coconut Oil - organic.  I give approximately one tablespoon in her smoothie each morning.  The majority of adults with DS will have the physical changes associated with Alzheimer's much earlier than would be seen in a typical adult.  They may not exhibit the symptoms, but they can already have the changes present.  Coconut oil is a good source of a particular type of fat known as medium chain triglyceride. This fat is converted into substances called ketone bodies, which the brain can use as a fuel source. According to Dr. Michael Rafii, Director of the Memory Disorders Clinic at UC San Diego, the reason coconut oil may be effective in treating Alzheimer's disease is because its medium chain triglycerides may provide an alternative energy source for the brain cells that, due to Alzheimer's disease, are no longer able to use glucose as an energy source.  Please watch this video by a Dr in Florida who claims to have cured her husband's severe Alzheimer's by adding coconut oil.

Royal Jelly - we currently give 1/2 tsp of YS Eco Bee Farms Pure Royal Energizer.  Royal jelly naturally supports neurogenesis (brain cell formation) which is important as people with DS experience cell death more quickly.  Read more about this on Andi Durkin's blog.


*   Local raw honey - I give 1 -2 tsp of this.  Local raw honey contains bits of pollen carried by the bees and therefore gives a continued minute exposure which can help lessen allergy symptoms.    It provides enhanced energy, has anti-bacterial properties, and promotes sleep and relaxation. Honey is not to be given to children under 12 months of age.

Bragg's Apple Cider Vinegar - organic.  I give one capful (1 tsp?) each morning. It improves digestion, assists with constipation and diarrhea, slows the elevation of glucose levels after eating, potentially lowers cholesterol, and is a good source of antioxidants. 

Dr Jensen's Black Cherry syrup - I give approximately 1 tbsp. each morning.  It is a strong antioxidant and therefore can be helpful for inflammation in the body.  "There is currently a lack of research on the health effects of consuming black cherry juice. However, a number of studies suggest that anthocyanins (one of the key antioxidants found in black cherry juice) may offer certain health benefits.  For instance, a 2011 study published in the American Journal of Clinical Nutrition found that dietary intake of anthocyanins may help prevent high blood pressure. And in a 2006 report published in Free Radical Research, scientists state that anthocyanins "may play an important role in health promotion in terms of obesity prevention, cardiovascular health, anti-inflammatory and anti-cancer effects."

Black seed/black cumin oil - I give a "splash" which equates to a few drops of this each morning.  It has been called the "cure for everything except death" by its ability to stimulate the immune system as much as 72 percent in soon as four weeks.  An adult dosage is one teaspoon a day taken with honey and juice prior to breakfast. 



Important supplements



Probiotic - we use Seeking Health. It takes less than 1/8 tsp for each of our girls.  80 percent of the immune system is located in the gut.  A healthy gut helps keep Presley healthy overall, which means less down time not learning and doing program.  Probiotics may not be good for someone who is immunocompromised though.  We also give the girls yogurt and kefir.

Phosphatidylcholine - we currently use Body Bio PC.  I highly recommend watching this 19 minute video to fully understand PC:  The body makes a brain chemical called acetylcholine from phosphatidylcholine.  Acetylcholine is important for memory and other bodily functions.  Since PC might increase acetylcholine, there is interest in using it for improving memory and for conditions such as Alzheimer's disease.  UPDATE 2015 : we switched to Seeking Health brand and it is more cost effective and efficient.

In several off-cited studies by Elizabeth Gould and Charles Gross of Princeton University, phosphatidylcholine was found to stimulate the growth of new brain cells and neural connections, a process known as neurogenesis and once thought impossible after a certain age."  " Eggs and soybeans are the best source of choline, followed by meat (particularly liver), seeds, and nuts. But it’s not easy to get enough phosphatidylcholine from your diet, particularly if you’re trying to cut down on meat and eggs to control cholesterol. Most of the experiments with PC have been done with upwards of 5000 mg (the schizophrenia study used 6300 in two doses), and you’d likely need a choline-rich diet and a supplement to get anywhere close to that level.
(source: http://www.forbes.com/sites/melaniehaiken/2013/01/16/a-key-brain-boosting-supplement-youve-never-heard-of/ ) The recommended daily allowance for choline for a typical adult is 425-550 mg. One egg contains approximately 110 mg of choline.  The one tsp of BodyBio PC I give Presley contains 3000 mg. 



Nutrivene multivitamin - they recently reformulated this multivitamin to reflect current studies.  There are common nutritional deficiencies associated with DS and this multivitamin addresses them.  MSB is another good brand.  Nutrivene gives the methylated form of folate and B12 to cover any MTHFR status.  Here is a must read article if you are considering whether or not to supplement:  Here is a simple article about methylated folate.

 
UPDATE 2015: we stopped the multivitamin after tailoring supplements according to her labs.


Ambrotose glyconutrients - Read more from Andi Durkin's blog.  We have been giving this since Presley was one year old.  Current dose 1/4 tsp daily.
 
UPDATE 2015:  we stopped this after it failed muscle testing several times in a row.


Fermented Cod Liver Oil -  we currently use Green Pasture's chocolate cream at 1/2 tsp daily.  The processing that many brands of cod liver oil undergo results in a product with low levels of vitamin A and almost no vitamin D. Fermented cod liver oil, however, is an unprocessed, unheated oil that is able to keep these vitamins intact. Therefore, fermented cod liver oil may have superior health benefits when compared to conventional cod liver oil. Among cod liver oil's most beneficial properties are its rich concentrations of EPA (eicosapentaenoic acid) and DHA (docasahexaenoic acid). Both EPA and DHA are important omega-3 fatty acids required by the body. DHA is especially important in the function of the brain and nervous system. Cod liver oil is also a rich source of vitamins A and D. Vitamin D, a nutrient present in very few foods, is important for many muscle functions, as well as for preventing common diseases such as hypertension, type-1 diabetes and cancer. Vitamin A is required for proper immune system function, as well as bone and cellular growth.  Mackerel, herring, salmon and sardines stand out as common forms of oily fish. These particular fish all offer a more impressive content of omega-3 oils. Gayla and John Kirschmann, nutritional researchers and the authors of “The Nutrition Almanac,” estimate that a typical 7-ounce fillet of salmon provides around 4 grams of omega-3 oil. A person consuming this, or a similar serving of oily fish, each day would not require supplements to meet official recommendations.  We supplement because we do not eat oily fish on a daily basis. 
 
UPDATE 2015:  we changed over to Seeking Health fish oil after all the controversy surrounding the fermented CLO.
 

Liposomal CoQ10 - 100 mg is our recommended dose.  I give 28 drops which is approximately 70 mg and we get 30 mg from the Nutrivene.  Coenzyme Q10, also known as CoQ10 and ubiquinone, is a fat-soluble antioxidant found naturally in the body. CoQ10 is a powerful protection unit built into the body, removing free radicals, DNA damage, and other forms of oxidative damage according to the University of Maryland Medical Center. CoQ10 plays a critical role in the energy-producing component of cells called the mitochondria. It helps to develop adenonsine triphospate, or ATP, which is responsible for all muscle contractions. Coenzyme Q10 is often supplemented in doses of 100 to 300 milligrams daily. While you won't find foods with those amounts, there are some foods that are richer sources than others.  Coenzyme Q10 is found highest in red meats, and is particularly high in organ meats such as liver and heart. Over cooking the meat reduces the amounts of CoQ10, boiling and frying appear to have the greatest negative impact on the CoQ10 content of the meats. The Linus Pauling Institute reports that 3 ounces of fried beef contains 2.6 milligrams of Coenzyme Q10.
 
UPDATE 2015:  we switched to Seeking Health liposomal CoQ10.
 

* Circumin  (not pictured) - circumin is a compound of turmeric.  Tumeric gives curry its yellow color.  They are a member of the ginger family.  Curcumin has been shown to be a powerful suppressor of chronic inflammation-mediated disease processes.  Many Asian cultures use turmeric in nearly every meal. They rave of its anti-aging and medicinal benefits.  Curcumin modulates blood sugar and improves insulin receptor function by improving its binding capacity to sugar, which helps prevent inflammation.  Turmeric is the fourth most antioxidant-rich herb with an Oxygen Radical Absorbance Capacity (ORAC) of 159,277.   The curcuminoids boost levels of the body's most potent antioxidants including glutathione, superoxide dismutase and catalase. These molecules are critical for the body to limit oxidative stress-related damage to the vital organ systems.  Curcumin has been shown to reduce inflammation-mediating prostaglandins, cytokines and other molecules such as interleukin 6, nuclear factor-kappa beta (NF-kb) and tumor necrosis factor-alpha (TNF-alpha). With a high enough dosage, this has the ability to pull the body out of a strong inflammatory cascade and reset anti-inflammatory behavior at the cellular level.  Curcumin supplementation was shown to destroy cancer cell mitochondria, disrupt the cancer cell cycle and arrest stem cell development that facilitates further cancer cell formation. 

UPDATE 2015:  We switched to the Seeking Health circumin, which also contains reseveratrol.  Unlike many brands, this has a pleasant taste that could be taken straight from the spoon if needed.

We still cook with turmeric, but you must use a fat like coconut oil and also pepper (or piperine) to ensure optimal absorption. 


 
Additional supplements:



Vitamin C - we currently use a buffered Vitamin C called Perque.  It comes in powder form.  Half of a teaspoon gives about 1500 mg.   It is a strong antioxidant and supports a healthy immune system. Vitamin C is one of the safest and most effective nutrients, experts say. It may not be the cure for the common cold (though it's thought to help prevent more serious complications). But the benefits of vitamin C may include protection against immune system deficiencies, cardiovascular disease, prenatal health problems, eye disease, and even skin wrinkling.  Most of the studies Moyad and his colleagues examined used 500 daily milligrams of vitamin C to achieve health results. That's much higher than the RDA of 75-90 milligrams a day for adults. So unless you can eat plenty of fruits and vegetables, you may need to take a dietary supplement of vitamin C to gain all the benefits, Moyad says. He suggests taking 500 milligrams a day, in addition to eating five servings of fruits and vegetables. 
 
"It is just not practical for most people to consume the required servings of fruits and vegetables needed on a consistent basis, whereas taking a once-daily supplement is safe, effective, and easy to do," Moyad says. He also notes that only 10% to 20% of adults get the recommended nine servings of fruits and vegetables daily.  Moyad says there is no real downside to taking a 500-milligram supplement, except that some types may irritate the stomach. That's why he recommends taking a non-acidic, buffered form of the vitamin. "The safe upper limit for vitamin C is 2,000 milligrams a day, and there is a great track record with strong evidence that taking 500 milligrams daily is safe," he says.

Still, American Dietetic Association spokeswoman Dee Sandquist, RD, suggests doing your best to work more fruits and vegetables into your diet before taking supplements"Strive to eat nine servings of fruits and vegetables daily, because you will get a healthy dose of vitamin C along with an abundance of other vitamins, minerals, and phytochemicals that are good for disease prevention and overall health," she says.
While a cup of orange juice or a half-cup of red pepper would be enough to meet your RDA for Vitamin C, here are all the foods and beverages you'd need to consume to reach 500 milligrams (mg):
  • Cantaloupe, 1 cup (8 ounces): 59mg
  • Orange juice, 1 cup: 97mg
  • Broccoli, cooked, 1 cup: 74mg
  • Red cabbage, 1/2 cup: 40mg
  • Green pepper, 1/2 cup, 60mg
  • Red pepper, 1/2 cup, 95mg
  • Kiwi, 1 medium: 70mg
  • Tomato juice, 1 cup: 45mg.
Source: http://www.webmd.com/diet/features/the-benefits-of-vitamin-c  As you can see it is difficult to get an adequate amount in my almost 3 year old daughter, so we choose to supplement with this super antioxidant for now.
 
UPDATE 2015:  We switched to Seeking Health brand of vitamin C.  It is approximately 2,500 mg per tsp, and I give 2 tsp to Presley, 4 years old after doing the Vitamin C cleanse/flush per Dr Russell Jaffe's protocol. 
 


Acetyl L-carnitine - I began this to help with muscle tone over a year ago.  Immediately her strabismus (lazy eye/crossing eyes) improved.  Acetyl-L-carnitine is a well-researched nutritional supplement. It is synthesized to provide a more bioavailable form of L-carnitine, which is a derivative of the amino acid lysine. L-carnitine is made naturally in the body by the liver and kidneys, and then transported to other tissues such as the brain and heart. Like L-carnitine, acetyl-L-carnitine functions as an antioxidant and promotes the production of glutathione, a free radical scavenger, in cells.  (Gluathione is typically lower in DS)  Because L-carnitine is involved in cellular metabolism, acetyl-L-carnitine can help increase energy production in the mitochondria, the "power plants" of all cells, and thereby may generally boost physical and mental energy. As a dietary supplement, acetyl-L-carnitine is often used to help improve memory, and has been studied as a possible adjunct treatment for Alzheimer's disease. Acetyl-L-carnitine may also help address symptoms of depression, and may be useful in the treatment of Parkinson's disease, stroke, and Peyronie's disease. In addition, daily supplementation with acetyl-L-carnitine may have a protective effect on the central nervous system and may benefit the heart. There is also some evidence that acetyl-L-carnitine can enhance visual memory and attention in people with Down Syndrome, and clinical data indicates that it also may slow age-related mental decline that is not associated with Alzheimer's.  
While I would like to utilize all natural sources in lieu of supplements, I currently can not obtain the adequate dose of 500mg, so we supplement.  Natural sources of acetyl L-carntine: 

 - 3 oz beef - 80-81 mg
 - 3 oz pork - 20-24 mg
 - 3 oz fish - 5 mg
 - 3 oz chicken - 3 mg
 - 1 cup whole milk - 8 mg

 - Other sources include peanut butter, avocado, asparagus, and wheat product, although lower in L-carnitine content.  Source 
 
UPDATE 2015:  We continue to use Seeking brand acetyl L carnitine at 500 mg based on organic acid testing showing fatty acid oxidation issues to which acetyl L carnitine was recommended.  No issues were noted after three months with follow up testing.


Astaxantin - this is a more recent addition to all of our supplements.  It is potentially the most powerful antioxidant.  In terms of antioxidant power or potency, astaxanthin is 550 times stronger than vitamin E, and 6,000 times stronger than vitamin C. It has numerous health benefits from UV-radiation protection, to eye and heart health, to improved athletic performance.  If you decide to give astaxanthin a try,  it is recommend starting with 2 mg per day, and working your way up to about 4 mg per day (adult), or more if you're an athlete or suffering from chronic inflammation.  If you are on a krill oil supplement, which naturally contains astaxanthin, take that into consideration. Different krill products have different concentrations of astaxanthin, so check your label. Another factor to keep in mind is that astaxanthin is a fat soluble supplement. So unless you take it with a small amount of fat, it's not going to absorb well. Butter, coconut oil, or eggs would be ideal complements to ensure optimal absorption.  Astaxanthin lacks the ability to turn into a pro-oxidant, so it has been deemed one of the safest antioxidants, even at higher levels.
 
UPDATE 2015:  temporarily discontinued.


* Vitamin D - we currently use a liquid containing 2000 IU per drop from Seeking Health.  I will give her 1 drop depending on if we will be spending time outdoors that day.  It is crucial for the absorption and metabolism of calcium and phosphorous, which have various functions, especially the maintenance of healthy bones. Vitamin D serves as an immune system regulator, aids the immune system for colds and others, may reduce the multiple sclerosis risk, may help maintain cognitive function in later life, possibly key to a healthy weight, it can reduce the severity and frequency of asthma symptoms, reduces of the risk of developing Rheumatoid arthritis in women, a form of Vit D protects from low levels of radiation, help people recover from TB, adequate Vit D level show lower risk of developing cancer, and lastly one study suggests low levels may increase the risk of a heart attack and early death.  If you live in the tropics and can expose your unprotected skin to two sessions of 15 minutes of sunlight each week your body will naturally produce adequate amounts of vitamin D.  The following factors may reduce your body's vitamin D synthesis:  1. If you live far from the equator, your sunlight exposure will be less during many months of the year.  2. cloud cover 3. smog  4. sunscreens.  If your body cannot produce enough vitamin D because of insufficient sunlight exposure you will need to obtain it from supplements and dietary sources. In the absence of sun exposure 1000 IU of cholecalciferol is required daily for both children and adults, according to a study by Boston University School of Medicine. People with dark skin pigmentation and the elderly are more likely to have vitamin D deficiencies.


Above all, our girls get plenty of love, plenty of rest, a predictable (yet flexible) schedule, lots of creative play time, especially outdoors.  They get their hands dirty just as any kid would.  We have our outings to Chick Fil A on occasion.  We go to church on Sundays.  We read a lot and listen to music often.  We are trying to slow down and enjoy a more "clean" life.  It does make us different from the norm, but we like it. 
 
I hope you found this post helpful and insightful.  Remember, these are changes we have made slowly over the past 3 years.  Presley being born with DS has helped us to grow in so many positive ways.  I am so encouraged by her kind spirit, her motivation, her determination, and how she continues to surprise us daily.  
 

Blessings, Robin
 
 
*****Disclaimer, I am not recommending a certain type or brand of supplement.  I am simply stating what is currently working for us.  Each person should do there own research and consult with a nutritionist, physician, or naturopath for guidance.

Friday, March 15, 2013

Meet TalkTools Sara and Lori



There are so many things that I thank God for every day.  There are so many things that I pray for every day.  My nightly prayers are ever changing based on the needs of my friends, family and the world around me.  As my children's mother I am very specific with my prayers to God.  My prayers are private and they are between me and God, but I will say this...I am always specific about one thing in my prayers for Emma.  I pray passionately for her speech. 


When people ask me what they can do to help, my response is simply to pray, pray for my Emma to have a voice.  Pray for her speech.  So far God has listened and I thank Him from the bottom of my heart.   Because I feel so strongly about speech and because Emmalin does well in this area I will share everything that we did and currently do regarding speech therapy. 



Now all of our children are strong in certain areas and this is Emma's area (God must get tired of me). Robin will have to write a series on physical therapy because little Presley has always been physically superb.   



I can not possibly expect God to intervene without me doing my part.  I work very hard on Emma's speech therapy and research everything I can to assist in her growth.  After a ton of research Robin and I realized that there is only one group doing everything right.  TalkTools is an amazing company.  They are easy to work with, always there to help via phone or email.  In my opinion they are the speech gurus and because of them many children will be ever changed. 

 
 
Sara Rosenfeld-Johnson, MS, CCC-SLP

Title: Founder, TalkTools
 
 
 
 

 
Sara Rosenfeld-Johnson, M.S., CCC-SLP has more than 35 years of experience as a speech and language pathologist. She has spent the last 25 years perfecting her unique brand of muscle-based(oral-motor) speech therapy with a high degree of success, even where traditional speech therapy has failed. Now she is
devoted to teaching others the methods so they can help their clients with difficult to-remediate articulation
problems.
 
Sara is the author of Oral-Motor Exercises for Speech Clarity, Assessment and Treatment of the Jaw-Putting it all Together: Sensory, Feeding and Speech, The HOMEWORK Book, the Drooling Program, Activities for Kids, Assessment and Treatment of the Jaw and other educational materials. She founded Talk Tools®/ ITI /
Innovative Therapists International in 1995 as a speaker's bureau and source for muscle-based (oral-motor) therapy tools. She has held seminars throughout the United States, as well as Canada, Italy, Germany, New Zealand, Australia, Ireland, England, South Africa, Hong Kong, Malaysia, Cyprus and Singapore.
 
Sara is the international spokesperson for speech, language and feeding disorders related to CHARGE Syndrome and Moebius Syndrome, a member of the National Down Syndrome Congress 'Professional Advisory Committee (PAC), and a nationally recognized presenter for Down syndrome and Cerebral Palsy associations.  Having worked with early intervention programs in Texas, New York, Connecticut and New Jersey, she has also become a nationally recognized speaker in the area of early
intervention. In addition, Sara regularly appears as a featured speaker for ASHA (American Speech-Language-Hearing Association) state and national conventions.
 
The Ithaca College and Columbia University graduate founded Sara R. Johnson & Associates, a clinic specializing in the diagnosis and treatment of clients with muscle-based (oral-motor) feeding and/or speech disorders.
 
 
 
 
 
Lori L. Overland, M.S., CCC-SLP, C/NDT


 
Lori Overland is a speech and language pathologist with more than 30 years of professional experience.

Lori specializes in dealing with the unique needs of infants, toddlers, pre-schoolers and school-aged children with oral motor, feeding and speech disorders. She has received an award from the Connecticut Down Syndrome Association for her work within this population.

Lori consults with children from all over the world, providing evaluations, re-evaluations, program plans and week-long therapy programs. Lori also provides consults to local school districts and Birth-to-Three organizations. Her goal in addressing feeding and speech challenges is to improve the quality of life for both the children she serves and their families.

In addition to her private practice, Lori is a member of TalkTools speaker bureau. Lori has lectured on sensory motor feeding disorders across the United States and internationally. Her classes, "Feeding Therapy: A Sensory-Motor Approach" and "Developing Oral-Motor Feeding Skills in the Down Syndrome Population" are approved for ASHA and AOTA CEUs.

Lori is the author of "A Sensory-Motor Approach to Feeding", Perspectives on Swallowing and Swallowing Disorders (Dysphagia) (October 2011) and "Food for Thought", Advance for Directors in Rehabilitation Magazine (May 2001).

She holds degrees from Hofstra University and Adelphi University and has her Neurodevelopmental Treatment certification (NDT).





Wednesday, December 12, 2012

Straw therapy follow up

I recently emailed Talk Tools with several questions after beginning their straw therapy program. I reviewed this with my Speech therapist, and we concluded that if your child is proficient in straw drinking prior to initiating straw therapy, then you may try to begin with straw #4. If straw #4 is too difficult, then back down to straw #3. If they have not used straws before, then begin with straw #1. We will change to #4 this week and see how it goes. Here is the response I received: Thank you for your question! When beginning the straw drinking hierarchy, you can either begin at straw #1 or #4. You are correct in making sure the child is only putting 1/4 of the straw in their mouth, this way the child is using good lip rounding and the tongue is retracted. It sounds like you might want to try straw #4 with your daughter. If she only puts 1/4 of the straw in her mouth, then you will not need to cut the straw (straw #1 and 4 are the only ones you can cut). If she is putting more than 1/4 of the straw tip in her mouth then you will need to cut the straw to 1/4 inch above the first twist. By straw #4 the tongue must be completely retracted in the mouth and the jaw is stable. She will not be allowed to suckle on straw #5. If you see a forward and backward movement of the jaw - then she is still suckling. The criteria for success involves: 1. No liquid leakage or air leakage between the lips. 2. The jaw should be relatively still/stable, indicating jaw-tongue independent movement. 3. Lips should be slightly protruded. 4. The child is able to drink 4 ounces of liquid in 2 min or less. If you give your daughter straw #4 - you will know if it is too hard - she will be struggling to suck liquid up - then you will return to #3 until she meets criteria. I hope this helps and let me know if you have any further questions! Monica Purdy, M.A., CCC-SLP Speech and language Pathologist Oral Placment and Feeding Specialist

Wednesday, November 28, 2012

Oral Motor Feeding Information

                                                                                                       
(Taken from www.speechmama.com   then click on “Down Syndrome”) Please visit this great website to view the article and pictures. This is so important to learn while your child is young.

I am definitely not an expert when it comes to Down Syndrome-Oral Motor Feeding Skills….however….have been doing a significant amount of research and have taken (and continue to take) courses offered by Lori Overland…so I feel as if I do have information to share. If anything…..I hope to help parents and lead them in the right direction.

First I want my readers to click on the link below. This article was written by Sara Rosenfeld-Johnson…she is basically the guru when it comes to feeding and Down Syndrome. The link below discusses the 7 Myths about Down Syndrome:


This blog provides information related to the oral motor myths listed above….and then information about bottle and breast-feeding your baby with Down Syndrome: http://downsyndromenewmama.blogspot.com

This blog offers information about feeding and I really liked the pictures provided in reference to spoon-feeding your baby with Down Syndrome: http://gotdownsyndrome.blogspot.com

SPOON FEEDING:

A very important aspect for oral motor therapy with babies/young children with Down syndrome is discouraging tongue thrust and encouraging lip closure. A very simple way to get this “oral motor therapy” in is in the way of spoon feeding. There’s a certain technique which can be done when spoon feeding to facilitate this.

This can be used on children who are very young – from the very first time they start eating solids!

Hold the spoon sideways, so that the side of the spoon is touching each side of the mouth, let the child get the food off it that way.






Immediately turn the spoon the other way (still sideways, but facing a different direction) and feed the child.




Then turn the spoon again the opposite direction and let them get the last bit of the food off.




It is best for this to be done 3 times in a row, like the above picture shows, because then it helps keep that tongue in. If you just do the sideways spoon feeding once, then the child can put his tongue out to help swallow the food or lick the food off of his lips. After you do it 3 times the child will hardly stick his tongue out at all after that last bite, since he has already been swallowing the food.

Try it on yourself – Feed yourself with the spoon like you normally would – your tongue protrudes forward this way. Feed yourself with the spoon sideways, your tongue is pushed back. It works so well.

**** please visit: www.talktools.com for oral motor feeding tools needed for children that have Down Syndrome, low muscle tone, oral motor weaknesses and sensory feeding concerns.






I have been taking another class offered by Lori Overland…and wanted to post pre-feeding exercises that should be used prior to your feeding sessions. These exercises are not only for children that have Down Syndrome…but also for those who present with low muscle tone. The goal of the exercises is to improve strength and mobility of the muscles needed for feeding and also for speaking.

PRE-FEEDING EXERCISE                                                                                                                      

1.   Palatal massage: the goal of the palatal massage is to maintain the shape of the palate. Find the palatal raphe:


 The palatal raphe is a rather narrow, low elevation in the center of the hard palate. You can run your tongue along the palatal raphe…starting from the bump behind your teeth…follow the palatal raphe until you get to midline. It is like you are running your tongue along a line…you should be able to feel it. The reason you are running your tongue along the raphe is because you need to find the midline point. You will know that you are midline on the palatal raphe when you have found the bump. So that will be your starting point for this exercise.

I think it is pretty easy to find the bump at the top of the palate. Remember to start your tongue behind your front teeth…and run your tongue along your palate…straight back….when you find the bump you will know that this is the starting point….the point where you will start this pre-feeding exercise with your little one.

Now…inside your little one’s mouth you will find the bump…the bump lies between the two halves of your palate. Once you find the bump on her palate….use your index finger and run the pad of your index finger down to the lateral ridge (the spot where her teeth will insert)….then roll back up to mid line to the palatal raphe…and then back down to the other side of the mouth. So to be clear…you are running your finger sideways…from the bump on the top of the palate to the lateral ridge…(the spot where her teeth will insert)

Each side should be massaged four to five times prior to the feeding. The goal of this exercise is to maintain the shape of the palate. Remember the palate fuses around one year of age.

2.  Maintaining Lateral movement of the tongue:

For this exercise you should use:  A Toothette


….be sure to cut the wings of the Toothette when working with an infant or toddler…the Toothette is too large for an infant or toddler with the wings.



An infa-dent  or A Nuk brush:   






   All of these tools can be purchased at www.talktools.com

The goal of this exercise is to stimulate the sides of the tongue to improve tongue lateralization. This means the child’s ability to move the tongue to the side. Remember this is a skill she will need for feeding and for speaking. When working on this exercise start at the back of the tongue and move towards the front of the tongue. Be sure to use four to five strokes on the left side of the tongue and then four to five strokes on the right side of the tongue. When you are doing this exercise….you should see the tongue moving to the side.

3. Maintaining Phasic Bite/Munch Pattern:

What is a phasic bite?: A neurologic reflex present in infancy where pressure on the gums causes rhythmic opening and closing of the jaw.

Use your index finger and stimulate the lower gums from back to front. You are looking to see if this caused a rhythmic opening and closing of the jaw……a munch pattern. This exercise will teach chewing skills. ( I will post over the next week or so…the chewing hierarchy….specific to exercises that should be done to improve chewing skills in little ones with Down Syndrome or with low muscle tone).

4. Pacifier Rock:

I could not find a good picture of the pacifier that you should use…just be sure it is not one that has a flat-bed on the bottom of the pacifier (the part that goes in the baby’s mouth)….it should be an elongated shaped pacifier.

With your middle finger under the jaw….and your pointer finger on one side of the mouth…in the corner…and your thumb on the other side of the mouth…in the other corner….you will be ready to help your little one.

Use your middle finger to help the jaw to come forward…and your thumb and index finger to move the lips into a pucker/kiss. You will be using your middle finger to rock the jaw back and forth….and your index finger and thumb to improve lip rounding.

5.   Tongue Bowling:

Children with low muscle tone may have a flat tongue that may protrude forward.  Stroke the tongue…start at the tip and work towards mid-line…this should create tongue bowling. This exercise should be done four to five times.
6.   Massage:      

Using your hands or the textured sensory bean bags offered by www.talktools.com

Massage wakes up the muscles…very good for children with Down Syndrome and children with low muscle tone.  Using your hands or the textured sensory bean bags offered by www.talktools.com.  The following exercises should be done four to five times:


1.       Start at the TMJ



              and move down towards the corners of the lips         .

2.      Start on the sides of the nostrils and work down towards the lips.

3.      Start under the nostrils and work down towards the lips.

Jigglers add calming and organizing sensory input, and can be used for oral exploration, reducing “fixing” in the jaw, and increasing awareness. Instructions included. Requires one AA battery which is included with the Jiggler.  However….be sure to know that too much vibration on low tone children may break down muscle tone. Be sure to consult with your licensed speech and language pathologist before using a vibrating tool.

7.   Tap and tone:

Just like if you were going to the salon and getting a facial….you will be “tapping” the child’s face with the palms of your hands….the goal is to tone and strengthen the muscles of the face and cheeks. To strengthen the lips….tap on the lips and make the “O” sound….just like in the song Old MacDonald had a farm…remember….E-I-E-I-”O”. Tapping on the lips will improve the tone and strength of the muscles of the lips and improve lip rounding.

8. Upper lip mobility:

You will be using the Toothette indicated above…found on www.talktools.com to improve upper lip mobility. Remember for infants and toddlers you may have to cut off the wings so that it is the right size for your little one. You can wet the sponge if the child does not like the texture of the Toothette.

The Toothette goes inside of the mouth….start on the corner of lips…and move the toothette under the lip to midline….repeat this four to five times…and then move to the other side of the mouth. Midline…is the middle of the top lip.

With older kids you may purchase:Vibrator & Toothettes – T alkTools®   This will add more sensory information and more likely to get mobility. With the older kids you may also use the Z-vibe….it comes with three different heads.

34


To promote upper lip mobility use the Z-vibe with the yellow head. You will be doing the same exercise indicated above under upper lip mobility. The Z-vibe adds more information. It has a firmer rubber tip. Remember to perform the exercise from corner to midline.

If the older child is resistant to using these tools…use the back of a toothbrush…use a vibrating toothbrush….some of the older children can be taught how to do this exercise on their own.

9.  Ice Stick to improve lip rounding:

Ice Sticks can be used to develop oral placement/feeding and speech therapy programs and are excellent for achieving lip rounding and lip closure. The ice stick can be purchased at www.talktools.com

In order to improve lip closure place across the lips (so the ice stick should be presented horizontally) and have the child make closure with their lips on the ice stick. You can also ask the child to kiss the ice stick to improve lip rounding. To further improve lip rounding: place the ice stick inside of the child’s mouth (vertically).Lip rounding can also be addressed with the Jigglers indicated above….turn the Jiggler on and ask the little one to kiss the Jiggler.

What if your child can NOT pucker her lips for a kiss. How can you help her with lip rounding……therapist should stabilize the jaw with her middle finger under the mandible….so you do not want the jaw to move….index finger and middle finger should be in either corner of the mouth. Since the child is not able to pucker her lips for a kiss just yet….you will be using your index finger and thumb to help her to get her lips into the pucker…being sure to keep her jaw stabilized with your middle finger. Now help her to kiss the Jiggler.

Remember…..too much vibration for children with low tone may break down muscle tone….so be sure to consult with your licensed speech and language pathologist for guidance. The vibrating tools should not be used as a toy….it should only be used therapeutically.




HYPER-SENSITIVITY AND HYPO-SENSITIVITY WHAT DOES IT MEAN:                                                             

Children with Down Syndrome typically present with low muscle tone. Children with low muscle tone may    present with oral motor feeding concerns. I have spent some time discussing Down Syndrome feeding…so please be sure to read under the Down Syndromepage for more information.

Today’s post is specifically related to two factors with regard to Down Syndrome feeding: hyper-sensitivity and hypo-sensitivity. Children with Down Syndrome typically are hypersensitive to texture…..this means that they may have difficulty in tolerating various textures. What this means is that their motor systems may have some difficulty in chewing…therefore…following the chewing heirarchy needs to be addressed (I will post on this in the next few weeks). Children with low muscle tone prefer crunchier textures…and also foods thare are easy to swallow. The crunchier foods due have to be chewed….however, their hypersensitivity is related to the textures indicated below. So remember…they have hypersensitivity to texture…and the motor system may have difficulty in chewing, however, the child’s preference will be to those hard crunchy foods. It is important to remember that their motor systems may have difficulty in chewing (that is why the chewing heirarchy is important). Down Syndrome children will prefer the harder crunchier foods….and may have difficutly with various textures as indicated above.

In my experience, I have found that one of the hyper-sensitivities may be to certain “mixed textures“, for example, a Stage 3 baby food is a mixed texture. You have the pureed food…and then bits and pieces of a more solid texture. Children with hypersensitivity may have difficulty with this mixed texture. So, I have learned that children with a hypersensitivity when it comes to eating…this hypersensitivity is specifically related to texture. Not only is the texture issue related to mixed textures…these children also typically have difficulty with the “in between textures“….that is what I call them. These are the textures that do require some chewing….however are NOT solids. Examples of the in-between textures include: soft cheeses, eggs, soft pasta (not Al Dente), deli meats, steak, chicken, vegetables and many fruits. These in-between textures are difficult for the children that present with a hyper-sensitivity feeding issue. So…to re-cap….children with Down Syndrome typically present with a hypersensitivity concern….and this concern is specifically related to their ability to tolerate the mixed textures and the in-between textures. They typically prefer harder crunchier foods….be sure though to follow the chewing heirarchy (which I will speak about)….you are following the chewing heirarchy so that you can teach chewing…..and doing the chewing exercises to help your little one with chewing.

Children with Down Syndrome and oral motor feeding sensitivities typically do NOT have a sensitivity to the Stage 1 foods and foods that do not require ANY chewing….examples of other foods besides Stage 1 foods would be and not inclusive to: applesauce, yogurt, and pudding. These textures do not require any chewing and are easily swallowed.

The next texture that can be tolerated by children with food sensitivities (in my experience)…. are hard crunchy foods. This texture needs to be first bitten with the front teeth (so children that have biting issues…a different concern…may have difficulty with this texture)….next lateralized to the side…. then chewed and swallowed. Examples of a solid texture include: cookie, cracker, pretzel, Veggie Sticks….and are not limited to these foods.

So to go back to children with Down Syndrome…they are hypersensitive to texture….so they may prefer hard crunchy foods (this food does require biting and chewing…however is comprised of one texture) and a texture like a Stage 1 that does NOT require chewing. However, children with Down Syndrome have a difficult time…due to hypersensitivity to mixed textures like a Stage 3 baby food and the in-between textures. Other foods…in my experience…that that may be difficult for these little ones include…and are not limited to the following: oatmeal (similar to a Stage 3 food), soft cheeses, bananas and soft fruits, deli meats, eggs, soft pasta (easier time with Al Dente), vegetables…..and other foods that are NOT hard and crunchy…however still require some biting with front teeth, lateralizing and chewing.

My oldest son had feeding issues and he was hypersensitive to textures…up until almost first grade….he came up with a great word to describe food that he could not tolerate: SWERBALIE. I have used that word with parents to help them understand what their little one may be thinking. For my son….he could not even look at food like a cantelope….he would gag just by the sight of it…..it looked to mushy to him.

My second son…Andrew…he is ten…he has hypersensitivity issues now…although he did not as a younger child. With him I try to follow the SOS approach when he is eating. When following this model….children are encouraged to try new foods….however they slowly work through the steps with new foods….the steps are (and have been modified a little for my son): LOOK, SMELL, TOUCH, TASTE. Remember children with sensitivity concerns may have difficulty with just looking at the new food….they may NOT be able to smell the new food….and for most…touching the new food is too much for their sensory neurons to handle. I have found in my experience as a therapist and as a parent…PATIENCE is the most important word.

Ok….let’s go back again to Down Syndrome feeding and the other word: hypo-sensitivity. This means that their sensory neurons need more information with regard to TASTE AND TEMPERATURE. They may like spicier, saltier or really sweet foods. This is because their sensory neurons actually need more information. I had a little one I was working with years ago and she was about two years of age…and loved sopressata…this is an Italian cured salami…and is definitely spicer. She loved sopressata….and ate it without any reservation. Some children with Down Syndrome and other feeding issues may have less of a reaction to foods that are colder or hotter..so we may want to increase the temperature and make foods colder than typical to really stimulate those sensory neurons. And when doing feeding therapy we may alter the taste of the food (by increasing flavor) in order to give their sensory neurons more information.

So remember….when addressing oral motor feeding with children that have Down Syndrome and oral motor sensitivity issues….the three factors to consider: texture, temperature and taste. Finally, please note that the two factors of hypersensitivity and hyposensitivity is related to the interaction between the sensory and motor system.


HOW TO REDUCE TONGUE PROTRUSION AND IMPROVE TONGUE RETRACTION                    

I am hoping that this post in conjunction with the information I have on my Down Syndrome page is helpful to those of you that are in need of information regarding Down Syndrome feeding. This post is specifically in reference to tongue protrusion and how you can reduce tongue protrusion and improve tongue retraction in children with Down Syndrome.

Using a Playtex Nurser Bottle





…the kind with the drop-ins….is the bottle to use when feeding your baby with Down syndrome.. It is important to note that when feeding your little one….you also have to be sure to adhere to the following:

1. Baby should be fed in more of an upright position with chin down…..chin should be lower than the ears. Most of us…..when feeding our little ones….feed her in more of a cradled position….with her head tilted back…..in this position her chin is higher up than her ears. We do not want that position…..be sure that your little one’s head has her chin down….ears should be higher up than chin.

2. Slow to medium flow nipple….not the fast flow. Now….if your little one has some cardiac concerns…the slow flow nipple may be too difficult for her…in the sense that she may take a longer period of time to drink the bottle…because the nipple is slow flow. My experience has been that when a little one has cardiac concerns….and she is using a slow flow nipple….she really is working extra hard to drink the formula or breast milk….and if it is too difficult for her…and she is working too hard….she may be burning more calories than she is getting. So be sure to consult with your speech and language pathologist and your little one’s pediatrician with regard to the type of nipple.

The fast flow nipples….are just too fast….and the muscles in your little one’s mouth are not getting enough of a “work out”. We want to strengthen the muscles of the cheeks, lips and the tongue….and encourage tongue retraction.

3. Using the Playtex Nurser….in the chin down position: The first step is to remove all of the air from the bottle and nipple…..and next present the bottle to your little one. The correct presentation: the bottle should be in a downward position…by this I mean that the bottom of the bottle is down…and the bottom of the bottle is lower than the top of the bottle ( a downward angle). Typically when we feed babies…the baby is in that cradled position…with head back…and the bottom of the bottle is higher up in the air…so the bottle is angled up. I want the bottle angled down.

4.You may initially need to push some of the formula or breast milk into your little one’s mouth…so she understands that she needs to really suck in order to obtain the liquid. When feeding your little one with Down Syndrome…with this bottle and in the above position…you are forcing her to use tongue retraction in order to suck the liquid out of the bottle. When drinking a bottle the typical way….the tongue protrudes during sucking. If we feed your baby in the above position with the Playtex Nurser she will use tongue retraction….as well as strengthening the muscles of the lips, cheeks and tongue. It may take her a little bit of practice…but she will get it!

HONEY BEAR CUP      

                                                                                                                     


When your little one is ready for a sippy cup…..DO NOT use the sippy cups that have the inserts…these promote tongue protrusion. I love the Honey Bear Sippy cup….which you can find on the above web-site. Your little one will have to retract her tongue just as she did with the Playtex Nurser. The Honey Bear Sippy cup is great for all kids…not just kids with Down Syndrome…..so be sure to try this with your little one. I have had little ones at four…five and six month of age (with Down Syndrome)…using the Honey Bear.