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Wednesday, July 31, 2013

Coconut Oil for Trisomy Kids - Increased Babbling and Concentration?! You bet!

Updated 8/18/13 to add info regarding coconut intolerance/allergies.

At four years old, the only thing Rebekah verbalized was the same "ahhhhhh, ahhhhhh" noise she has made since she was little. We have spent a lot of time trying to get her to make different sounds and move her mouth in different ways. We do lots of oral stimulation and she loves to watch our mouths when we talk and will even touch our lips. But I had lost hope that she would say anything more than "ahhhh" because years of effort have not produced any different sounds. And we do work with her in this area daily!

So on my Trisomy 18 Mommies Facebook Group (which is for all rare trisomy parents, not just T18), a T13 mom was discussing her daughter's care and mentioned that she gives her 3-4 half teaspoons of coconut oil per day and she said "mama" after several weeks of coconut oil. She went on to say that the verbalization became more frequent and meaningful after adding in cranial sacral therapy. We already do periodic cranial sacral therapy for Rebekah (which I LOVE and highly recommend!! It helped early on tremendously!), so I was very interested in the coconut oil.

I researched it online and found some very interesting links. Most are related to the use of coconut oil for Alzheimer's patients. No, Rebekah doesn't have Alzheimer's. But... the premise is that Alzheimer patients have brains that have problems getting "fuel" and the brain degenerates. Dr. Mary Newport looked into providing her husband, suffering from Alzheimer's disease, an MCT fuel that would bring about a mild state of ketosis and allow the brain to process the "fuel" and function better. If you read her work, you'll get into a whole bunch of scientific information about MCT fat (medium-chain triglycerides) and ketones which I won't get into. But... if you read enough of it and know enough kids in the trisomy community, many kids with severe epilepsy have benefited from a Ketogenic diet which has to do with ketosis, MCT fats, and changes in brain function as a result. So this is all enough "evidence" for me to give it a try! There isn't really anyway I can harm my daughter by trying coconut oil, other than maybe adding a few pounds. And coconut oil has been used for centuries because of its medicinal value. :-)

Now I cannot provide any links to using coconut oil for speech. There are several supplements out there that are supposed to be good for speech development including Fish Oil and a supplement called Speak. But we had issues trying fish oil with Rebekah. She gets a suggested daily amount, but doesn't seem to tolerate the larger quantity prescribed for "speech" and cognitive improvement. What I can offer is anecdotal/parent experiential info. About a month after taking 1 tsp of coconut oil per day, Rebekah started verbalizing more sounds. In the same week, she began saying "dadadadada", "gagagagaga", "bababababa", and "mamamama". She is also experimenting more with sound influctions and her concentration/trainable time has increased a lot. She is more alert, and more interactive. Other people have recognized the change over a short period of time. Coincidence? Maybe. But other trisomy parents are reporting similar experiences. While not scientific, parent experiential data goes a long way to creating the bases necessary to encourage research on a given topic. So far, I haven't heard of anyone complaining of side effects or negative reactions to adding coconut oil.

What We Use: 

We use organic virgin coconut oil. Some are labeled extra virgin. There really isn't a difference (like there is with olive oil). Virgin coconut oil can be cold (expeller) pressed, or wet-milled. Both use no heat and no chemicals. Do not buy the cheap coconut oil you find in grocery stores that is "refined". The refining process uses harsh chemical process to deoderize the oil so that it doesn't taste and smell like coconuts. This process also reduces antioxidants per serving. Wet-milled would probably be the best type to purchase, but it can pretty much only be found online. I purchase cold-pressed oil locally and I am currently using the Vitamin Shoppe's organic virgin olive oil. I have heard that you can purchase a good size container, reasonably priced, of Nutiva at Costco and Sam's Club. It is also an organic, virgin, cold-pressed coconut oil. I am not a brand-snob. I am sure there are many other good brands out there as long as it is organic, virgin, and unrefined.


An adult dose referred to in the articles for Alzheimer's patients is 40 ml or 2.7 T. Rebekah weighed 26 pounds when we started. I used a conservative dose of 1 tsp per day. I am currently working up to 2 tsp per day, but we do not do this consistently as she has gained three pounds over the course of 3 months and the extra calories are probably the culprit. Ironically, coconut oil is supposed to help with weight loss (and memory!), so I may be trying to incorporate it into my own diet!

Our Process of Delivery for G-tube Button:

Rebekah has a mini-one button g-tube and we can use monoject 6ml syringes right into her button. I administer 1 t of coconut oil via Rebekah's gtube with a water bolus in the evening. I do it separate from medicines and feed. The second dose is given in the morning, also separate from feeds and meds. I plan on eventually blenderizing Rebekah's food and will probably incorporate some of the fat into her feeding at that time when I get the okay from a nutritionist.

Coconut oil is solid at room temperature! It becomes a liquid at about 75+ degrees. In order to get the oil into syringes, I scoop it into a small glass and place it inside a bowel of hot water (not getting the water into the glass with oil). After a few minutes, I stir and it is usually liquified. Use hotter water if it isn't melting. Do not microwave or use boiling water as coconut oil doesn't withstand high heat and you do not want to break the oil down and reduce the antioxidant benefits. I draw it up into syringes for the week in 5 ml (1 t) amounts. Each time I want to administer the oil to Rebekah, I simply set the syringe in a cup of hot water for a few minutes, put it into the g-tube, then flush with at least 30 cc (1 oz) of water. I flush with a plunger on the syringe to make sure there is enough pressure to wash the oil down.
It is very important to liquefy the oil and flush well or YOU WILL CLOG THE G-TUBE!! If things slow down, try giving an ounce or two of pepsi or coke to break down the clog. Properly preparing the oil and flushing immediately after delivery should prevent buildup in the gtube button mechanism.

Hopefully this information is useful to some families. If so, I would be grateful if you would please post a comment, share my blog, and "like" Rebekah's Facebook page.  If you pursue using coconut oil for your trisomy child, please join us on the T18 Mommies Facebook group and tell us your experiences! We have several medical professionals on our group and would love to eventually have a medical paper written on the use of coconut oil in our kids. Also, if we continue to see positive responses, Hope for Trisomy will eventually add all of this information into a H.O.P.E. (Helping Others through Personal Experiences) Database that will be designed to encourage medical research based on parent experiential data.

Please remember, this blog is not meant as medical advice. If you choose to make any dietary changes to your child's diet as a result of this information, PLEASE discuss all changes with a doctor/nutritionist first! Adding supplements (such as Speak) when supplements are already being given can result in vitamin toxicity. Adding fat calories and certain supplements can disrupt absorption of certain vitamins and minerals. Adding fat calories can disrupt the balance of a nutritiously balanced plan (1 tsp of fat = 40 calories and for a child on a small volume diet, an extra 40 calories of fat is significant). 
It is important to know and recognize the signs of a coconut allergy. Coconuts are considered a "nut", so anyone with a tree nut allergy should procede with caution. Less severe is a coconut intolerance. Click here for signs and symptoms of intolerance

Other useful links on brain-development for your intellectually disabled child:

8/18/13 Update:
In addition to coconut oil, coconut milk can be added to the diet. This is more palatable for oral eaters. But it takes a lot more coconut milk to get enough of the coconut oil fats for the desired serving. I have no recommendation on quantity, check with your nutritionist.
Some people have coconut allergies and intolerances, especially if there is a known tree nut allergy. If digestive issues get worse, stools contain white areas or become colorless (due to going through the digestive tract too fast and lack of bile/absorption issues), etc., then stop using the coconut oil/milk immediately. Spreading out the oil or milk across multiple servings might help if it increases motility a little too much. Also, it looks like some celiacs are allergic to coconuts too. Here is a great summary on coconut intolerance.

Tuesday, July 30, 2013

It's a bird! It's a plane! It's TinySuperhero Rebekah!!

I can not even begin to formulate the words for the amount of love and admiration I have for my daughter Rebekah. From my pregnancy, to her first day on earth, to 6 weeks old when she was trached, to all her hospitalizations, and through each of her health challenges...there has never been any doubt that this little fighter was sent on earth to share a message of hope and faith. She has been a warrior through it all.  There is no doubt in my mind that Rebekah is a Tiny Superhero! And we received her official TinySuperheroes cape to prove it! 

Rebekah looked ready to take off and continue her official job changing hearts and proving she is more than an "incompatible with life" label! 

TinySuperheroes seeks to empower Extraordinary kids — one cape at a time. We donate capes to Extraordinary TinySuperheroes who exemplify strength and determination as they overcome illness or disability. Once these Extraordinary TinySuperheroes are comfortable in their new capes, we feature them on our blog, in hopes of giving them a voice, their illness or disability a face, and the world the opportunity to stretch.

What an amazing way to inspire others and bring a little hope and fun into the life of a child facing great challenges!  A huge THANK YOU to Robyn for creating this program for all the TinySuperheroes out there! Please consider supporting their efforts!

I have to brag on Robyn for a moment about the quality of her capes too. It is obvious that love and care go into the making of each personalized cape! I was expecting just a little cape, but this one can make anyone fly! It was soft, and thick, and beautiful! Even the inside of the cape is designed. 

It even came with a personalized message just for Rebekah!
I think Robyn deserves her own superhero cape for all of her efforts! For more information on Tiny Superheroes, please visit their website or Facebook page

Rebekah has always been our hero, but now she can wear her official cape and show the world what we've known all along.  Rebekah can also now be a TinySuperhero ambassador for Trisomy 18 Awareness! Yay!

Thank you TinySuperheroes for making a difference!
Rebekah Faith - Our TinySuperhero for Trisomy 18 Awareness!