Books, Sites & Blogs

Good Books about Nutrition

Nourishing Traditions by Sally Fallon and Mary Enig

A practical, entertaining guide to a can-do diet that is both nutritious and delicious.

Gut & Psychology Syndrome by Dr. Campbell-McBride

This book is great for children who have “stomach problems.”

More books that support the GAPS diet

More Weston A. Price Books

Nutritional Websites

• ABCs of Nutrition from Weston A. Price
• GAPS Diet
• Diet and Nutrition at Super Down Syndrome

Nutritional Blogs

• The Spunky Coconut - A blog that supports the GFCF diet with lots of coconut recipes plus  hints and tips she uses to improve the health of her child with ASD through diet.
• Cultured Food Life
•  Kelly the Kitchen Kop
•  The Nourishing Cook
•  Food Renegade 
• Seeds of Nutrition
• The Complete Patient
• Kitchen Stewardship
• The Nourishing Gourmet
• The Whole Life Nutrition Kitchen
• Nourishing Days
• Local Nourishment
• Sustainable Eats
• The Nourished Kitchen
• Recipes to Nourish
• Eat Nourishing Real Food Recipes
• Whole Traditions/Raye “Raggedy” Ann
• Cooking Traditional Foods
• 100 Days of Real Food
• Weston A. Price Foundation
• Green Smoothie Girl
• Family Natural
• Mia’s Domain
• Hope For Healing
• Nourishing Treasures
• Pat’s Farmacy
• The Healthy Home Economist

Pasta with Garlic Sauce, Garbanzo Beans and Spinach

Pasta with Garlic Sauce, Garbanzo Beans and Spinach

by Jane Winans

1 pound fresh, organic spinach
1 pound gluten free pasta (tubular is best)
1/3 cup olive oil
6 garlic cloves, minced
¼ teaspoon crushed red pepper flakes
2 medium tomatoes, cored, seeded and cut into ½ inch dice
2 cups freshly cooked garbanzo beans (chick peas) or 1- 15 ounce can garbanzo beans, rinsed and drained
¼ teaspoon sea salt

1.       Clean spinach and place in a large skillet with ¼ cup water.  Cover and cook over medium heat until wilted.  Drain, cool, then squeeze dry with your hands.  Set aside.
2.       Cook pasta until al dente per instructions on package.
3.       Heat the olive oil in a large skillet over medium heat.  Add the garlic and red pepper flakes. Cook 2 minutes.  Add the tomatoes and garbanzo beans and cook 2 more minutes.  Add the spinach, salt, and ¼ cup of the boiling pasta water.  Stir well.  Cook until heated through, about 5 minutes.
4.       Drain pasta when done and put in a large serving bowl.  Spoon on the sauce and toss well.

Dinner Medley

Dinner Medley

by Jane Winans

Start with whatever organic meat you like – brown.
Add lots of healthy vegetables and sauté.
Add one of the following:

• Healthy spice and sea salt,
• Sanjay, Gluten free soy sauce, ginger, garlic and shallots
• Organic salsa, avocado and cilantro.

Example:
1)      Brown ground beef, add chopped brussel sprouts and season with healthy spice and sea salt.
2)      Brown organic chicken, green peppers, zucchini, add salsa, avocado and cilantro.
3)      Brown organic chicken, onions, broccoli, celery and snow peas.  Add ginger, shallots and sanjay gluten free soy sauce.

How I Easily Feed my Casein/Gluten/Soy/Corn/Sugar-free Toddler

How I Easily Feed my Casein/Gluten/Soy/Corn/Sugar-free Toddler

Or Jett’s Rainbow

by Andi Durkin

Note: all ingredients are organic. I buy whatever is cheapest that week. I have the broths, root vegetables and starches all ready made up and frozen into individual portions.

1) I mix his vitamins for the day into 5 small bowls. (For first thing in the morning, at breakfast, lunch, dinner and an hour before bed.)

2) I get something to hide the vitamins in: Mashed banana, sweet potatoes, avocado w/fermented ketchup, applesauce, or any organic baby food, etc. I add however much Tupelo honey (has lowest glycemic value) that I need. (I taste it so that it’s just enough that I don’t want to immediately spit it out — which works for Jett.) I mix my choice into the small bowl of vitamins for that time of day.

3) I choose a broth: chicken, beef, fish, lamb, etc. and pour about a 1/4 cup or thaw it in a sauce pan over medium heat. I add more if I want it to be more like soup.

4) Since skin color indicates the presence of different vitamins, I choose vegetables from each color of the rainbow that I didn’t already use for the vitamin mix:

ROY G. BIV (Red Orange Yellow Green Blue Indigo Violet)
So one day may look like:

A sweet red pepper for Red, shredded carrots for Orange, a chopped squash for Yellow, peas and a dollop of spinach for Green, two prunes for Indigo and roasted beet for Violet. I put them in the pot, frozen items first.

Some items I put some on top, not touching the broth, just to steam a little. Some I set aside to be given raw. Cover and heat.

Whatever color I don’t use here, I save for a side dish or dessert. It’s usually a fruit. For red, strawberry; orange a tangerine; yellow a mango; green a kiwi; blue some blueberries; indigo some blackberries; and violet some grapes.

5) I choose a moderate amount of protein: chopped turkey or chicken, beans & rice, an egg, salmon, ground beef, etc. and add to the pot.

6) I choose a starch: pink or brown rice, quinoa, or a rice or kelp noodle and add it to the pot.
6) I add a fat: chicken skin, avocado, coconut oil, olive oil, etc. and mix it in the pot.

7) I add spices: dried seaweed flakes (for iodine, etc.), pepper and pink Himalayan sea salt. And if I have some fresh herbs, I chop and add that as well. Sometimes basil, sometimes parsley, sometimes dill. Sometimes I’ll add a little curry mix, salsa, Italian tomato sauce, or fermented ketchup. Anything to make that day’s meal a little different from the day before.

I serve this to my 25-month-old Jett most of the time. I use the same process every day, but get different results each time. He loves it!

Healthy Spice

Healthy Spice

From our angel on earth, Dr. Anju Usman (-Jane)

2 tsp turmeric
3 tsp coriander
1 tsp cumin
1 tsp cinnamon
Mix well in a bowl, then place in a spice container.

Sprinkles on vegetables with sea salt and ghee.  Easy! Delicious!  Healthy!

Why I Went Casein (and Gluten Free) for My Niklas

Why I Went Casein (and Gluten Free) for my Niklas

by Kati

It started noticing that when I would breastfeed Niklas, he seemed to cry more when I had eaten a lot of dairy that day. He seemed to be okay if I just ate a little bit, though.

When he was one year old, I needed to stop breastfeeding so I gave him baby formula instead. I didn’t want to give him normal cow’s milk for many reasons. He handled the baby formula well, so I thought that everything was okay. He also starting eating some solid food which included gluten and dairy. But I noticed that he was often a cranky little boy. I felt terrible because I couldn’t understand why he was in such a bad mood so often. He didn’t have any noticeable symptoms like skin rash, loose bowel movements, etc. No “typical” symptoms that would give me a clue that it could be his diet.

So I blamed myself. Then he started to develop constant ear infections and also bad laryngitis. When I heard that some milk allergies may disturb the intestinal flora and immunity in a way that would cause infections without any other symptoms, this rang a bell. So I put my son on a dairy free diet to see if he would get better.

To my surprise, I felt I got a new son: his cranky mood wasn’t a part of his personality – he had been just feeling bad because of the dairy! So we got an easygoing, happy child after we gave up casein!

He got ear tubes at 18 months old because of earlier problems and because he had developed a lot of ear wax, but since cutting out dairy (and having tubes) he has had only one ear infection in the last 2 years. In general, he is now a happy and content little boy who is not any more sick than any other children — maybe even less!

Niklas was tested for a milk allergy at the allergy clinic. He didn’t react to the prick test nor did he have bad symptoms from the double blind test of milk formula. As an experiment, he was given dairy-based infant formula for one week.  He managed that week fine. But after it, his immunity dropped and he got sick with laryngitis again – in the middle of summer — when he normally would have been very healthy. I suspect that it was the milk that caused it.

So the allergy tests showed nothing, but if he gets creamy food, he gets a stomach ache and feels bad. Even our doctor noticed it. Medical people often do not recognize this problem of immunity etc, but I have heard of a boy whose only problem with milk is eye infections. Reflux can be one symptom,which is usually treated with medication and not a dairy free diet.

So if my child was cranky, had infections a lot, had GER (reflux) or many other symptoms, I would certainly try a dairy free diet for a while to see if it helps. Some people may add dairy back into their diet with proper enzyme therapy.

What it comes to a gluten free diet, Niklas shows some changes in his attention span and concentration if he gets a lot of gluten. He starts to act as if he is “not present” and he loses good eye contact. I am also happy I noticed that this is because of gluten intolerance (he is not celiac), because these traits are easily thought just to be “part of DS”. I am working on healing the gut with enzymes and probiotics in order to return gluten into his diet one day. Meanwhile he will continue to be on a gluten free diet as well. Whatever it takes to keep him healthy!

Banana Sunflower Butter Pancakes

Banana sunflower butter Pancakes 

– adapted from JaneCaseyskitchen.com

1  Banana
1/2 cup organic sunflower butter  (you can use other organic nut butters) or ghee
2 Eggs
2 TBSP Honey
1/4 teas Sea Salt
1/4 teas Baking Soda

Coconut oil, bacon grease, or duck fat to fry it in.  Don’t use vegetable oils they are rancid on the system and very hard to digest.

In a medium size mixing bowl, mash banana with hands or a fork.  Mix in the rest of the ingredients. Cook over a medium heat on a lightly oiled griddle. They burn easy so you may need to lower your heat a tad. Makes 10-12 palm sized pancakes.

Playing with regular play dough is too risky for kids with celiac disease, who can’t eat gluten, a protein found in wheat and other grains (and also in most forms of play dough).

Try this recipe instead, which is safe for kids because it uses rice flour and cornstarch which don’t contain gluten.

Ingredients:

• 1/2 cup rice flour
• 1/2 cup cornstarch
• 1/2 cup salt
• 2 teaspoons cream of tartar
• 1 cup water 1 teaspoon cooking oil
• Food coloring, if desired

Directions:

Mix ingredients. Cook and stir on low heat for 3 minutes or until it forms a ball. Cool completely before storing in a sealable plastic bag.

Source: Celiac Disease Foundatio

Why choose a gluten free diet for a child with Down syndrome?

Why choose a gluten free diet for a child with Down syndrome?

by Jane Winans

Why choose a gluten free diet for a child with Down syndrome?

Studies in the 1990s indicate that 7-16% of children with Down syndrome have Celiac disease.  That is a 43% greater occurrence of Celiac disease in children with Down syndrome than in children without Down syndrome.  Medical literature used to suggest that 1 in 5000 Americans had celiac disease, but in the past decade that number has skyrocketed to 1 in just 133. One might expect an updated study of Celiac disease in Down syndrome to have skyrocketed as well.  Celiac disease results when the lining of the small bowel becomes damaged from exposure to gluten, the protein found in wheat, barley and rye.   Celiac disease is detrimental to our children and can cause malabsorption which may lead to undernourishment, anemia, osteoporosis and peripheral neuropathy.  Untreated Celiac disease can also stunt growth.  Due to the high incident of Celiac disease in our children, many families have decided to follow a gluten free diet.

Getting Started

Implementing a gluten free diet may seem intimidating, but you can do it!  Start with baby steps and… “Do what you can with what you have where you are.” Ghandi   

Like many things, providing a gluten free diet felt intimidating when we first began.  I tried to focus on baby steps… every day or week trying to do something different.  First I found lists of grains and foods to eliminate and  ones Lydia could eat.  Once that was established, it was much easier and less intimidating.  We ate a lot of pasta so that was our biggest replacement.  Luckily, rice pasta is good and it was easy to find.  Lydia ate very few breads, cakes and cookies so we were lucky not to have to find replacements often.  I did purchase cookies and kept them in the freezer for holidays, and I always bring our own treats to family parties.

I recommend you goto www.celiac.com.  It is a great websitewhich includes a section on raising kids with a gluten free diet.  The resources are plentiful and are continually updated.  You can also find many gluten free products in your local grocery store and many books and websites provide gluten free recipes.  Keep in mind, processed food is processed food – even if it is gluten free.  While implementing a gluten free diet, try substituting whole foods instead of packaged food wherever you can for an even healthier diet.

Nine  years ago I had to order products on-line that are now accessible at many local grocery stores.  One day I mentioned to my sister the lack of gluten free products in our stores and also the high cost.  She found me a buying club in our area that allowed me to purchase gluten free by the case.    Remember… it takes a village!  Do you have a friend who loves to bake and would  help you bake gluten free bread?  Do you have a friend or co-worker on a gluten free diet who would share their secrets? Would your sister track down a buying club for you?

My daughter, Lydia grew up without many starches and packaged foods. Now that she’s in school and takes cold lunch, we pack almond butter sandwiches a few times a week.  Today was the first time I made gluten free bread at home.  It was easy and tastes much better than the packaged loaf!   It took  me 9 years, but like I always say “Do what you can with what you have where you are.”  (Ghandi)    Today’s baby step was making homemade bread.  Last week it was homemade kombucha, a fermented tea.  Who knows what’s next!

The Basics           

Wheat goes by many different names.  Here are other wheat products to avoid:

• Bulgur
• Durum flour
• Farina
• Graham flour
• Kamut
• Semolina
• Spelt

Avoid unless labeled ‘gluten-free’
In general, avoid the following foods unless they’re labeled as gluten-free or made with corn, rice, soy or other gluten-free grain:

• Beer
• Breads
• Cakes and pies
• Candies
• Cereals
• Cookies and crackers
• Croutons
• French fries
• Gravies
• Imitation meat or seafood
• Matzo
• Pastas
• Processed luncheon meats
• Salad dressings
• Sauces, including soy sauce
• Seasoned rice mixes
• Seasoned snack foods, such as potato and tortilla chips
• Self-basting poultry
• Soups and soup bases
• Vegetables in sauce

Certain grains, such as oats, can be contaminated with wheat during growing and processing stages of production. For this reason, doctors and dietitians generally recommend avoiding oats unless they are specifically labeled gluten-free.

Other products that may contain gluten.

• Food additives, such as malt flavoring, modified food starch and others
• Medications and vitamins that use gluten as a binding agent
• Play dough – gluten free recipe below

Watch for cross-contamination
Cross-contamination occurs when gluten-free foods come into contact with foods that contain gluten. It can happen during the manufacturing process, for example, if the same equipment is used to make a variety of products. Some food labels include a “may contain” statement if this is the case. But be aware that this type of statement is voluntary. You still need to check the actual ingredient list. If you’re not sure whether a food contains gluten, don’t buy it or check with the manufacturer first to ask what it contains.

Cross-contamination can also occur at home.  If gluten containing foods are prepared on surfaces such as cutting boards, be sure to clean them properly before preparing gluten free products.  Knives and other utensils should also be thoroughly cleaned after using to prepare gluten-containing foods. A Common cross contamination happens when a toaster is used for gluten-free bread and regular bread.

Grains and starches that are allowed

• Amaranth
• Arrowroot
• Buckwheat
• Corn and cornmeal
• Flax
• Gluten-free flours (rice, soy, corn, potato, bean)
• Hominy (corn)
• Millet
• Quinoa
• Rice
• Sorghum
• Soy
• Tapioca
• Teff

Many healthy and delicious foods are naturally gluten-free:

• Beans, seeds, nuts in their natural, unprocessed form
• Fresh eggs
• Fresh meats, fish and poultry (not breaded, batter-coated or marinated)
• Fruits and vegetables
• Most dairy products (you may wish to keep your child off casein or cow’s protein and substitute with goat milk products or non-dairy products.)

Breakfast ideas

Think outside the Starch!   Leftovers are great for breakfast!  Stir fry, medley (recipe below), chicken and rice all qualify as a great breakfast.  Eggs, fruit with nut butter, and protein smoothies also are great.  I’ve included a pancake recipe for those that need to start close to traditional breakfast before venturing to other ideas.

Banana sunflower butter Pancakes – adapted from JaneCaseyskitchen.com

1  Banana
1/2 cup organic sunflower butter  (you can use other organic nut butters) or ghee
2 Eggs
2 TBSP Honey
1/4 teas Sea Salt
1/4 teas Baking Soda

Coconut oil, bacon grease, or duck fat to fry it in.  Don’t use vegetable oils they are rancid on the system and very hard to digest.

In a medium size mixing bowl, mash banana with hands or a fork.  Mix in the rest of the ingredients. Cook over a medium heat on a lightly oiled griddle. They burn easy so you may need to lower your heat a tad. Makes 10-12 palm sized pancakes.

Playing with regular play dough is too risky for kids with celiac disease, who can’t eat gluten, a protein found in wheat and other grains (and also in most forms of play dough).

Try this recipe instead, which is safe for kids because it uses rice flour and cornstarch which don’t contain gluten.

Ingredients:

• 1/2 cup rice flour
• 1/2 cup cornstarch
• 1/2 cup salt
• 2 teaspoons cream of tartar
• 1 cup water 1 teaspoon cooking oil
• Food coloring, if desired

Directions:

Mix ingredients. Cook and stir on low heat for 3 minutes or until it forms a ball. Cool completely before storing in a sealable plastic bag.

Source: Celiac Disease Foundation >>

References

Information from Dr. Len Leshin, MD, FAAP, Copyright 1997 – 2004. All rights reserved

* Hilhorst MI et al. Down syndrome and coeliac disease: five new cases with a review of the literature. Eur J Pediatr 152: 884-887, 1993.
* Jansson U & Johansson C. Down syndrome and celiac disease. J Pediatr Gastroent Nutr 21:443-445, 1995.
* George EK at al. High frequency of celiac disease in Down syndrome. J Peds 128:555-557. April 1996.
* Gale L et al. Down’s syndrome is strongly associated with coeliac disease. Gut 40:492-496, 1997.
* Carlsson A et al. Prevalence of IgA-antigliadin antibodies and IgA-antiendomysium antibodies related to celiac disease in children with Down syndrome. Pediatrics 101(2):272-275, Feb 1998.
* Pueschel SM et al. A prevalence study of celiac disease in persons with Down syndrome residing in the United States. Acta Paediatr 88:953-956, 1999.
* Zachor DA et al. Prevalence of celiac disease in Down syndrome in the United States. J Pediatr Gastroenterol Nutr 31(3):275-9, 2000.
* Jason SR et al. Celiac disease. Current Opin in Gastroent 17:118-126, 2001.
* Carnicer J et al. Prevalence of coeliac disease in Down’s syndrome. Europ J Gastroent Hepatol 13:263-267, 2001. [study of population in Spain]
* Agardh D et al. Tissue transglutaminase autoantibodies and human leucocyte antigen in Down’s syndrome patients with coeliac disease. Acta Paediatr 91:34-38, 2002.
* Hill ID et al. Guideline for the Diagnosis and Treatment of Celiac Disease in Children: Recommendations of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition. J Pediatr Gastroenterol Nutr. 40:1-19, Jan 2005.
* Hanson T et al. Antitissue transglutaminase and antithyroid autoantibodies in children with Down syndrome and celiac disease. J Pediatr Gastroenterol Nutr. 40:170-174, Feb 2005.
* Nisihara RM et al. Celiac disease in children and adolescents with Down syndrome. (Brazilian study) Jornal de Pediatria, 81:373-378, 2005.
* Swigonski NL et al. Screening for celiac disease in asymptomatic children with Down syndrome: cost-effectiveness of preventing lymphoma. Pediatrics. 118(2):594-602, Aug 2006.
* Shamaly H et al. Tissue transglutaminase antibodies are a useful serological marker for the diagnosis of celiac disease in patients with Down syndrome. J Pediatr Gastroenterol Nutr. 44(5):583-6, May 2007.
http://www.celiac.com/articles/95/1/Down-Syndrome-Celiac-Disease-Prevalent-in-Children-With-Down-Syndrome/Page1.html
http://celiacdisease.about.com/od/celiacdiseasefaqs/f/BreastMilk.htm

http://www.celiac.com/articles/95/1/Down-Syndrome-Celiac-Disease-Prevalent-in-Children-With-Down-Syndrome/Page1.html

http://www.thebostonchannel.com/bethisrael/18793498/detail.html#ixzz1sKWXcMkM

For recipes, check out the recipes tab under "Diet & Nutrition" in the menu above.

Why Invest in Organic Food?

Why invest in organic food?

by Jane Winans

It is clearly documented that children with Down syndrome have a compromised immune system and slower metabolism.   Test results also show many kids have compromised detoxification function.  By serving organic food to your child, you support their overall health and development.  Instead of using energy to detoxify pesticides, your child can use that energy to learn and grow.

Is it really worth the money?  

Discerning how to spend limited funds is always a difficult task, regardless if your family has a special needs child or not.     When my child was very young and prone to being sick, we bought as much organic produce as we could afford.  As she got older and healthier, we used the “dirty dozen and clean 15” list provided by the Environmental Working Group to help discern what foods to purchase.  http://www.ewg.org/foodnews/summary/   It is recommended that you wash all your fruits and vegetables with white vinegar and water.

Because animals used to produce non-organic  meats, eggs and milk are given antibiotics and hormones, we buy these organic.  I found an organic farm within driving distance and purchase in bulk to keep costs reasonable.  Our organic ground beef costs the same as non-sale ground beef bought in stores.   Pressed for time?  Ask a friend, neighbor or relative to investigate organic farms and compare costs for you.

Farmer’s markets &  Community Supported Agriculture (CSA)

Great produce can be found at many farmer markets and through CSAs.  “Eat Local” initiatives are working to bring higher quality produce to families around the country and often at better prices than you find in the grocery stores.  Ask around.  Network.   A man who knew my uncle planted my daughter her own field of organic broccoli one year.  That still touches my heart.

The 90 – 10 rule:  I try to do what I can without making myself and everyone around me nuts.  The 90 – 10 rule helps me  and is something I can live with.  Ninety percent of the time we eat well, and this usually occurs at home.   The other ten percent is left for family parties, going out to eat, and other activities that are more joyful when I’m not worried about the pesticide level in our food.  Find what you can live with and “Do what you can with what you have where you are.”  Theodore Roosevelt

Resources you may find interesting

www.ewg.org – environmental working group

www.localharvest.org

A mother’s musing…… anonymous

Spring air, recognized in my childhood by the scent of lilacs and new growth, now smells of chemicals from flag littered lawns warning pets to keep off.  It burns my nostrils and hurts my heart.  Do people really value lush lawns over human health?  I wonder if they know how this affects my child with a compromised immune system and disrupted detoxification system.   I wonder if they know how this affects us all.  I need to believe they would care.   I pray for the courage to speak up…

Tips on Breastfeeding a Baby with T21

Tips on Breastfeeding a Baby with T21

by Andi Durkin

Breastfeeding was our first hurdle. I recommend reading lots of books about it before you start. My favorite is So that’s what they’re for: Breastfeeding Basics. I always wondered why a book would be 300 pages about the importance of breastfeeding. Now I understand that it’s necessary because breastfeeding is not always easy and you need as much motivation as possible.

Also, please get the numbers of a couple of highly recommended lactation specialists before you deliver, if possible. Have those numbers handy and don’t be afraid to call them. They LIVE for this stuff! They would love to help you! Call them sooner and not later. By the time I called, I was hysterical, felt like a failure and had to email instead of talk because I was crying so much. (Thank you, Kristin, for taking my 3 am call!!)

It took Jett a while to get the hang of breastfeeding because he just didn’t have much of an appetite and it took some time for him to latch on with consistent gusto. (They threatened to put him in the hospital for failure to thrive, but I begged the doctor to give me the weekend. During that weekend, it was nonstop breastfeeding and I was able to keep him out of the hospital.) But, once he started breastfeeding, he became a pro and is still at it 25 months later. (I COMPLETELY understand if you don’t want to go for this long, but as a stay-at-home mom and with Jett’s T21, I feel I need to oblige for as long as he needs it.)

According to Sara Rosenfeld-Johnson, of TalkTools, breastfeeding mothers should follow these principles:

Hold the baby in a position where his mouth is lower than his ears. Stimulate the mammary glands while the child is suckling to increase milk flow. This also enables the mother’s milk to come in stronger. As the child’s suckle strength increases, the need for gland stimulation will be eliminated. A simple change in the position relationship of the child’s mouth to the bottle/breast can improve long-term oral-motor skill levels. That one change prevents a series of abnormal compensatory patterns from developing.
Originally published in ADVANCE Magazine August 4, 1997; from Sara Rosenfeld-Johnson.

How to Breast feed to prevent common characteristics of Down Syndrome
Goal one is to change the position in which your baby is being fed. Mouths must always be lower than ears to prevent milk flow into Eustachian tubes. The bottle position is altered to introduce the nipple from below the mouth, vertically encouraging a slight chin tuck. In this position your baby draws the milk up the nipple predominately with tongue retraction. This position and retractive action prevents milk from flowing freely into your baby’s mouth. Your baby no longer needs strong tongue protrusion to enable swallowing. It is also important not to make the hole in the nipple larger.

Can babies with weak suckle draw the milk into their mouths in this position? Yes, if you don’t use standard glass bottles. Bottles with the disposable liners, in either 4-ounce or 8-ounce sizes, can be filled with either pumped breast milk or any variety of formula, and the air can be forced out causing a vacuum. This type of bottle can then be fed to your baby in an upright position. If your baby has trouble drawing the milk up because of weak suckle, you can facilitate the draw by pushing gently on the liner. This technique has been successful with even the most severely impaired babies. After a week or so you will be able to push less as the muscles will begin to get stronger.

Here’s an informative presentation about breastfeeding a baby with Down syndrome: http://breezemsprod2.tch.harvard.edu/p93272789/. You can skip the first 5 minutes of introduction and start at 5:50, if you’d like. 9:50 is where the info on DS starts.

How long should you breastfeed?
That’s totally up to you! According to the World Health Organization, exclusive breastfeeding is recommended up to 6 months of age, with continued breastfeeding along with appropriate complementary foods up to two years of age or beyond. Since breast-feeding is excellent for so many reasons, it would be great to nurse for at least 2 years to help fully develop their jaw/facial structure which is even more important in our low tone/small mouthed kids. Jett is still breastfeeding at 25 months old; I’m following his cues. (Although my husband would rather me follow his cues, or clues, or huge hints that it’s time to wean.)

What about Iron and Vitamin D3?
If “the cord” was cut after it stopped pulsing, your baby should have enough iron stored for 10 months. Otherwise, you may need to supplement with iron-rich foods starting at six months. (Please read about iron and DS before you do any iron supplementation. See Anemia Causes & Cures) Jett did show low iron so I supplemented starting at 15 months old with Floradix. His iron levels are fine now and is no longer supplemented with it.

Vitamin D3 is the only other necessary nutrient that is not found in breast milk. For Jett, a hour of Florida sunlight a day is sufficient. If you’re not so lucky, Vitamin D3 drops will also do the trick. Rule of thumb: the darker the skin, the more D3 supplementation/sunlight exposure you need. To learn more, see How Much Vitamin D3?

Problems breast feeding?
Check out the Feeding an Infant page on the Einstein Syndrome Website for more tips.

If you can’t breastfeed
Although it’s beneficial to breastfeed to help with muscle development and nutrition, sometimes you just can’t! Pump and bottle is a great alternative so that your baby will still get the benefits of excellent nutrition. Read about Bottle feeding.

If you have no choice but to feed your baby something other than breastmilk (maybe you can supplement occasionally with breast milk), check this blog post out: Healthy Alternative to Conventional Infant Formula.

The Diet Game

The Diet Game

by Andi Durkin

This page is here to help you. Please think of it as a tool to best support your dietary efforts. It’s not a bat to beat yourself up with. It’s not entitled “55 More Reasons Why I’m a Bad Parent.” Leave your guilt for your mother-in-law or your cat. We have enough to deal with!

Think of your family’s diet as a card game — we each have been dealt different cards and are playing with different players. We all do the best we can with the cards we are given. In my game, my 25-month old son is an adventurous eater, has no texture issues and has never had a cookie, ice cream or candy so doesn’t know what he’s missing. My husband and extended family are supportive of his diet and do not sabotage me behind my back. So, the deck is stacked in my favor and I can play this game with relative ease. I would venture to guess that you are playing with quite a different deck and your players may not even be willing participants! Perhaps your child will only eat six things and the idea of “drawing a new card” would cause a melt down. Perhaps the game goes really well — until you leave the table — then all bets are off!

Whatever your playing field is, you need a game plan. Let’s look to Dr. Sidney Baker — a man full of wisdom — and common sense. (I know — but he’s taken.) He suggests that we think of each diet as an experiment. And to give it a good 20 days — enough time to be able to see some results of your efforts.

He recommends using this very complicated evaluation process:

The Thumbs Test

Thumbs up:
Great! You got results you like and may want to continue.

Thumbs down:
Okay, it didn’t go so well, but you learned something.

Thumbs in between:
No need to spend more time on this — next!

So what is do-able for you? Would you be game to avoid casein for 20 days to see if it would change any of your child’s symptoms? Or perhaps you want to start small: What would happen if you switched out your child’s pasta with gluten free pasta (rice spirals, kelp noodles, tofu noodles) for 20 days? Dr. Baker would simply, and profoundly ask you to consider: “What is your next, best step?”

You know your situation better than anyone, you can’t see all the cards I am holding, and I can’t see all of yours. We are just here to support you in whatever decision you feel is best for you and your family — not to judge you. So feel free to take a peek at what dietary games your fellow caregivers are playing and see what cards they have up their sleeve! We hope this collection of articles and stories will give you some guidance and support.

If you’d like to show us your hand or share how your 20-day experiment went, please write to options4DS@gmail.com. We’d love to hear your experience with these diets in particular: Lactose Free, Specific Carbohydrate, Sugar Free, Yeast Free, Allergy Elimination, GAPS, The Body Ecology Diet or the Paleolithic Diet.