Archive for ‘Uncategorized’

May 16, 2018

Feeding An Infant With Down Syndrome Can Require Tough Choices

Feeding an infant with Down Syndrome can require tough choices. I’m writing this post between trips to the hospital to see my new granddaughter, EM, and taking care of her 22-month-old brother, DJ. EM was born on April 24 and had her first heart surgery May 1. She’s currently living in CVICU trying to learn to eat from a bottle while struggling with oxygen levels and respiratory rates the doctors can’t quite regulate. Alongside the significant medical events, the fact that she has Down Syndrome feels somewhat like an afterthought.
room
There’s so much equipment, so much beeping, and such a high level of activity in EM’s room, it’s impossible to simulate the typical newborn experience. Soft soothing sounds, cuddling, and nursing are often limited, sometimes impossible. Everything is geared toward surviving.

Critical to survival outside the hospital is EM’s ability to take in nutrition. Right now she is being fed breast milk through a feeding tube. Twice a day, she attempts to nurse from a bottle. We’re lucky. Her sucking instinct is still strong, but a side effect of the surgery was damage to her vocal cords and now she cannot swallow breast milk. She needs something thicker.
feeding
If you’re interested in healthy eating, good nutrition, and real food, you probably agree with the American Academy of Pediatrics that breast milk is superior in providing nutrients for rapidly developing bodies and minds. A child with Down Syndrome already has some obstacles, so superior nutrition seems especially important for EM.

The problem is, how do you prioritize getting breast milk and being able to swallow? It seems like the intuitive idea is to thicken breast milk with some natural substance. You’ll find this idea promoted on plenty of websites.

As it turns out, thickening breast milk safely and effectively isn’t as easy as it sounds and our doctor doesn’t feel comfortable with any of the thickeners available on the market. There’s a lack of data showing gel and gum thickeners are safe for use in infants. At least one of these products has been associated with necrotizing enterocolitis, a bacterial infection of the intestine which can cause death of intestinal tissue possibly leading to blood poisoning (1).

Some web forums will recommend thickening breast milk with rice cereal or oatmeal. This may work for feeding through a G tube (feeding tube), but is impractical for nipple feeding in an infant with difficulty swallowing. The enzymes in the breast milk quickly break down the cereal. These infants eat slowly. The purpose of using cereal to thicken is defeated soon after a feeding begins.

What that means for babies like EM, is they must rely on formula thickened with rice cereal or oatmeal. Our occupational therapists use rice. They conducted a swallow study through which they determined the consistency of nectar is EM’s best option. I have no idea how to describe the consistency of nectar, but they’ve converted that to mathematical ratios so we’ll know how to create it.

If you have a baby with Down Syndrome and difficulty swallowing, you may have some difficult decisions to make. Will you switch to thickened formula and supplement with a few drops of breast milk each day to provide antibodies while working toward the possibility of breast milk alone? Will you give up pumping and switch to thickened formula until you can begin solids? Will you thicken with rice cereal or oatmeal? Will you try to stay in the hospital longer to see if feeding can progress or will you accept a G tube and/or portable oxygen to go home sooner?

It’s a tough spot to be in. All you want is to provide the best possible nourishment for your child so he/she can develop and you can’t use the most nutritional food available because the baby can’t swallow it. And there are other considerations.

Research has shown a higher incidence of Celiac Disease in patients with Down Syndrome than in the general population — possibly as high as 18.6% as compared to 1%. Currently, the US does not screen infants with Down Syndrome for Celiac Disease, and thickening formula with oatmeal could be harmful to a baby with undiagnosed celiac disease.
formula
The issues don’t end there. Rice cereal may contain arsenic. Some brands of formula have ingredients like soy or gums including carrageenan which is banned from infant formula in Europe per recommendations from the World Health Organization and the United Nations.

With my children, I was adamant about only feeding breast milk for the first 6 months and then introducing foods one at a time. I felt really strongly about it. As it turned out, this process helped us quickly determine that each of them had an allergy to cow’s milk. My middle grandson shares this allergy. None have suffered ill effects at length.

This is often not the case. Many children endure sneezing, coughing, congestion, swelling, nausea, vomiting, dizziness, tummy pain, rashes, or diarrhea for months or years due to food sensitivities. It can be difficult to pin down the culprit.

Of course we don’t want any of these complications for an already vulnerable infant, but we have to keep things in perspective. If a baby has congenital aortic valve stenosis, immediate surgery may be required. Although surgery will interrupt feeding, it will only be recommended in order to save the baby’s life. If that surgery leads to extra difficulty with bottles if is unfortunate, but choosing feeding over surgery makes no sense.

Babies with other common heart defects associated with Down Syndrome will tire easily when nursing and may have to be fed more frequently. Some of these babies will have surgery when they’re a few months old. This can help endurance, but may detrimentally affect swallowing. Still, surgery is a better option than the extreme fatigue experienced without it.

Not every baby born with Down Syndrome will need heart surgery, but most will have less neck and muscle control than other babies. They may also have a thicker tongue. This combination can make eating difficult. Breastfeeding may be possible although proper latching may take some time and patience.

Bottle feeding poses similar latching problems, but has the advantage of a variety of nipple options and the possibility of dispensing thickened formula if your baby tends to aspirate breast milk. A swallow study may be needed to determine the best solution.

The overall goal has to be getting nutrition into the baby’s system. If we do not accomplish that, it doesn’t matter what we’re feeding. When EM can finish a tiny 10 ml bottle, it feels like such a triumph that it’s hard to be upset by the fact that there’s formula and rice cereal in it.

Sometimes reasonable, healthy goals don’t line up with available options. This can be frustrating and difficult to accept, especially if we’re planners. Remaining a flexible advocate for your baby when presented with difficult choices requires courage, character, and grace. It is not easy, but it is important.

1)https://well.blogs.nytimes.com/2013/02/04/warning-too-late-for-some-babies/

https://medical-dictionary.thefreedictionary.com/necrotizing+enterocolitis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5535317/

https://www.ncbi.nlm.nih.gov/books/NBK52687/

https://www.ndss.org/resources/the-heart-down-syndrome/

May 1, 2018

Could Ghrelin be my Hunger Gremlin?

Could ghrelin be my hunger gremlin? For years I’ve been wondering whether my hunger sensor is broken. I can end up with all the symptoms of low blood sugar before I ever feel hungry. On the flip side, I can eat and eat and never feel full. Most likely, there’s a communication problem between my celiac damaged gut and my brain. The question is, what’s the problem and can it be fixed?
gremlin
Asking this question led me to some reading on the hormone ghrelin. I’ll keep the information here simple, but have placed some links below if you’d like to read about the function of this multifaceted hormone in greater detail.

Initially, I ran across information that indicated ghrelin is known as the hunger hormone. It activates its receptor, growth hormone secretagogue receptor (GHS-R), to regulate nutrient sensing, meal initiation, appetite, fat deposition, and growth hormone release. This sounds related to my hunger sensor concern. Perhaps ghrelin is my hunger gremlin. In order to find out, I had to keep reading.

Scientific literature now suggests its functions go well beyond those related to simple appetite stimulation. Ghrelin has been increasingly recognized as having a role in regulating many organs and systems such the process of creating glucose from non-carbohydrate sources (gluconeogenesis) by inhibiting insulin secretion. It can also regulate energy expenditure by signaling a decrease in heat in the body.

This hormone provides a measure of cardioprotection by reducing sympathetic nerve activity which increases the survival prognosis after a heart attack. That doesn’t sound like gremlin activity. That sounds helpful. It prevents muscle atrophy — also helpful. In spite of all these helpful functions, Ghrelin has a gremliny side. It may promote cancer development and metastasis.

And it seems that ghrelin prevents excessive anxiety under conditions of chronic stress. Now we could be getting somewhere. My early years were filled with enough chronic stress to wear out whatever mechanisms were regulating my stress levels. Still, I don’t have enough information to quite put the pieces together to figure out why my hunger sensor is off.

It’s possible that in the future, ghrelin-related drugs will be produced to help with my problem and many others. The wide-ranging roles of ghrelin and GHS-R make them likely targets for drug development.

A paper has already been published showing that in rats ghrelin can alleviate disturbance of glucose and lipids caused by consumption of the party drug ecstasy (MDMA). Sounds like this could lead to a drug to fight the detrimental effects of a drug. That can either be good or bad, depends on how you look at it.

With all my reading I learned a lot, but I did not find a definitive answer. I don’t know if the problem with my hunger signals is primarily in my brain, my gut, my adrenal glands or somewhere else. I still don’t know whether ghrelin is my hunger gremlin.

http://theconversation.com/chemical-messengers-how-hormones-make-us-feel-hungry-and-full-35545

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4049314/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3273630/

https://www.ncbi.nlm.nih.gov/pubmed/22535766

http://acta.tums.ac.ir/index.php/acta/article/viewFile/6420/5025

https://www.ncbi.nlm.nih.gov/pubmed/22521145

April 12, 2018

Free-Range Grazing in My Kitchen

My family just spent a couple of days free-range grazing in my kitchen. That wasn’t exactly what I envisioned. All I wanted to do was have a large pot of something prepared before my out-of-town guests arrived so that there was food within reach if anyone got hungry.

I don’t know about your family, but you don’t ever want mine to get hungry. We don’t just get hangry, we go ballistic. It is not a pretty sight!

I settled on beef stew and bought stew meat, small purple and white potatoes, various colors of carrots, and boiling onions. So that my sauce would thicken on its own, I coated the meat with a mixture of corn starch, tapioca starch, sweet white sorghum flour, garlic powder, salt, and black pepper before browning it in olive oil.

A couple of hours later, I had traditional beef stew boiling on the stove and a plane to meet at the airport. The crew arrived hungry and started on the beef stew immediately. I threw together some cornbread. All was well.

The next morning, two more sections of the family would arrive. Instead of fixing breakfast while the LA crowd slept, I made pasta sauce enhanced with salami and pork chops with rice. At the time I thought I was prepping for the following days. That’s not how it worked out.

Somehow, as the crowd gathered food started disappearing. I brought out the left over stew and cooked gluten-free pasta to add to my sauce. Before long everyone had a plate of something. A few hours later, everyone had a plate of something else.

The snack bucket I had stocked with gluten-free pretzels, trail mix, peanut butter, crackers, and chips began to empty. Green banana eaters and ripe banana eaters grabbed bananas. The left over cornbread got slathered with honey.

Food disappeared in waves. I ran out of bowls. We grabbed mixing bowls. I cooked frozen gluten-free pizza to fill in the pasta gap once the pasta was gone. The extra salami not used in pasta sauce ended up on crackers.

The kids played, we laughed, and no one ever got hungry. In fact, no one even got fussy much less hangry. Eventually, the dishes got washed. And after a couple of days of free-range grazing, most everyone went home to graze in their own kitchens.

I still have some clean-up to do, but it was a great visit proving a little food can go a long way toward building happy families!

April 3, 2018

Spring is for Renewal – Even in the Kitchen!

Spring is for renewal – even in the kitchen! The winter season is hanging on here and there, but the spring growing season will soon arrive with wild contributions of poke salat, dandelion greens, and lamb’s quarters.
lettuce
Of course you’re not required to eat from your yard. Farmers markets, food co-ops and select grocery stores will fill vegetable bins with leaf lettuce, spinach, chard and kale. Fresh vegetables deserve a fresh presentation now and then and spring feels like the proper time for renewed inventiveness in the kitchen.

When I was growing up, I couldn’t wait to pick leaf lettuce from the garden my grandmother planted at our farm. It was so tender and flavorful, nothing like an iceberg lettuce wedge which I only really appreciate when drenched in bleu cheese dressing topped with bacon pieces. For years, it was the only lettuce I knew. (How lucky was I?)

The vegetables we grew were what we ate. My mom wasn’t going to drive into town to buy different vegetables from the store when we had perfectly good ones peeking through the dirt across the driveway. Of course, we didn’t want to eat the same thing every day, so necessity became the mother of invention. New combinations or cooking methods developed on the fly.

A few years ago when I first purchased a share in an organic farm, I noticed that a similar thing happened in my kitchen. Rather than plan meals and make a shopping list, I was suddenly planning dishes based on the surprise ingredients I received each Friday when I picked up my share from the farm. Not knowing in advance what I would get made the experience feel like a cooking adventure. It renewed my sense of creativity in the kitchen.

Now, when the weather warms, I can’t help but feel an excited anticipation for the arrival of fresh tender greens, small green onions, beets, peas, asparagus, and broccoli. I love the bright colors! I love the flavors! And I love having a chance to think of new combinations!

I was thinking about giving you some recipes next, but that might keep you from the fun of creating your own. I would never want to rob you of fun! Instead, here are the top 8 ingredients I like to have available to pair with fresh veggies:

Avocados
While they’re great for soooo many things, it’s not always practical to keep an avocado in the kitchen. I can’t tell you how many I’ve thrown away because I wasn’t paying enough attention to the changing level of ripeness.

Now I keep Wholly Guacamole avocado minis on hand. I can use them in anything requiring mashed avocado without worrying whether they’ve gone bad.

Goat Cheese
The light creaminess of goat cheese won’t overpower even delicate garden flavors.

Boiled Eggs
Keeping a few boiled eggs in the refrigerator comes in handy for salads and casseroles as well as pasta dishes.

Fresh Ginger
Grated fresh ginger is delicious with beets or green beans and can give salad dressing a kick.

Mint
Any fresh herb could make this list on a given day, but today I like mint. Tomorrow, who knows, I may like cilantro.

Mirin or Rice Vinegar
Mirin is a rice wine with a light sweet flavor. Both mirin and rice vinegar add light acidity to a dish or dressing.

Toasted Pumpkin Seeds
I buy hulled pumpkin seeds and toast them in the oven with a little olive oil spray and salt. They bring a satisfying crunch and earthy flavor to salads. They’re great by the handful too.

quinoaQuinoa
I like the texture of quinoa. It works great as a base for a Buddha bowl or a salad and it has a higher protein-to-carb ratio than rice.

With these ingredients, or your own favorites, you’ll be well equipped for a variety of spring culinary creations. Inspiration for combinations can come from anywhere — accidentally tasting two things together on your plate, a dish you’re served in a restaurant, something you remember from childhood, a recipe you want to vary, a cooking show, a painting — literally anything!

This is the kind of post that makes my sister crazy! She would be much happier with an actual recipe. I want her to learn to play with flavors. Mostly, I want her to have the pleasure of discovering something new, delicious, and totally unexpected that she created. I want that experience for all of us! It feels so great on so many levels!
I feel so grateful that spring offers the bounty for such opportunities over and over and over again! It truly is a time of renewal.

https://www.eatwholly.com/products/chunky-avocado/wholly-chunky-avocado-minis/