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 8, 2018

It’s Strawberry Season, Now What’s a Shortcake?

It’s strawberry season, now what’s a shortcake?

The farmers market in my neighborhood just opened for the season with a strawberry festival. I love strawberries! As a child, I picked tiny wild ones from my great aunt’s yard. Now I enjoy medium sized locally grown or gigantic shipped-in berries. My favorite way to eat them is right off the stem, but strawberry shortcake makes me happy as well.
strawberries
My grandmother and mother called traditional pie crust sprinkled with sugar shortcake. Thin, flaky, and crisp, it played well against partially mashed, sweetened strawberries and whipped cream. There’s a restaurant in my area that serves this style of shortcake two layers tall. It is divine!

I can’t say crust-based strawberry shortcake is widely known. My grandmother’s house, my mother’s house, and that one restaurant are the only places I’ve eaten it. I suppose in the strictest sense, sweetened crust fits one of the original requirements of shortcake in that it contains fat that has been cut into the flour. The only problem is that it’s not really a cake.

But is shortcake really cake or is it a scone or biscuit? The first recipe for shortcake appeared in an English cookbook in 1588, but I don’t know what it said. That makes it difficult to determine exactly what sort of crumb it had.

A quick scroll through several culinary guides failed to find mention of shortcake. Shortbread is often included, but not shortcake. Perhaps that’s because there are too many versions to narrow down a definition. Or perhaps it’s because perfectly ripened strawberries sweetened and topped with whipped cream are so good they don’t really need any sort of biscuit, cake, or crust. Anything that absorbs and delivers that scrumptious juice will be appreciated and well received.

When shortcake is mentioned in culinary articles, it is often differentiated from sponge cake. This is sort of amusing because I’ve probably been served strawberry shortcake made with sponge cake more often than any other kind.

So what’s a shortcake? Whatever vehicle you prefer to deliver sweetened strawberries and whipped cream. Most of us probably gravitate to the version of shortcake that is most familiar. I prefer pie crust to squishy cake. I’ll take a sweetened biscuit in a pinch. You may prefer a butter-rich cake or corn muffin.

Whatever you place it on, a combination of fresh strawberries and cream sweetened or not, whipped or not, will provide a delicious summer treat!

https://en.wikipedia.org/wiki/Shortcake
http://bakingbites.com/2009/09/what-is-a-shortcake/
http://www.cookthink.com/reference/1990/What_is_shortcake

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 23, 2018

I Love Brunch!

I love brunch! It sounds like elegant decadence to my ear. Say the word and in my head I see Audrey Hepburn in Breakfast at Tiffany’s – form fitting black dress, long gloves, updo, and lengthy cigarette holder. If we’re going to brunch, we get to sleep late and there are sure to be mimosas or bloody marys. I don’t know if it’s the idea of a lazy morning, the siren call of crispy bacon, or exactly what, but brunch is always appealing!

My brunch favorites lean toward the breakfast end of the menu. Bacon, eggs, grits, fried potatoes, waffles, and fruit trump roast beef, salmon, or salad for my first meal of the day. As long as the bacon is crisp and the waffles are gluten-free, I am happy with simple preparation and presentation. If the taste is delicious, I also appreciate the unique and fancy.
waffle
One of my favorite local restaurants serves poutine as a regular brunch option. Originally from Quebec, poutine is made of French fries and cheese curds topped with brown gravy. Add an egg to the top and you’ll be fortified to withstand the harshest cold weather.

When I travel to Asheville, I often choose crêpes because many restaurants in the area automatically make them gluten-free. These thin pancake-like pastries can be carriers of savory sausage & eggs, spinach & cheese, chicken & mushrooms, or salmon & ricotta. They can also be filled with cream cheese & strawberries, chocolate & hazelnut, bananas & caramel and many other sweet concoctions.

If you like quinoa and oatmeal, breakfast bowls can be hearty plant-based brunch options. Add black beans, avocado, pico de gallo, and a squeeze of lime to quinoa (or rice) for a filling Mexican bowl. Dress up oatmeal with maple syrup or coconut crystals, shredded coconut, almonds, cashews, and fresh berries. Add some vegan chocolate for added delightfulness.

When we stay home for brunch, we have eggs Ben. They’re like eggs Benedict, but made by Ben with his special hollandaise sauce. In fact, Ben & our friend Hunter had an eggs Benedict cook-off at my house a few years ago. I don’t remember who attended to weigh in on the judging, but, predictably, Ben & Hunter each contends he won. I think we need a rematch.

I’ve hosted bridesmaid brunches, wedding shower brunches, impromptu brunches and really late Christmas breakfasts that should have been called brunches. The planned events often include cinnamon rolls. I like making cinnamon rolls. I’ve made tons of them over the years. Last year, I turned some of them into bread pudding. Cinnamon roll bread pudding meets any level of excess required for your decadent brunch.

Brunch just wouldn’t be complete without a superior cup of coffee. A couple of years ago I stayed at an old hotel in a nearby city. The room was questionable, the TV reception terrible, the lobby clad in shabby grandeur, but the bacon and eggs were perfect and the coffee was superior. I went back for brunch last year. The hotel was still old and shabby and I didn’t even care. That’s how strong the draw of brunch with superior coffee can be.

You don’t have to dress up to go to brunch. You certainly don’t have to wear long gloves and large diamonds. Traditional ice sculptures, carving stations, and cooked-to-order waffles are not essential. Sleeping late and full immersion in decadence, on the other hand, are mandatory…well, for me anyway.

Happy brunching!

https://www.facebook.com/Creperie.Cafe.Of.Weaverville
http://www.ashevillebouchon.com/lecluse/
http://www.cooking2thrive.com/blog/?s=crepe