Archive for ‘Uncategorized’

July 16, 2018

Here’s an Idea for an App

brainHere’s an idea for an app: Wouldn’t it be great if there were a smartphone app that could scan my tummy & tell me why it’s hurting? Is it a stomach virus, gluten exposure, FODMAP related, lactose intolerance, corn intolerance, salmonella, too much guar gum or carrageenan, natamycin, not enough fiber, too much fiber, the frequency of meals, or the fact that my sister is coming to visit? I’m willing to do whatever it takes to make it stop hurting. The problem is, it’s often difficult to determine what that is.

I was recently part of a team that reviewed a pilot research grant for a study of the effectiveness of an app vs traditional treatment. While we ultimately chose not to fund that particular grant, I see great possibilities in the future of apps to assist healthcare professionals with diagnosis and treatment of disease and chronic conditions, the physical manifestations of trauma, and mental health issues in general.

While the human element offers insight that may be missed by technology, it also brings inherent bias and inconsistency. In the 1960s, the Oregon Research Institute set out to study how experts rendered judgments. Lew Goldberg, a psychologist, developed a case study in which researchers gathered a group of radiologists and asked them how they determined from a stomach X-ray whether a patient had cancer.

The doctors indicated that there were seven major cues that they looked for. In an effort to create an algorithm that would mimic the decision making of doctors, the researchers created a simple algorithm in which the likelihood of malignancy depended on the seven cues the doctors had mentioned, all equally weighted.

Researchers then presented the doctors with X-rays from 96 different individual stomach ulcers and asked them to rate each one on a seven-point scale from definitely malignant to definitely benign. Without disclosing what they were doing, the researchers showed the doctors each ulcer twice with the duplicates mixed in randomly so that the radiologists wouldn’t notice the duplication.

All data were transferred to punch cards and sent to UCLA for computer analysis. When UCLA sent back the analyzed data, it became clear that this simple computer model was surprisingly good at predicting the doctors’ diagnoses. Even more surprising, the data showed that the diagnoses were all over the place. In spite of the fact that they were trained experts, the radiologists didn’t agree with each other. In fact, they often didn’t agree with themselves. Every single doctor had sometimes contradicted his own diagnosis when given a duplicate X-ray.

The researchers also found that clinical psychologists and psychiatrists deciding whether it was safe to release a patient from a psychiatric hospital wildly differed from each other in their determinations. Further, those with the least training were just as accurate in their judgments as those with more training.

The Oregon researchers then tested the hypothesis that the simple computer model they had designed might be better than doctors at diagnosing cancer. Turns out, the algorithm outperformed even the single best doctor in the group of doctors being studied.

What Goldberg came to realize was that doctors had a good theory of the cues to look for in diagnosing cancer, but in practice they did not stick to their own ideas of how to best diagnose. They tended to weigh things differently. As a result, they were less accurate than a computer model.

Given our current reliance on experts to diagnose, this research isn’t particularly reassuring; however, it does bode well for the inclusion of artificial intelligence in diagnostic procedures. That’s right, just the sort of technology that could be deployed by an app on my handheld device.
floating apps
Here’s an idea for an app

A decade ago, I attended the Game Developers Conference in Austin, Texas. There were sessions on massively multiplayer online (MMO) games, animation for video games, avatar development, and artificial intelligence in video games. I remember thinking as I sat through one of the sessions – the highest and best use of characters in a game who can learn from conflict would be to develop “games” or tools for families to learn to resolve conflict and improve communication.

If I create an avatar that behaves like me at first, but learns better ways to navigate specific situations, I can learn to improve my game, i.e., my life. With the distance of “playing” myself, I gain perspective. I still think there’s great potential for emotional and social growth applications.

Here’s an idea for an app

A couple of months ago, I spoke to the Trauma Institute & Child Trauma Institute in Northampton, MA about a new progressive counting method used to treat PTSD and the effects of childhood trauma. Essentially, the patient verbalizes their first chronological memory of trauma while the therapist counts. This process continues until the distress associated with that memory is resolved. Then the patient moves on to the next distressing memory and repeats the process.

I’m sure it’s a little more complicated than that, but my first thought was – I wonder if you can make a phone count out loud? If so, it seems like a lot of this could be done with a smartphone. Maybe you’d do a couple of sessions with a practitioner at the beginning and periodically thereafter, but the rest could be done in the safety and comfort of your own home. We need an app for that.

Well researched and well designed apps have the potential to propel us forward. Whether or not they include my ideas, I’m excited about their incorporation into medical and mental health practices.

http://www.ori.org/scientists/lewis_goldberg

http://www.ori.org/

http://psycnet.apa.org/record/1970-12828-001

http://michaellewiswrites.com/#top

http://www.childtrauma.com/

http://www.gdconf.com/

http://www.cooking2thrive.com/blog/make-it-easier-to-stick-to-your-eating-plan/

June 11, 2018

Lactose Intolerance and Celiac Disease Go Hand-in-Hand

If you have Celiac Disease, it’s good to be aware that lactose intolerance and Celiac Disease go hand-in-hand. When your gut is healing, it’s sometimes hard to determine where intestinal distress originates. This can be frustrating when you’re diligently eliminating gluten from your diet, but still experiencing symptoms. Before you’re tempted to give up on a gluten-free lifestyle, perhaps it’s time to explore the possibility of lactose intolerance.
lactose
Lactose is a sugar found in milk. This disaccharide is composed of two simple sugars – glucose and galactose. Our bodies use an enzyme called lactase to break down glucose. Lactase is secreted by the villi in the intestine. We produce more of this enzyme as infants because human milk is high in lactose, but some adults produce enough lactase to tolerate milk. Others do not. Those with Celiac Disease may have significant damage to the villi in the intestine. This can affect lactase secretion resulting in secondary lactose intolerance.

How do I know if I have lactose intolerance?

The symptoms of lactose intolerance include abdominal pain, bloating, gas, gurgling and rumbling, diarrhea, and nausea that appear on average from 30 minutes to two hours after consuming milk or milk products.

Depending on your sensitivity, you may not recognize that milk and milk products are causing the problem. The connection may not be as direct as drink one glass of milk = all symptoms appear. Your symptoms may be related to the amount of lactose you consume.

One cup of whole milk contains approximately 12 grams of lactose. That 12 grams may not cause symptoms, but an added bowl of ice cream may put you in distress.

Can I still drink milk?

Drinking milk may make you miserable, but it does not cause damage to your intestine even if you’re lactose intolerant. If you want to drink milk, but don’t want to take the risk of embarrassing symptoms, there are lactose-free dairy products available. Another option is to increase the lactase in your system by taking a lactase enzyme pill.
lactaid
What should I avoid?

To limit your lactose intake, avoid:
Milk
Cream
Buttermilk
Sour Cream
Ice Cream
Sherbet
Evaporated or Condensed Milk
Hot Chocolate Mixes
Milk Chocolate
Malted Milk
Cream or Milk Stout (beer)
Soft and Processed Cheeses like ricotta, cottage cheese, cream cheese, Farmers cheese, queso fresco, cheese foods or cheese spreads
Cheese dip
Yogurt (unless you make it and let it ferment for at least 24 hours)
Whey
Gravy
Cream Soups
Alfredo Sauce
Béchamel
Instant potatoes
Mashed potatoes (unless you make them)
Bread, muffins, biscuits, rolls, pancakes, waffles, and crackers (read labels)
Ranch dressing
Cheese flavoring (read labels)
Other creamy salad dressings (read labels)

Can I have any dairy products?

Some dairy products have minimal amounts of lactose and are fine to consume. These include butter, aged cheeses like cheddar, Parmesan, provolone, or Swiss. Homemade yogurt that is allowed to ferment for 24 hours will break down all of the lactose into unharmful lactic acid. Fresh cheese made by draining this yogurt is also safe to consume. When in doubt, read the label, ask the chef, or make it yourself.

The easiest way to know whether your food contains dairy products is to make it yourself. In a restaurant, you can ask the chef or baker. If you have Celiac Disease, you most likely have lots of practice with this. You are also most likely an excellent label reader and are aware that milk is one of the top 8 allergens required to be listed on packaged products in the US.

It’s always disappointing to consider eliminating another category of foods if you’ve already eliminated gluten. At least with lactose, you have the option of taking enzymes to counteract the symptoms.

I’d have to say, I hate a stomach ache enough that I’m willing to endure lots of diet revisions in order to avoid one. I can’t think of a single roll, doughnut, cake, or even ice cream (and I love ice cream) worth the pain.

If you have Celiac Disease and continuing pain, it’s good to remember that Celiac Disease and lactose intolerance go hand-in-hand. This could be the secret to ending your abdominal pain.

https://www.niddk.nih.gov/health-information/digestive-diseases/lactose-intolerance

https://en.wikipedia.org/wiki/Lactose

https://www.drugs.com/cg/lactose-free-diet.html

https://en.wikipedia.org/wiki/Disaccharide

https://www.fda.gov/Food/GuidanceRegulation/GuidanceDocumentsRegulatoryInformation/Allergens/ucm106890.htm

June 4, 2018

Make Sure You Get Your Share of Prune

When you’re in New York City, make sure you get your share of Prune! When I was reviewing this year’s James Beard Award winners and saw Gabrielle Hamilton’s name, I was reminded of my first visit to Prune.
prune
It was 2003 or 4. My boys and I were traveling together. It was their first time in New York City. We had a memorable limo ride from the airport to the Algonquin Hotel. Our driver was a boxer who had sparred with Mike Tyson, swore his father had illegally entered the US in the wheel well of an airplane…twice, and asked the stranger with whom we shared a ride whether she liked threesomes. There were a couple of moments that I questioned my judgement during that ride, but ultimately it was one of the highlights of the trip.

Another highlight came a couple of days later at dinner. I don’t remember exactly where I heard or read about Prune. It seems like some publication had listed it as “the place to be seen” a few months before our trip. Nonetheless, I became aware that a reservation was very hard to get.

The boys and I decided to make ours in person. We walked miles and miles down through Greenwich Village to Battery Park, up and over to Little Italy and Chinatown experiencing the city, then on to 1st Street and 1st Avenue to secure a seat for dinner. Ben was tired. He hit the subway headed for the hotel to take a nap.

James & I continued exploring the city. We arrived at Prune on time. They agreed to seat us at a table by the large front windows where we could enjoy the night air even though Ben wasn’t there yet. The menu at the time included sardines & crackers and overcooked southern vegetables.

While we were perusing it and discussing our options, the landline phone rang (remember those?). Someone behind the bar said, “Cheri?”. I looked back and raised my hand. “You have a phone call.” This was unexpected! I made my way to the bar.

On the phone was Ben. He had gotten off the subway, turned the wrong way, and walked away from the hotel hours earlier. He had finally arrived at our room and realized it was almost time to meet us. There was no way he’d make it. He wanted to know if we could bring him something to eat later. I agreed feeling bad that he was missing dinner with us and amused at his lack of navigational ability. He and his brother are exact opposites in this area.

James & I focused on choosing our food and absorbing the atmosphere. Prune is small. It brings an odd tension between high end and intimate cushioned by a sense of humor and ease. It thinks too much of itself to be a hole-in-the-wall, but not so much that it won’t serve sardines & crackers or fetch a customer to the phone as if all customers get phone calls. It’s the sort of place I love.

Looking at the current menus, the dish descriptions read a bit fancier. I don’t know if the food itself has changed; it has always been simple and upscale (another dichotomy that’s not often done this well). The overcooked southern vegetables I chose from the menu all those years ago may have sounded like the description of typical soul food, but lacked a good 20 minutes of cooking to reach the texture I grew up with in the South.

Over time, I’m sure the restaurant has evolved as all businesses do. Owner and chef Gabrielle Hamilton has written a book, won at least 3 James Beard Awards including Outstanding Chef this year, and is writing a second book all while writing a weekly column for the New York Times magazine and running her restaurant. As her experience has grown, I’m sure it has been reflected in the restaurant. That’s what keeps a small business vibrant.

And vibrant Prune still seems to be. When you visit, expect to sit close to your neighbors. When James and I were dining, the table arrangement was so snug our waiter stepped out the front window onto the sidewalk and then back in to serve the table next to us. There simply wasn’t room to walk between them. That step out the window wasn’t awkward. It seemed perfectly natural and added to the charm of the whole experience.

Some people just draw you in. Some places do the same. These are the people and spaces in which you just may find inspiration. Prune could be one of those places. When you travel to NYC, make sure you get your share of Prune!

prunerestaurant.com

https://www.jamesbeard.org/blog/the-2018-james-beard-award-winners

https://www.nytimes.com/2017/09/19/dining/prune-review.html

http://www.algonquinhotel.com/

http://www.cooking2thrive.com/blog/?s=restaurant

Disclosure of Material Connection: I have not received any compensation for writing this post. I have no material connection to the brands, products, or services that I have mentioned. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”

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/