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Blog #10

 

Travelling during the School Holidays

 

Traveling with typical children can be a challenge but traveling with kids with PWS brings another level of organization and worry. From meal planning to ensuring meds like growth hormone remain cold throughout your trip, traveling PWS style is no easy feat! Here are some ways to make the trip a little easier:

  • Contact your pharmacy or pharmaceutical company to get a cold pack designed specifically for GH injections. These packs keep the med cold for 24 hours. If your flight or travel is expected to be very long you can ask the airlines ahead of time to refrigerate your med pouch during the flight. Most airlines will allow this. If traveling by car bring a cooler designed for long term use.

  • Get all of the info regarding meals ahead of time. If your travels bring you to a PWS conference then this part is relatively easy because any conference with a children’s program will have this done for you ahead of time. If not get menus off the internet to be sure they are up to date.

  • Plan snacks, preferably non-perishable ones and have them already portioned out.

  • Allow your child to be a part of the trip planning. Have something they would like to do at the end of each day to make the not so fun stuff more tolerable for them.

  • Use social stories to help prepare for unexpected changes. “Sometimes flights get delayed and we will have to sleep somewhere else/ eat a different meal than we planned for/not see grandma for another day and this is ok, this is not something we can control”. A story along those lines can really help your child prepare to be flexible but the stories need to be read ahead of time and not in the moment.

  • Remember to keep your affect and emotions under control. If you are upset, your child will be that much more upset. Stay calm and remind yourself that this is different and everything cannot be perfect or exactly as you planned.

  • If your child is going through a challenging time or if the trip will have few chances for leisure such as a funeral or other family event that will be stressful, find a way to leave your child home. It is ok. The best parenting decisions are those that put your child’s needs first and ignore what others may think. Family may not understand your choices but your priority is what is best for your child.

  • Contact the airlines well in advance and let them know you are flying with a person with special needs. Most airlines will have a number of ways to help you before and during your flight.

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Blog submitted: February 7, 2019

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Blog #9

 

"Living Healthy with PWS" cookbook: spot-on with Mediterranean diet trend

 

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When we published our specialized cookbook for the Prader-Willi syndrome community, little did the editorial team know that Latham was on the cusp of a diet trend. “Living Healthy with PWS: Cookbook and Nutrition Tips” is based on the Mediterranean diet, which US News and World Report declared “is the way to eat in 2019.”

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“The Mediterranean diet got the top ranking in U.S. News’ list,” according to a CBS News article published this month. “The heart-healthy diet is rich in fruits, vegetables, fish and whole grains, along with healthy fats like olive oil, nuts and avocados. Research has shown the Mediterranean diet reduces the risk of heart disease and may have numerous other health benefits, including reduction of LDL, or “bad,” cholesterol, as well as a decreased risk of Alzheimer’s disease, Parkinson’s disease, and cancer.”

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Latham’s cookbook includes healthy, nutritious meals based on the Mediterranean diet, as well as tips for success for the PWS community. We implemented this diet two years ago, correlating many of the behaviors and health issues associated with PWS with the reported benefits of the Mediterranean style diet:

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  • Many individuals with PWS struggle to maintain focus in the classroom; a Mediterranean diet rich in Omega 3s and healthy fats can protect cognitive health. Mediterranean style dining is a great way to preserve memory, sharpening the mind.

  • Individuals with PWS who struggle with weight gain often struggle with Diabetes; Omega 3 rich foods and natural foods contain fewer sugars and artificial ingredients. Since the menu implementation, we have noticed a reduction in insulin medication for some of our residents.

  • A common behavior issue for individuals with PWS is skin picking; a Mediterranean style diet helps to improve skin health due to the vitamin E rich menu.

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These benefits barely scratch the surface of the positive outcomes at Latham since implementing our menu. We have increased many of our residents’ calorie count and have observed significant weight loss – healthily, with meals and snacks our students and adult residents enjoy.

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Positive outcomes extend well beyond our programs. As of this month, Latham Centers has distributed more than 500 copies of the LivingHealthy with PWS Cookbook. We are elated with the response from around the world as we communicate with families who are benefitting from the change in diet. Parents of a prospective Latham School student who has PWS came to campus for a tour recently and brought home the “Living Healthy with PWS” guide. They tried some of the recipes in the cookbook and said that their son “loved the baked BBQ chicken, couscous, and cauliflower potatoes. We truly feel that [he] is going to flourish at Latham.”

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We’ll share answers to some of our frequently asked menu questions in future blog posts. To learn more about Latham Centers’ Mediterranean based diet, please contact cookbook co-editor Katrina Fryklund at kfryklund@lathamcenters.org.

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Blog submitted: January 31, 2019

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Blog #8

 

General Tips: Muscle Tone, Swallowing & Medication Sensitivity

 

1. Individuals with PWS have low muscle tone. Daily exercise is essential for maintaining the muscle tone that they have, improving stamina, and working toward—or staying at—their goal weight. Exercise games can help something strenuous seem fun! During "Independent Exercise Time," we offer an "option a" and  "option b" because it enables our residents to opt-in to their preferred activity. During "Group Exercise Time" we always have a "plan b," in case there is opposition to "plan a."

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2. Swallowing issues are common for someone with PWS, putting the child or adult at higher risk of choking. To lessen the risk of choking, encourage small bites with sips of liquid after each bite. One of our students even started to use chopsticks because it encouraged smaller bites, while simultaneously working on fine motor skills. 

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3. People with PWS are sensitive to medications. This is especially true for anesthesia. Be sure that your child’s surgeon or ER staff are knowledgeable about PWS before any procedure takes place. At Latham Centers we order an NPO, which means "nothing by mouth." We bring food to the student consistent with our menu plan and his or her calorie-count, and request that hospital staff only serve water as a beverage. 

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Blog submitted: January 24, 2019

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Blog #7

 

A TIP from a Latham Resident: Reacting to Change & Expectations for Cleanliness

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I thought I would make this entry a focus on how daily struggles effect the life of an individual with PWS. What I mean by daily struggles are events that may occur day to day that affect one’s mood and feelings. This becomes more difficult when you have PWS.

 

First of all, none of us react well to change. Recently I found out that my calories were being reduced to 1800 for health reasons. I was frustrated by that fact. I was upset but I didn’t let it bother me as much because I will lose the weight and get to the bottom of my problem. I’m thinking about other things rather than dwelling on the calorie restriction, which is keeping me in good spirits.

 

Another struggle that many people with PWS have, like myself, is cleanliness. First of all, if our room isn’t tidy it’s because we forget to take the time to clean it. When we have a lot on our mind whether it’s day to day activity or something that recently happened, our rooms can pile up. Ways that can help us clean it to a more presentable manner is for staff/[parents/guardians] to offer an extra hand with cleaning the room up. Another helpful solution is having furniture and/or storage totes to be able to organize our room more easily. Many individuals are gamers which means that they’ll have many games that may be on our floor or anywhere we can find to keep them stored. The last helpful idea is constant polite reminders to make sure we do take the time to properly clean our room.

 

My room has always been occasionally messy.  I’ll have papers like unwanted mail or informational pamphlets that need to be thrown out. Also my laundry can occasionally fill up my floor which tends to happen when I forget to put my laundry away.  I’ve recently got a nice shelving unit where I’m able to store my gaming systems and have some of my games on the bottom shelf. I also got a bigger computer desk for my laptop.  I’ve been able to manage the cleanliness of my room with the extra storage. Just another way of living and thriving with PWS!

 

By: Derek M.


Blog submitted: January 17, 2019

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Blog #6

Back to School:  Lunch Box Snack Ideas

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Snack time is an important break in our kid’s day. With kids on fewer calories than their typical peers, it is important to use each calorie wisely. Most snacks should fall into the 100-300 calorie range.

 

  •  One cup of high fiber cereal. Be sure to couple this with at least 6 ounces of fluid to avoid constipation.

  •  One ounce of almonds (about 25).

  •  12-15 grapes (freeze grapes for sweeter taste and more appealing texture for tactile sensitive kids).

  •  Berries mixed with one serving of yogurt.

  •  Two ounce serving of tuna, chicken or salmon. Extra protein is a great way to ward off the afternoon fatigue so frequently seen in our kids.

  •  12 mini pretzels with a tablespoon of almond butter.

  •  10 multi grain crackers with a tablespoon of light ricotta cheese.

  •  Three cups of air popped popcorn (you can make this more interesting with very few added calories by adding unsweetened cocoa powder).

  •  Two small oranges and a small handful of walnuts.

  •  Vita top chocolate muffin tops. These are a huge hit with the kids as they have a great chocolate taste. They also have the added benefit of 9 grams of fiber.

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Our LivingHealthy with PWS: Cookbook and Nutrition Tips contains other great snack ideas! To learn more about the cookbook please contact Katrina at kfryklund@lathamcenters.org.

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Blog submitted: January 10, 2019

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Blog #5

Back to School: Attention Span

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People with PWS can have difficulty paying attention and/ or maintaining focus for more than a few minutes. Here are some ways to improve your child’s attention span.

 

  • Eliminate distractions. It is often difficult for our kids to ignore distractions.  When practicing focus techniques be sure to keep external distractions to a minimum.

  • Make eye contact.  When you are asking them to do something have them make eye contact and keep the instruction simple. Slowly add steps. Paying attention is an essential skill in school and later in life. It will be difficult to teach this if it is not started early.

  • Use what they like. Our kids can often focus for long periods of time when it is something that they enjoy. Use that. Focus is something that needs to be practiced every day. Make “focus time” a daily activity.

  • Start small. Be sure that activities are timed and not open ended. Schedule activities for short amounts of time and slowly increase the time allotted.

  • Practice meditation. Mindfulness and meditation are excellent tools for improving attention span. People with PWS are surprisingly very good at these activities and they have many benefits including increasing focus.

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Blog submitted: January 3, 2019

 

Blog #4

Hypothermia

Hypothermia is a serious medical emergency that occurs when your body cannot produce heat as quickly as it loses heat. Your nervous system and all internal organs are affected when hypothermia sets in. Hypothermia in PWS can set in sooner and be more difficult to diagnose and because of this it is imperative that winter time precautions are in place. The following are the symptoms of hypothermia in the typical population as well as in the person with PWS:

 

•shivering
•lack of coordination
•stumbling
•confusion
•drowsiness and or low energy
•slow breathing or shallow breathing
•very weak pulse
•body temperature below 95 degrees

 

In the person with PWS, lack of coordination, weak pulse, shallow breathing and low energy may be baseline, so it is important to tell any medical professional what the person’s typical presentation looks like. It may also be difficult for a person with PWS to accurately describe the pain they are feeling.

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Here are some precautions that you may want to take:

•Keep an emergency box in your car including blankets and hand and feet warmers. Many people experience hypothermia and frost bite when their car breaks down in frigid temperatures.

•If your child runs away often, consider a GPS location bracelet or anklet so they can be found easily. This device has saved lives.

•Plan ahead for storms and inclement weather so you are able to stay indoors. If you need to leave home, consider having someone come to your home to watch your child instead of having them leave the house. It only takes a few minutes of exposure to cause serious damage.

If you suspect that your child may be suffering from hypothermia call for emergency medical help immediately.

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Blog submitted: December 27, 2018

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Blog #3

An Uplifting Video: "And they said my child would never...

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Students from Latham School and their families featured in a newly published video, “And they said my child would never”, would like the PWS community near and far to hear their stories of hope. The three-minute video, produced by Latham Centers in collaboration with Shoreline Media Productions, highlights the experiences of families of children diagnosed with Prader-Willi syndrome (PWS). 

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When you first receive the diagnosis of Prader-Willi syndrome, you may be told that there are things your child will never do,” begins Patrice Carroll, LCSW, Director of PWS Services at Latham. Ms. Carroll works with children and adults with PWS, and she is internationally known for her Prader-Willi expertise. Ms. Carroll tells parents, “Don’t accept the limits that other people place on your child.”

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Latham students featured on camera include Annika, whose mother said she never thought her daughter would be in such a place of calm and confidence; Christopher, whose mother is amazed by his weight loss and said he is happy, thriving, and enjoying life; and Patrick, who works at the Brewster Ladies’ Library and proudly talks of his progress toward his MCAS portfolio and high school diploma. Family members reflect on the remarkable accomplishments their children have made at Latham, a therapeutic residential school located on Main Street in Brewster.

 

One mother shares, “When we first got the Prader-Willi diagnosis, it was pretty scary. The person who told us about the disease gave us some very horrifying news about how he was going to be very cognitively impaired and wasn’t going to be able to function very well.” The video features moments in the classroom, on campus, and in the community in which her son is happy, achieving, and enjoying time with his peers.

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Ms. Carroll’s message to PWS families is uplifting: “Your child will succeed. Your child with thrive, and love, and they will make you happy and proud. They will defy all expectations, and they will show you that perseverance and patience always pays off.”   

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And they said my child would never” is available online at https://youtu.be/W1EpFG10egc

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Blog submitted: December 20, 2018

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Blog #2

A Resident's Perspective on Preparing for the Holidays

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The holidays are always a big topic of conversation when it comes to individuals with PWS.  There’s the time spent with family, but then of course comes the thought of food!! It’s important for families to understand the necessary steps to ensure individuals have a safe and enjoyable holiday.  When I was younger I always struggled during the holidays. But, today I’d like to share with you my experience during the holiday season.

 

Upon entering Latham Centers about 3 1/2 years ago, I began a journey that would change my life forever.  Being part of the adult program here at Latham has broadened my knowledge of how to handle temptations during the holiday season.  The Adult Residential PWS program at Latham follows a 5-week rotation menu ranging in individual daily calories from 1000-2000.  Being on the menu has given me a better idea as to what types of food are easier on my digestive health and the appropriate size that should be eaten.  Portions were always my challenge, especially during the holidays.

 

I go home routinely for the Thanksgiving, Christmas and Easter seasons.  My cabinets and refrigerator get locked at home when my parents aren’t around, whether they’re upstairs or out running errands.  During the main meals the food is set out Buffet style, and I’m able to have the opportunity to serve myself.  The way I handle these big celebrations is choosing what I won’t be guilty of not having later.  You may be thinking what about dessert?

 

Well, I choose either what I like the best about the choices given or I have a little bit of my top 2-3 choices.  Occasionally my family will give candy and or holiday themed treats which are planned to eat evenly throughout the time I’m home.  I always enjoy the holidays but have a safe and satisfying experience while doing so!

 

By Derek M.

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Blog Submitted: December 12, 2018

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Blog #1

Welcome to Latham Centers’ weekly TIPS blog posts

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Latham Centers wants to thank Dr. Prakasam and the Center for Excellence in Diabetes and Endocrinology for partnering with Latham in order to better inform our PWS community.  

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Each week we will be publishing a new TIP of the week in which we focus on:

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-Health and Wellness
-Nutrition
-Timely/Seasonal approach to care
-Travel Tips
-Holiday Preparations
-Testimonials from our residents
-General TIPS
-Family and Caregiver Support

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TIP #1: Holiday Prep

While the holidays can be difficult for someone with PWS because of the abundance of food, change in routines, and general excitement, it’s important for caregivers to remember to have fun, remember how fortunate you are, and manage expectations. Here are Patrice Carroll’s top-ten suggestions for preparing for the holidays: 

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1. Remember how fortunate you are. This simple mental shift can alter the entire experience.  

2. Choose your landing spots carefully. If the people aren’t right, the location is wrong, or there are too many unknowns, you can opt out of those events.

3. Maintain regular routines as much as possible. This consistency is relied upon by your child to create his or her own internal sense of security.

4. Plan ahead. The more we can do to alleviate the unknown the better. Create a specific game plan you will follow, including arrival/departure times, specific food plans, and list of clear expectations.

5. If everyone is watching then no one is watching. Take turns providing individual support and oversight so that you also have time to relax and enjoy yourself.

6. Be realistic. Even if you are scheduled to be somewhere and you realize that your child isn’t in the best space for handling this new situation, you can opt out. let others’ expectations determine your actions.

7. Have an “escape plan.” Having a plan will allow you to react seamlessly if things arise during the event. For example, take two cars when you go out so that just one person must leave with your child rather than the entire family.

8. Create special moments for everyone. Create special family traditions that support and nurture all family members. Although you might have to do things differently, the holiday routines you create can be even more satisfying. 

9. Take care of yourself. Even though this is easier said than done, it must be a priority. Find ways to care for yourself and reduce your own internal stress.

10. Laugh. The person in your life with PWS is very sensitive to any stress, yours included! Attempting to stay “light” and “free” in the chaos can be just enough to change that message.

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To see full descriptions of the Top Ten Holiday Tips, please click here to see our Winter LivingHealthy with PWS Newsletter.

 

Blog submitted: December 6, 2018

 

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