Celiac Disease and Children: Some Things to Keep in Mind

By Rachel Sircy

pic 1I’ve been thinking lately about my daughter, who is four, and about whether or not she may also have celiac disease. I’m sure that those of you out there who are celiacs wonder about passing on your gluten intolerant genes to your children. So, for those out there wondering if you should get your children tested for celiac, here are some facts from the Celiac Foundation’s website about children and celiac disease:

* Children with a first degree relative who is a celiac have a 1 in 10 chance of developing celiac disease. So, it’s not a certainty that your child will develop celiac disease if you have it, but they have a higher chance than someone who doesn’t have a close relative (parent, sibling) with celiac.

* Some children start showing signs at different times than others. The jury is still out on why this happens, but some children will begin to show signs of celiac in late infancy or toddler-hood and some don’t develop symptoms until much later in childhood, even into the late teens or early adulthood. What this means is that even if your child is older and has been consuming gluten for most of his or her life, they can still develop celiac disease.

* Children of different ages are more likely to exhibit different symptoms, but there is some overlap in the signs children manifest when they have celiac. Keep an eye on your child if they have a lot of bloating, gas, constipation or foul-smelling diarrhea, chronic fatigue, irritability and especially if they are very young and are vomiting frequently and have poor growth or failure to thrive. Some rarer or more unusual symptoms which can appear in childhood are frequent mouth sores (I still get these!) and that itchy, blistery skin rash known as dermatitis herpeteformis.

pic 2So, apparently severe celiac disease is not common among children anymore, so the symptoms listed above may not be strong enough to be alarming. However, if you know that your child has a higher risk of celiac disease, just be on the look out for those symptoms listed above. And make sure you check out the Celiac Foundation’s website, they have a wealth of information for you to draw from. Remember, children heal from celiac disease much better than adults do. It’s better to get your child tested earlier rather than later because the sooner you can get them on a gluten free diet, the sooner they can heal.

Living with a Chronic Illness

By: Tina Cameron

Not many people know that my two sons and I have a chronic illness that has no cure. It all began when my oldest was 9 years old. He was injured in his karate class (kicked accidentally in the head) by another kid. He was close to having a detached retina, had a black eye, busted blood vessels and spent 8 weeks wearing an eye patch. What we didn’t realize for several weeks was that this kick to his head turned out to be a blessing in disguise. He started having a “clicking” sound when he would move his head up and down or left and right. He thought it was a party trick. Little did we know that it was actually very serious. From his pediatrician’s office we were sent straight to Palmetto Health Richland for STAT CT Scans of his neck and spine. I began getting nervous as they kept coming to get him for more scans. At last, I heard my name being called and looked up and it was the radiologist with my son and tons of CT films in hand. She said Dr. Fred Piehl (pediatric orthopedic surgeon) is waiting for you now. I said, “it is 4:50, they are closing”. She replied, he is keeping the office open for you, you need to go now. I called my mom and my ex-husband and they both met us there.

As we all set in his office, I feared the worst. Corey was in the hallway and he spoke to us first and informed us what his condition was and that it could be life-threatening, and that Corey needed to be aware of it. He was diagnosed with Atlanto-Axial Instability of his Cervical 1 and 2 spine. He could turn, cough, sneeze or get in his head and it cause him to break his neck and with that he could break it and be fine, break it and become a quadriplegic instantly, or break it and it kill him instantly. We went home in shock. Everything changed, from how his bed was positioned, to never being able to play contact sports, diving in my parent’s pool, and his karate career was over. He was also home-bound from school for 9 months. He was 9 hours short of getting his black belt. He what is edsalso taught two classes of karate a week. We were sent to a neurosurgeon and neurologist as well geneticist. After our first visit to the neurologist, he said I think you all have this rare connective tissue disorder called Ehlers-Danlos Syndrome, Type 3. He told me to look it up and then sent us immediately for lab work on another floor in his office building. Shortly after his labs were drawn and we were waiting to leave, Corey grabbed his head and said, “I don’t feel well”. He proceeded to fall out of the chair, had a Grand-Mal Seizure and quit breathing and his heart stopped. I am a nurse and at that moment, I freaked out and was only the mommy. Thank God there were two other nurses there for lab work that revived him. We were on campus of the Children’s Hospital, so we were admitted from the emergency room for the weekend. He was also having incontinence of urine and numbness/tingling in all his extremities. Seizures also go with the Ehlers-Danlos Syndrome (EDS).

Once we had the official diagnosis from the geneticist, I became obsessed with finding everything I could about it. My friends who are physicians had not seen cases in over 20 years. It can affect your heart and affects all your connective tissue in your body, it affects your skin. The type we have, type 3 is now called hEDS (hypermobile Ehlers-Danlos Syndrome). There are now 13 different type of EDS. It is a group of inherited connective tissue disorders caused by abnormalities in the structure, production and/or processing of collagen. So, we have faulty collagen. Collagen supplements do not work for us, because it is our DNA that is screwed up. Basically, the boys and I have easy bruising, easy bleeding, incisions after surgery do not stay closed and we are extremely hypermobile and have soft, stretchy skin. We are prone to multiple dislocations daily, pain all over, bruises that come from something as simple as rolling over in bed. EDSers also have multiple medicine and food allergies and Corey and I do. This condition is hereditary, so unfortunately if my children have kids, there is a 50/50 chance their kids will have it as well. The most serious type is vEDS (vascular EDS)-this is where most people do not live past 35 and they usually die unexpectedly from an aortic dissection. My older son has the most serious case of hEDS out of the three of us and I have it moderately and my youngest just has it mildly.

When Corey was growing up, he began having dislocations from changing his shirt or raising his hand in class, to hip dislocating from walking in the school halls. He went through extensive physical therapy for 3 months and to this day must work out daily. We ended up not having the rod placed in his spine and gradually the numbness and incontinence went away. His instability in his C1 C2 spine has closed some which is wonderful. He learned how to put his shoulder or hip back in place on his own to avoid trips to the ER.

My hip has dislocated once, my shoulder 3-4 times from rolling over in bed when sleeping. I am in constant pain all over almost daily. My knees are bad and slip out at times, so I have braces to wear as needed or when I run. Bruises on my body, stay about 8 weeks where on normal people, just a few days. I even get bruises from fire ant bites.

Both boys have had complete knee reconstructions, at age 16 and age 26. We know we will be facing knee and hip replacements as we age. This condition affects our eyes, our teeth, and pretty much our whole body. Most people with hEDS also have Fibromyalgia, chronic fatigue, migraines, and more.

Knowing that you have a chronic illness with no cure is a hard pill to swallow. However, I try not to let it run my life. I deal with the pain and take Advil with me everywhere. There are days, I hurt so much all over I cannot get off the couch. Many physicians have not ever heard of EDS and many do not believe the patient and think they are hypochondriacs. Family members also doubt us (not mine), but people that I have met in online support groups. We started calling ourselves Zebras because in Med School, thewhy the zebra students are taught to that when you hear hooves, think horses, not Zebras. In medicine, the term Zebra is given to a rare disease or condition. That is how we became known as medical Zebras. Because of the complex nature of our disorder, we are followed by primary care, rheumatologist, geneticist, cardiologist, physical therapist, gastroenterologist, urologists, neurologists and many more specialists as things arise. Some of the friends I have made in my support group are already on disability at 22 and 32 years of age, so I feel blessed that as of right now, my joints have tightened up, I can deal with the pain and that thank God, we do not have the vascular type. I thank God everyday that my boys otherwise are healthy and that Corey’s doing much better and is in great physical shape.

eds scoreSo, the next time you see a contortionist on America’s Got Talent, more than likely, they have Hypermobile Ehlers-Danlos Syndrome. And, if you see someone parked in a handicap space get out and they can walk (just slowly) or is young and, in a wheelchair, —do not judge. Not all disabilities are visible. Because of so many people in the medical field not knowing or even understanding EDS, awareness needs to be widespread globally. Fortunately, May is EDS Awareness month and with numerous online support groups on social media, we are getting the awareness out on what this disorder is. What we need most is for our physicians to believe our symptoms and not dismiss us, or think we are hypochondriacs. There are genetic markers for vEDS, so I am not sure why medical professionals are not believing genetic testing.

eds meme

The Screen Door

By Shannon Boatwright 

The South. The South in the Summer.

Heavens to Betsy, the SOUTH IN THE SUMMER…!

Imagine those words literally melting off the screen here. Imagine a summer drenched in such raw heat and humidity that when you step foot outside, you literally feel like some dark witch has enveloped you in some evil spell meant to drain every ounce of water from your body, thus melting you to the core.

Welcome to the South in the summertime!

My Uncle Wayne always said, “South Carolina is the screen door to hell!”

If you’re from SC or have spent any decent amount of time in SC during the hottest days of the summer months, then you would totally relate to this statement and laugh as you shake your head in agreement.

I should be used to this heat. I grew up here in SC. I have survived many a summer here at the devil’s front door. But, I tell ya, every year I am astounded at the intense heat. Every year I find myself saying, this heat is just flat out ridiculous! How much longer until Fall?

It’s funny how us South Carolinians seem to easily forget how intensely hot the summers can get. We make it through the coldest months of winter, which mind you, are nothing compared with the cold that the northern states endure, and all we can think about is summertime. Days on the lake, days on the beach, or by the pool, the lovely warmth that envelopes your body like a picturesque postcard from the South of France. It’s something we crave during the cruelty of winter. Yet, if you live in the deep South, it’s something that once it’s here… you say to yourself, what the heck was I thinking?!

lakeI have the glorious privilege of living on Lake Murray in SC. Unless you live on one of the many beautiful beaches of SC, I have to say that days on the lake in SC are always better than days anywhere else in the deep South without water nearby. If you’re close to the lake and blessed to have the benefit of the magical weather that happens when you’re that close to a large body of water, then you know that there is this lovely misconception that it’s always cooler on the lake. Okay, maybe I shouldn’t say misconception, but it seems that just when you think it should be cooler on the lake, you’re still really right there at that screen door, like a dog panting, drooling, very impatiently waiting for the next cool breeze that might soothe your misery for one second.

The Southern heat does not discriminate. A majority of the summertime, it’s just flat out HOT, and our kind of humid heat can zap you good, stealing all of your energy, draining you to a worn out crisp. I can’t help but think of all those who have jobs that require them to work outside. I hate it for them. These are people are incredible human beings that obviously have to condition their bodies to survive this type of heat. My poor husband endures this heat daily with his job. As a UPS driver he has conditioned himself to survive working right at the screen door. And yes, those trucks have NO air conditioning. Daily he has to carry a cooler full of waters and use a hand towel to wipe all the sweat not caught by the layers of his uniform. He comes home from a 10 to 14 hour day and is literally soaked through with sweat.

Think of the soldiers that come to SC to train in this heat every day at Fort Jackson, and in full uniform at the weekly graduations from boot camp, in which thousands of family members come to town to experience the southern hot spot that is Columbia, SC. Not only do these soldiers accomplish conquering basic training, they also accomplish literally surviving training at the screen door to hell!

Bravo to all those that are able to successfully survive the South in the summertime!

heat mapThe word “oppressive” has been used so many times by our local weather men and women, that my family and I stopped counting. The words “oppressive heat” are used VERY often around these parts. And of course, SC is not the hottest place in the U.S., but as you can see by this map, we’re still in an area with a very high percentage of oppressive heat.

So as you live out the rest of our summer days, while you’re standing at the screen door, by all means do it with an ice cold drink in one hand, a fan in the other and a really good air conditioner ready to rescue you.

Run, Walk, Honor our Heroes! Lexington Medical Center Sponsors Stephen Siller Tunnel to Towers South Carolina 5K Run & Walk

6.12The seventh annual Stephen Siller Tunnel to Towers South Carolina 5K Run & Walk is set for Friday, September 20, 2019 at 7:00 p.m. in Columbia’s Vista. Along a picturesque course spanning the Gervais Street and Blossom Street bridges at sunset, the race celebrates and appreciates first responders and military service members who serve, save and sacrifice on our behalf every day. Lexington Medical Center is proud to be the presenting sponsor.

 The race is named in honor of Stephen Siller, a New York City firefighter and father of five who died on September 11, 2001. That day, Siller was off duty and on his way to play golf. When he heard what was happening at the World Trade Center, he strapped on 60 pounds of gear and ran from the Brooklyn Battery Tunnel to the World Trade Center. He gave his life to save others. The Stephen Siller Tunnel to Towers Foundation is committed to ensuring that Americans never forget 9/11 and that our children understand the sacrifices made by many on that day.

7.17The route for the Stephen Siller Tunnel to Towers South Carolina 5K Run & Walk begins near the First Responders Historic Remembrance Memorial next to the Columbia Metropolitan Convention Center on Lincoln Street. Participants will travel down Gervais Street, across the Gervais Street Bridge into Cayce, up the Blossom Street Bridge and back to Columbia’s Vista in the early evening.

The goal of Tunnel to Towers is to support first responders and military service members who have been catastrophically injured in the line of duty. Proceeds from the 5K will benefit the building of smart homes for quadruple and triple amputee veterans from the wars in Iraq and Afghanistan through the Stephen Siller Tunnel to Towers Foundation’s “Building for America’s Bravest” program.

Register for South Carolina’s Tunnel to Towers 5K Walk and Run at www.t2trunsc.org. The entry fee is $30 until August 20, with discounts for first responders, students and military members. Importantly, businesses and organizations are encouraged to build a team of participants.

7.24In previous years, participants included more than 800 Fort Jackson soldiers running in formation, South Carolina first responders, law enforcement officers, military service members from all branches of the Armed Forces, avid runners, families and teams from businesses and organizations. More than 2,000 people participated. Many more are expected this year.

There will be an opening ceremony at 6:30 p.m. and an after party with an awards ceremony, live music, food and beverages, vendor booths, and a raffle and silent auction.

For more information about the Stephen Siller Tunnel to Towers South Carolina 5K Run & Walk, visit www.t2trunsc.org.

 Follow news and information about September’s Stephen Siller Tunnel to Towers South Carolina 5K Run & Walk on social media:

Facebook: T2TSC

Twitter: @T2TSC

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For more, visit www.t2trunsc.org

Summer Fun

By Lisa Baker

Hope you are all having a great summer.  We have had quite a few activities already. At this point we have Dad on hospice care.  He continues to be aggressive at times, however, changing his medication has helped some. My last visit with him I stayed exactly 12 minutes.  He was busy trying to take the closet doors down in his room.  Of course, without any tools he wasn’t going to get that project done, but he had no time for me at all. I tried to get him to sit down and visit with me.  He sat for one minute and was back up working on the closet doors, so I left. He has lost weight and is now wearing pull ups most of the time.  Hospice helps out by providing the pull ups and his medications among other things.

pic 1_fallen limbDuring a bad storm a week or so ago, we lost electricity.  We live close to Dreher Island State Park. By that evening my husband decided we would go to a motel for the night. I’m not sure exactly when our electricity came back on, but when we got home Sunday morning it was on. It’s amazing we didn’t have a tremendous amount of limbs down in the yard.

That afternoon, I went out to take some pictures. Our yard has several areas that are rocky and uneven.  I somehow managed to fall right on the rocks. Yes, I had shorts on, so I really hurt my knees, especially the left one.  They are all scraped and scabbed over. I also sprained my right wrist and managed to hit the side of my head, breaking my glasses.pic 2_sprained wrist

I hurt so bad that I told my husband to take me to urgent care. Thank God nothing was broken. I have never hurt so bad in my life. The doctor gave me a work excuse for the whole week and I hurt enough that I followed doctor’s orders. I’m still sore even this week, but not as bad as last week. I’m slowly healing.

pic 3_Lisa and husbandOur summer has been not so much fun but full of adventure for sure. Through it all, my amazing husband continues to be my rock.  He always supports me in everything I do. 

Make memories and have a safe summer!

Lisa 

Summer Road Trip Series Part III: “Get Your Kicks on Route 66”

By Marianna Boyce 

After driving almost seventeen hours, we made our first stop on Route 66 in Amarillo at a humongous Texas-sized wheat field. We parked alongside the road running parallel to I-40 with other weary travelers. We all had the same plan…I just hoped they brought their own spray paint.

pic 2Wind was gusting to about 30 mph, so before getting out of the car at Cadillac Ranch, I put my hair in a messy bun. I was wearing the same blue and white Ralph Lauren dress and cute little white sandals from the day before. My husband Gerry, and son Cody, were also sporting the same clothes from the previous day, but no one cared. We were all having a blast.

I released the trunk to retrieve the lime green spray paint packed before leaving South Carolina. There were some old cars we wanted to leave our mark on before heading further west.

pic 1Cadillac Ranch is a roadside attraction showing the evolution of tail fins on ten, older model Cadillacs. They are artistically displayed about 200 yards off the road, all upright, in a row, with their noses half-buried in the ground. For those that haven’t heard of this quirky little dot on the map, we were not “Breakin’ the Law.” Graffiti is actually encouraged here.

Leaving our mark on this popular landmark proved difficult on such a breezy day, but it was exactly what we needed to break the monotony of driving. After exhibiting our artistic interpretations on several cars, we shared our can of paint with travelers who didn’t come prepared. This attraction is free of charge and open 24/7/365.

Since we skipped lunch, we stopped for an early supper at the Big Texan Steakhouse a few miles down the road. At this bright yellow restaurant with a gigantic, long-horned, bull statue in the parking lot, you can order a seventy-two ounce steak cooked to perfection, free of charge. That’s four and a half pounds, y’all. Oh wait! There is a stipulation. No sharing is allowed, and it must be eaten within one hour. This includes their salad, baked potato, shrimp cocktail, and roll; otherwise, your meal isn’t free. It will cost $72. I wisely chose their six ounce filet, and after our delicious meal, we “Hit the Road Jack.” It was my husband’s turn to take the wheel…

*****

We left the tall green trees behind. They were morphing into smaller bushes. The vast landscape was dramatically changing with nothing obstructing that enormous blue sky. Texas gives an interesting 360 degree perspective. In certain areas, if you concentrate on the horizon, you can see the curvature of the earth. “I Can See For Miles and Miles…” It’s simply amazing!

In this beautiful, strange land, the billowing white clouds not only seem to dip below the horizon, they also stretch far into the heavens. There are no limits to the imagery that unveils like an artistic masterpiece. I love the enormity of Texas with all of God’s glory brilliantly on display, but we kept pushing forward.

*****

pic 3We crossed into New Mexico and made it to our next destination about an hour before sunset. The timing was perfect. Cody wanted to see the Blue Hole of Santa Rosa. This mystical Blue Hole is a natural geological formation created by a network of underground lakes in the middle of nowhere. With a constant inflow of 3,000 gallons of water per minute, it’s an incredible sight to see.

pic 4The surface diameter measures eighty feet, but increases to 130 feet at the bottom, making it a bell-shaped gem. There’s a rock ledge just underneath the water, but it dramatically drops off eighty feet into a mesmerizing, brilliant, blue void.pic 5

There is no lifeguard on duty, but if you’re adventurous, feel free to take a surface dive in the crystal-clear water. Even in their hot summers, this beautiful artesian well is a constant sixty-one degrees.

pic 6Cody was able to take two quick dives. The shock of the cold water instinctively pushed him up in milliseconds. My husband and I weren’t quite as bold. I only dipped my big toe and Gerry chose to merely observe. He’s not keen on anything cold, except for his chocolate cherry ice cream, and southern sweet iced tea. A visit to this interesting oasis is also free of charge and open 24/7/365.

pic 7As we watched the beautiful New Mexico sun setting behind the mountains in the distance, we drove a few miles down the road and found a room for the night. We were all exhausted, so we looked forward to a good night’s sleep before the adventures we’d lined up the following day. We all showered, crashed, and burned. Our plan was to rise early the next morning to see something grand. If we timed this one right, we’d be there a little before sunset as well…

We had an amazing twenty-four hours driving from South Carolina to New Mexico—and all still on speaking terms. Miracle? Not really…just “Love the One You’re With,” and don’t sweat the small stuff. Hopefully, you picked out the song references easily. We sang them all.

Arizona, here we come…pic 8

Summer of 2019: Trial Run of an Empty Nest

By Janet Prince

pic 1This summer, Gary and I have had the opportunity to have a trial run for when we have an empty nest. Our youngest has attended two trips leaving us home alone for the first time in almost 22 years! We have always joked that when the nest was empty, we would start dating again, and we did!

We went out to dinner alone one of the nights. Having time to have dinner alone in a restaurant with out the girls and their friends was a rarity. But of course, what did we talk about? The girls! Our life has always revolved around them and it seemed that not having them with us put us a little off balance. In our little family we have always moved as a unit. We go most places together and even when we are home, the girls have always spent time with us on the porch talking and watching TV. On another date, we made it a double with Ashlan and her husband Joe. It was a lot of fun getting to hear everything going on with them and it let me get my “mama fix”!View of beach at Huntington Beach State Park, South Carolina, USA

Summer has always been a great time to travel and to relax. The beach and the mountains are always our go-to places. We have our favorite places to go eat and our favorite things to do in both mountainsplaces. We always do the same things, but they are things that make us happy and things that the girls always looked forward to. I guess we can be called creatures of habit. Every place holds a special place in our memories.

Summer also means some separate traveling for Gary and me. The last weekend in June each year is when I travel with many others from our state to the GFWC Annual Convention. This year we were in Austin, Texas. We had lots of laughter and catching up with members from across our great country. Although it can be tiring it allows me to come home rejuvenated. Spending time with my girlfriends on these grand adventures is something I look forward to each year. Gary also gets to travel, but his is for work.

Our trial run of an empty nest has been good for us. We have had time to talk about whatever we wanted, and we learned that yes, we will be alright when the nest is really emptied. But for now, we are glad our nest is still full!

Until next time,

Janet