Trial and Error

Asthma requires a great deal of patience. It is not an exact science.

The learning curve is steep and parents have to learn to research on their own in order to educate themselves on how to best handle their child’s illness. Working with medical professionals is crucial but parents must also learn to advocate for their children as they battle a chronic illness that has many variables.

I was diagnosed with asthma a few years before my son. The only good thing about having asthma myself was that I was ahead of the game, knowledge-wise. I knew what we were dealing with, I knew how it felt when he couldn’t catch a good breath, and I knew how important it was for him to take his meds every day. I always had an emergency inhaler in my bag for myself, so I always had it for him, too.

However, his asthma and my asthma were not the same. I had a lot left to learn. After allergy testing, we discovered at the age of 12 that he had food allergies. Suddenly, we were thrust into the world of wheat-free, tree nut-free, gluten-free…we went cold turkey on all of his allergens (wheat, tree nuts, beef, and lettuce), as I was terrified that food was making him sicker. We even tried dairy free, since dairy causes inflammation. It took hours at the grocery store just to find food he could eat. I was having to cook everything, since we were very limited on restaurants and prepared foods that were both gluten-free and tree nut-free.

We did what they told us to do. We even ate super disgusting gluten-free, dairy-free pizza. Only once. We tried soy milk and rice milk, and soy cheese, which is truly the most horrible concoction. We spent an obscene amount of money, because these specialty foods cost an arm and a leg, which is honestly adding insult to injury. Not only are you sick, but you have to destroy your budget, too! But when they tell you to do this, you do it, because it’s your kid, and even though he had never had an obvious reaction to any of these foods in 12 years, you want your kid to be well and you will do whatever it takes.

We also did allergy shots. He got a rash soon after, and the doctor was adamant that it wasn’t the shots. It didn’t go away, and on my own, I took him off the shots and the rash went away. I found a new doctor. I quit blindly following advice.

Around this time, I went to an allergist for my asthma. He enlightened me on allergy testing and how there are different methods (I had the intra-dermal kind after the skin test didn’t reveal anything. My son only had the skin test.) He mentioned that it was rare for a 12 year old to have food allergies, and that sometimes environmental allergies can present as food allergies, i.e. tree allergy = tree nut allergy, grass allergy = wheat allergy. I felt so defeated and so furious. All of that time, energy, and money I spent on his diet and the testing, when it may have been for nothing. He suggested I have my son tested again. Since we were still paying for the old test, as well as my current test, I said no. It cost me $800 out-of-pocket to be tested. And we have “good insurance.” He would have to wait.

I felt like an idiot, or worse, like I’d been had. I also felt very confused. I have a Master’s degree but couldn’t weed through all of the conflicting information. I had read books upon books, articles upon articles, joined Facebook groups…but because asthma and allergies are so inexact, I couldn’t say for sure that my previous doctor had done anything wrong, but I certainly suspect that they weren’t great.

Instead of racking up more medical bills, I found a new doctor who believed in taking traditional medicines along with alternative medicines (Epsom salt baths, supplements, Probiotics.) I decided to change our diet to more healthy, whole foods, less processed, more organic, less GMO, and more fruits and veggies. I cooked more and ate out less. We do still cut down on gluten and dairy during football season when my son’s allergies are at their worst, but otherwise, he eats a mostly (he is a teenager) healthy diet without going to the extreme.

Live and learn. Try and try again. If it ain’t broke, don’t fix it. So many trite expressions come to mind in regards to our roller coaster ride with asthma. I carry the epi-pen we got during allergy shots because I am still paranoid that he will have some reaction someday. It’s probably expired but it gives me an irrational sense of security. I also carry Benadryl in case he has a reaction. In the back of my mind, I still worry about those tests from 2 years ago. For now, we are doing our best and what makes sense to us.

This is just our experience. Food allergies are real and horribly dangerous and life-threatening to many children. We are fortunate that we have not had scary reactions to foods. My heart goes out to families that have to deal with real food allergies. But I’ve wondered how many people have been diagnosed with food allergies but have never had reactions. I wonder how other families handled this situation, and hopefully, they did better than we did.

My kid says sometimes, “remember when Mom made us eat all that weird food and we had that nasty pizza?” Like it was a “kooky phase” Mom went through, like when she was into knitting, or when she wore ugly Christmas sweaters back in the day. Ugh, parenting a kid battling asthma is never boring and often thankless but with patience, perseverance, education, and advocacy, we will get through it.

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Athletes With Asthma: A Team Effort

When you have an athlete with asthma, you know it takes a team of people to help you fight and beat it. Obviously, you need a good team of medical professionals who will listen to your unique experience with asthma and advise you based on your personal triggers and symptoms. While asthma symptoms are shared by all sufferers, each patient experiences their own special recipe of triggers, symptoms, and treatments. Asthma medications can not simply be prescribed and left alone; they have to be tweaked, doses increased and decreased, new medications added at certain times of flare-up. Vitamins and supplements from that health section of the grocery store become a mainstay in different combinations. You may even find yourself in the Herb Shop buying all sorts of interesting items you heretofore had never known were real medicines to anyone but hippies. When you or your child has a chronic illness, you add anyone and anything that can contribute to your team.

Without the nurses, doctors, respiratory therapists who do the lung function tests, the kind office staff who treats you gently when you’re sick, and the unseen researchers who have made our lives better, we would be up a creek. If you do not have this kind of team, you must find one. Immediately. Not all doctors’ offices are a positive experience; we’ve been through some bad and some good and I’m here to say that I don’t know what I would’ve done if I had not found a good one. It has been a real journey. If you need help finding one, let me know in the comments and I am happy to help you.

Of course, as with any of life’s struggles, a good team of family and friends to support your athlete and you is a must-have. Your athlete needs interaction with other athletes and peers who have asthma who know what it’s like to feel like you’re breathing through a straw. He or she needs an understanding family who has their back at all times. As a parent, our job is often to build them up when it gets difficult. Many people look at an asthmatic athlete as weak or an inferior athlete because they have to sit out from time to time. I remind my athlete that he is stronger and tougher than most people realize because he has to play football in the summer heat in Georgia like everyone else, while not breathing at full capacity. If he wanted to quit, I would support him. However, since he wants to play more than anything, it’s my job to support him and help him and lift him up.

The other team essential to your athlete’s success includes the coaches and team managers. Unfortunately, I learned this fact the hard way. Asthma is a squirrelly little devil; it is unpredictable, which can lead to passivity, which can lead to serious problems. Sometimes you have to wait and see and hope for the best. Sometimes things go well. Sometimes they don’t. I made the decision to wait and see how he did with middle school football. Of course, I filled out the paperwork and disclosed his asthma condition. I regretfully chose to downplay it and not talk to the coaches before the start of the season to help his chances of playing. Knowing his triggers were grass, summer heat and humidity, and poor air quality, my mama 6th sense told me to check on him one awful summer afternoon, and sure enough, he was sitting out and having the worst attack of his 13 years. His lips were drawn, he was shaking, he couldn’t speak well…it was terribly frightening. The 13 year old managers were calling me as I was running up to him. The coaches were unaware yet of what was happening. (Football players don’t like to complain to coaches.) I grabbed him, got his pads off, he somehow made it to the car, and we drove to the Urgent Care. He used his emergency inhaler over and over, but it wasn’t until he finally cooled down a bit in the car that he could catch a breath. His lips relaxed. He got a shot and some steroids at Urgent Care and the wonderful doctor, an ex-football player himself, gave him a man-to-man talk about talking to his coaches and keeping them informed when he STARTED to have problems and to sit down THEN. My athlete listened. We were both scared straight and I knew then I had made a terrible mistake by not talking with the coaches ahead of time.

After that day, my husband and I met with the coaches and found the tough-as-nails head coach to be an understanding, kind man and parent. He made us feel that he cared about my athlete’s well-being as he would his own son’s. We made an action plan for cooling down my athlete inside when needed, the coach kept an inhaler in a toolbox on the bench at all times, and he had my phone number in hand if my athlete had an attack.

We all felt so much better afterwards. I became motivated to find a higher level of care and found it at Children’s Healthcare of Atlanta’s Asthma Center. Our asthma doctor, who actually is a nurse practitioner, just so happens to be a football mom and totally got us. She never said, “he shouldn’t be playing football,” which was my greatest fear. She said, “let’s get you fixed up so you can get out there and play.” Love it! There was even an  asthma magazine sitting on our table that had a very successful NFL player/asthma sufferer on the cover. It was definitely the right place for my athlete! After visiting the new doctor and tweaking our medication, he was able to play better and even start, with minimal asthma issues.

I beat myself up all the time over that decision to wait and see how football went. Parenting is hard. My husband and I joke and blame the hospital for never sending our instruction manual. Asthma is hard. Most days, you would never know my athlete even has asthma. Most days, he feels fine and even forgets to take his daily meds. He did fine at practice until that day. But then, spring arrives, or fall arrives, or it’s a code orange day, or you get a cold, and your asthma jerks you out of that lala land you’ve been living in and reminds you with a hard slap in the face, saying “I’m still here…[tongue sticking out]…and I’m never going away.”

I’m just thankful that my internal mama bear made me go out to that field that day and that he was okay in the end. I’m thankful that he has the courage and the tenacity to do what he loves despite the obstacles. I’m thankful that he and we have a team of people around us who take care of us and support us and love us. Dealing with asthma truly is a team effort, and without our team we would be sitting on the sidelines, or worse.

I would love to hear about your athlete’s experiences, and especially your decision-making (the good, the bad, and the ugly) as a parent of an athlete with asthma. I welcome all comments but if you are here to judge and not here to lift people up, then go somewhere else.

2-4-6-8, who do we appreciate?

Our team! Our team!

Gooooooooo, team!

Daily Antihistamines and Fatigue

What daily antihistamine works best for you or your athlete?

I’ve learned that everyone has a favorite or a least favorite. I’ve been advised by my doctor to switch it up if you’re on one year-round. I use Allegra during problem times (spring and fall) and have used either Claritin or Zyrtec during summer and winter. I don’t feel like Claritin does that much and Zyrtec definitely makes me more tired, but it works. Allegra seems to be the most effective and least fatigue-inducing.

Fatigue is definitely a side effect of allergies and asthma. The days before I notice having breathing issues, I get so tired — to-my-bones kind of tired. I hate being tired, especially when I’m trying to be sporty. It’s more than just end-of-the-day tired. It’s all encompassing and you just want to go to sleep. That’s usually how I know I”m about to have breathing issues. So to use a daily antihistamine that adds to the tired is not good for me.

The best bet is to be sure you and your athlete are getting to bed at a decent time. That is often easier said than done, with sports practices, games, and homework contributing to many late nights. Sometimes I schedule in some down time on the weekends, which can be challenging, but we all need to chill out and let our bodies and minds have a break. Drinking lots of water helps keep your airways clear and helps detox the body, which also will help to maintain energy levels. I am not a huge fan of drinking water, especially in cold weather, so I have started drinking a mixture of 1 part Gatorade to 3 parts water. I don’t like straight Gatorade and don’t want all of the calories, but just that little bit of flavor helps me drink more water and less caffeine during the day. Your athlete might like that mixture as well…I really think I should market it! I’m a Georgia Bulldog so I wouldn’t call it Gator Water…maybe Gator Hater Water? 🙂 Whatever you call it and whoever you root for, it’s delicious, hydrating, and healthy.

Here’s to staying hydrated this winter and fighting that medicine-related fatigue! Stay tough, athletes! Spring is not that far away…

My Love/Hate Relationship with Singulair

The good news is that my 13 year old son’s asthma has been well controlled since re-starting Singulair. The heat and humidity have changed into mostly flawless fall weather days. The air quality has improved greatly. Things are looking up on the asthma front.

But with the good, there is always bad. Singulair can cause mood problems in teens, although the doctors tell us it is rare. As if teens need any more mood problems!! So while we rejoice that the Singulair has worked, we nervously watch our son for signs and try not to be overly paranoid. Additionally, the last time we tried Singulair, he started having blood pressure issues. We never fully understood what was causing that problem. They thought it might have related to the strep infection he had at the time, as well as anxiety-induced high blood pressure. I made the decision to get rid of the Singulair in case it was the problem. His blood pressure got better. We moved on.

But since he was struggling so much this football season, our new doctor suggested trying it again. My son wanted to try it again. So we did and it has so far been a success. We have monitored his blood pressure at home, when we remember. So we watch for blood pressure problems and moodiness. But at least he can breathe and play football.

I share this not for pity…but to see if anyone I know has any experience with Singulair and their children? Good or bad? It’s so interesting how I used to hate medicine and avoid even Tylenol unless I had to have it. Since having asthma, I have changed my tune and am so grateful for these life-saving drugs and the people who make them. Unfortunately, if we want to breathe, we also have to deal with their scary side effects, not to mention their high costs. But when your kid says, “Mom, can I please take it? It helped so much last time,” you say yes. Because you just want him to be well.

Sports Illustrated’s “Greatest Female Athlete of the 20th Century” Jackie Joyner-Kersee

courtesy of: http://www.nlm.nih.gov/medlineplus/magazine/issues/fall11/articles/fall11pg9.html

Olympic triple Gold Medalist Jackie Joyner-Kersee became the world’s top woman athlete in the heptathlon and long-jump competitions, despite severe asthma.

While she was a top student-athlete at UCLA in the early 1980s, Jackie Joyner-Kersee was diagnosed with asthma. But she hid that fact from her coaches, afraid they would make her stop running.
“I was always told as a young girl that if you had asthma there was no way you could run, jump, or do the things I was doing athletically. So, I just knew it was impossible for me to have it. It took me a while to accept that I was asthmatic. It took me a while to even start taking my medication properly, to do the things that the doctor was asking me to do. I just didn’t want to believe that I was an asthmatic.
“But once I stopped living in denial, I got my asthma under control, and I realized that it is a disease that can be controlled. But there were things I had to do to get it under control.”
In 1984, Joyner-Kersee won the Olympic Silver Medal in the 7-event Heptathlon. In 1986, she was the first American woman to set a world record in a multi-event competition. In 1987, she was voted the Associated Press Athlete of the Year. In 1988, she won two Olympic Gold Medals. And in 1992, she won Olympic Gold and Bronze medals. Sports Illustrated voted Joyner-Kersee “The Greatest Female Athlete of the 20th Century.”
“The most important thing is to be able to run, jump, and get up in the morning and see my family and do different things,” she says. “And to do that, I have to take my medicines regularly. This disease can be controlled.”
Since her days as an athlete, Joyner-Kersee has accomplished much as a philanthropist and tireless advocate for children’s education and health issues (including asthma), among other areas of interest. She was also featured in the National Library of Medicine’s Breath of Life exhibition on the history of asthma.

Teddy Roosevelt, Asthma, Sports, and a Presidency

American President

A Reference Resource

courtesy of http://millercenter.org/president/roosevelt/essays/biography/2

Theodore Roosevelt was born on October 27, 1858, and grew up in New York City, the second of four children. His father, Theodore, Sr., was a well-to-do businessman and philanthropist. His mother, Martha “Mittie” Roosevelt, was a Southerner, raised on a plantation in Georgia.

“Teedie” grew up surrounded by the love of his parents and siblings. But he was always a sickly child afflicted with asthma. As a teenager, he decided that he would “make his body,” and he undertook a program of gymnastics and weight-lifting, which helped him develop a rugged physique. Thereafter, Roosevelt became a lifelong advocate of exercise and the “strenuous life.” He always found time for physical exertions including hiking, riding horses, and swimming.
As a young boy, Roosevelt was tutored at home by private teachers. He traveled widely through Europe and the Middle East with his family during the late 1860s and early 1870s, once living with a host family in Germany for five months. In 1876, he entered Harvard College, where he studied a variety of subjects, including German, natural history, zoology, forensics, and composition. He also continued his physical endeavors, taking on boxing and wrestling as new pursuits.
During college, Roosevelt fell in love with Alice Hathaway Lee, a young woman from a prominent New England banking family he met through a friend at Harvard. They were married in October 1880. Roosevelt then enrolled in Columbia Law School, but dropped out after one year to begin a career in public service. He was elected to the New York Assembly and served two terms from 1882 to 1884.
A double tragedy struck Roosevelt in 1884. On February 12th, Alice gave birth to a daughter, Alice Lee. Two days later, Roosevelt’s mother died of typhoid fever and his wife died of kidney disease within a few hours of each other—and in the same house. For the next few months, a devastated Roosevelt threw himself into political work to escape his grief. Finally, he left his daughter in the care of his sister and fled to the Dakota Badlands.
Once out West, Roosevelt soaked in the frontier lifestyle. He bought two ranches and a thousand head of cattle. He flourished in the hardships of the western frontier, riding for days, hunting grizzly bears, herding cows as a rancher, and chasing outlaws as a frontier sheriff. Roosevelt headed back East in 1886; a devastating winter the following year wiped out most of his cattle. Although he would frequent the Dakota Badlands in subsequent years to hunt, he was ready leave the West and return to his former life.
One of the reasons he did so was because of a rediscovered love with his childhood sweetheart, Edith Kermit Carow. The two were married in England in 1886 and moved to Oyster Bay, New York, into a house known as Sagamore Hill. In addition to raising Roosevelt’s first child, Alice, he and Edith had five children: Theodore, Kermit, Ethel, Archibald, and Quentin.
Renewed Political Spirit
After returning to New York, Roosevelt continued his writing career, which began with the publication of his book, The Naval War of 1812, in 1882. He wrote a number of books during this period, including The Life of Thomas Hart Benton (1887), The Life of Gouverneur Morris (1888), and The Winning of the West (four volumes, 1889-1896).
Roosevelt also resumed his political career by running unsuccessfully for mayor of New York City in 1886. In 1888, he campaigned for Republican presidential nominee Benjamin Harrison. When Harrison won the election, he appointed Roosevelt to the U.S. Civil Service Commission. Roosevelt was re-appointed to the Commission by Democratic President Grover Cleveland in 1893. As commissioner, he worked hard to enforce the civil service laws, although he regularly clashed with party regulars and politicians who wanted him to ignore the law in favor of patronage.
Roosevelt served dutifully as a commissioner until he accepted the presidency of the New York City Police Board in 1895. He demonstrated honesty in office, much to the displeasure of party bosses. He also cleaned up the corrupt Police Board and strictly enforced laws banning the sale of liquor on the Sabbath.
In 1897, the newly elected Republican President, William McKinley, appointed Roosevelt assistant secretary of the Navy. Roosevelt had long believed in the importance of the Navy and the role it played in national defense. As acting secretary of the Navy, he responded to the explosion of the U.S. battleship Maine in Havana Harbor in 1898 by putting the Navy on full alert. (See McKinley biography, Foreign Affairs section, for details.) Roosevelt instructed Commodore George Dewey to make ready for war with Spain by taking the necessary steps for bottling up the Spanish squadron in Asian waters. He also asked Dewey to prepare for the probable invasion of the Philippines.
The Rough Riders
When the Spanish-American War began, Roosevelt resigned as assistant secretary of the Navy and volunteered for service as commander the 1st U.S. Volunteer Cavalry, a unit known as the Rough Riders—an elite company comprised of Ivy League gentlemen, western cowboys, sheriffs, prospectors, police officers, and Native Americans. Once in Cuba, Roosevelt distinguished himself by leading them on a charge—on foot—up San Juan Hill (actually Kettle Hill) on the outskirts of Santiago. The contingent suffered heavy casualties.
The Rough Riders returned to the United States as war heroes. Their varied backgrounds, colorful leader, and bravery on the battlefield brought them considerable attention. Roosevelt personally reveled in his time in the military. He later wrote about his military exploits: “I would rather have led that charge and earned my colonelcy than served three terms in the United States Senate. It makes me feel as though I could now leave something to my children which will serve as an apology for my having existed.”
Governor
Roosevelt returned home a war hero and caught the eye of Republican leaders in New York who were looking for a gubernatorial candidate. He agreed to run for governor against a popular Democrat, Judge Augustus van Wyck, the candidate of Tammany Hall. Roosevelt carried the election by just a few thousand votes; his victory stemmed largely from the work of the state’s Republican Party boss, Thomas C. Platt, who threw the full support of his political machine behind the hero of San Juan Hill. Although Platt and Roosevelt had agreed to consult each other on matters of policy and patronage, the new governor was his own man. TR steadfastly refused to appoint party regulars as State Insurance Commissioner or Public Works Commissioner—the two most important patronage jobs in the state.
When Governor Roosevelt supported a bill for the taxation of the value and assets of public services (gas, water, electric, and streetcars), his actions led to an explosive break with Platt. Almost overnight the insurance companies, the construction contractors, and the privately owned public service corporations realized that all the money they were contributing to Platt’s political machine brought them little if any influence with Governor Roosevelt.
Boss Platt knew that something had to be done with the governor before he completely destroyed the Republican state machine. Consulting with Mark Hanna, the top Republican political boss in the nation, Platt conspired to “kick [Roosevelt] upstairs” to the vice presidency in 1900. (Vice President Garret Hobart had just died in office.) This would keep Roosevelt from running for a second term in New York (the governorship was a two-year term in those days). Roosevelt reluctantly agreed, persuaded that the vice presidency might lead to a shot at the White House in 1904. He also knew that the party bosses had rigged the convention, making it nearly impossible for him to avoid being nominated.
1900 Vice Presidential Campaign
The Republican convention nominated TR by acclamation. Thereafter, Roosevelt campaigned furiously for the Republican presidential candidate, William McKinley, matching his Democratic opponents, William Jennings Bryan and Adlai E. Stevenson, move for move. Roosevelt traveled more than 21,000 miles on a special campaign train, making hundreds of speeches, and more than three million people saw him in person. He spoke in 567 cities in twenty-four states. “Tis Tiddy alone that’s running,” observed Mr. Dooley (a press columnist who used an exaggerated Irish accent to make political observations) “an’ he ain’t a runnin’, he’s gallopin’.”
The Republican ticket overwhelmed the Democrats, racking up an 861,757 vote plurality, the largest Republican victory in years. McKinley won the popular vote of 7.2 million (292 Electoral College votes) to Bryan’s 6.3 million (155 Electoral College votes). McKinley won his bid for reelection over Bryan by an even larger margin than he had garnered in 1896.
In September 1901, however, an assassin’s bullet killed President McKinley (see McKinley biography, Death of the President section). This tragedy put Theodore Roosevelt (“that damned cowboy”—according to Mark Hanna, the top Republican political boss in the nation) in the White House as the nation’s twenty-sixth President. He was the youngest person ever to serve in that capacity. Neither the nation nor the presidency would ever be the same again.

courtesy of http://millercenter.org/president/roosevelt/essays/biography/2

Good Asthma Resources Are a Parent’s Best Friend

A wonderful (albeit 10 years old) resource that helped me early on…I am still learning every single day but this book was a good starting point. Asthma feels like you’re breathing through a straw. Now add playing a sport on top of that and you get some seriously tough kids! Often they are looked at as “weak” because of their medical condition, but they are the toughest kids you’ll ever meet.

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http://www.amazon.com/exec/obidos/ASIN/0743224787/harvardhealthpub