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Running Track with Exercise Induced Anaphylaxis: One Doctor Turns a Passionate Goal into a Reality

by DeeDee Riley

Screenshot_2015-10-02-13-30-12 (2)Kayla was in first grade when she first started running track. She was seven and loved to run. Her little legs moved so fast, and she was in the youngest age group. Her cheeks would flush and become spotty after each time she ran. There were times she complained of stomach cramps. Anyone who runs knows that a great run usually consists of stomach cramps and vomiting when you are getting conditioned. I thought this was what was happening – her body was conditioning and she was having physical symptoms.

In between her first and second grade years, Kayla began having struggles with her medical issues. She put on weight from the medications and we had a few challenges. When it came time to run track, I assumed her nausea, flushed cheeks, and weakness were due to lack of conditioning. I thought she just needed to push through and eventually her body would follow suit.  I had no idea that these symptoms she was experiencing were life threatening and a warning sign that anaphylaxis was fast approaching.

During one of Kayla’s visits with Dr. Randhawa, her symptoms were brought up. I thought maybe he would be able to help us condition her in a way that was more comfortable, given all of her other medical conditions. What he said shocked me, “I think she may have exercise induced anaphylaxis, and we need to test her.”

I can remember thinking, “Anaphylaxis caused by exercise. How is that possible?”

Dr. Randhawa challenged her system with an exercise test. Only 2 minutes into the test, her heart rate raised and her blood pressure dropped and separated. The test was immediately stopped. What Dr. Randhawa had suspected was quickly demonstrated during the exercise test – Kayla has E.I.A. (Exercise Induced Anaphylaxis). She was told she could not run. Kayla was devastated.

Dr. Randhawa is unique in the manner with which he handles his patients. He recognized Kayla’s devastation and put a plan together to get her back on the track. We experimented with two different medications – midodrin and cortef. Kayla was also told she no longer could eat wheat or celery – as both of these foods enhance E.I.A.  With time, everything became balanced enough for her to begin running again.Screenshot_2015-10-02-13-04-12 (2)

Kayla wore a heart rate monitor while she ran, I had a blood pressure cuff with me at all times, and her EpiPens were always within a few feet of her. The coaches and parents on her school track team were incredible. It was this village of people who allowed her to run. They were taught about her symptoms and trained on what to do if they arose. Kayla was taught to constantly check her heart rate monitor and maintain a certain reading.

As her mom, it is terrifying placing my child in a situation where anaphylaxis can occur. Knowing that running stimulates an anaphylactic reaction, and I am allowing the situation is challenging. Dr. Randhawa provided numerous resources to help us learn and understand this condition. Yes, it is life-threatening.  However, when E.I.A. is treated correctly, monitored safely, and challenged in a controlled setting prior to team runs, it is a condition that can be managed. Though extremely rare in children, and lacking in protocol for them, Dr. Randhawa knew what to do and how to keep her running. Instead of crushing her spirit and keeping her off of the track, Dr. Randhawa found a way for Kayla to continue doing what she enjoyed.

Kayla is now twelve. What felt like a long journey, began six years ago, half of her lifetime. E.I.A is a scary, life-threatening diagnosis. However, with the right physician and plan in place, exercise does not have to be stopped, just modified with safety precautions. We are so thankful that Kayla can continue doing what she loves!

 

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Living with Cystic Fibrosis and 3 Active Children

by Janice Perkins

Janice and familyI am a 37 year old female with Cystic Fibrosis. I have 2 sons (conceived naturally) and a stepdaughter that we raise full time. I am a patient of Dr. Randhawa and I want to share my success since having him as my doctor.

I have seen hundreds of doctors in my lifetime and not one has ever made such an impact as Dr. Randhawa. I was very ill under the care of another CF doctor and was hospitalized. Luckily, my doctor was on vacation and that’s when I met Dr. Randhawa. The moment I met him, I knew he had to be my doctor. He drew out pictures of lungs, listed what factors were affecting my health, set realistic goals for me, and taught me exercises and breathing techniques to clear my lungs of mucus. These are things no other doctor had ever done.

With Dr. Randhawa’s five board certifications, he is able to treat multiple aspects of Cystic Fibrosis. He has treated my immune system with certain medications that only his knowledge could make possible. He goes out of his way for his patients, making sure they have what they need to be well. He knows that one size does not fit all. Dr. Randhawa sees the potential in his patients and expects them to put forth the effort to maintain their health.

Normally visits with previous doctors consisted of looking at lung function numbers and weight, making a guess on what might work for me and then sending me on my way hoping I would still be alive to see them the next visit. One doctor advised me not to have children because I could not be the mother I wanted to be with Cystic Fibrosis and that I would not be able to see my children grow up. Now dealing with CF and having 3 very busy children is definitely a challenge. But with Dr. Randhawa’s passion, knowledge, honesty, and motivation, I am able to be less ill than most CF patients and focus my attention on raising my family.

I have included some helpful hints that have made a difference for myself and raising a family.

Staying Active! I can’t stress enough what exercise does for your lungs and body. I know exercise is the last thing a person with CF wants to do when they do not feel well. A slow walk or some stretching can make a huge difference. Having a family to take care of forces me to get out of bed and get moving.

Eating Well. Most people with CF are told to consume many more calories per day than a person without CF. I try to eat as healthy as possible, consuming smoothies with spinach, berries, coconut water, & hemp oil. I try to cook healthy meals daily and always have a healthy snack on me.

Positive Thinking. The power of positive thinking can have a dynamic effect on your health. I have always maintained a positive outlook while remaining realistic. I do not think about “what if”. I am focused on my future with my family, CF is irrelevant to my thinking. I do not let CF define me. I keep a notebook of my future goals and refer to it often.

Probiotics. These make a huge difference for me. Since we are frequently on antibiotics, it makes a difference to take a probiotic.

Today the life expectancy of a person with CF is 41 years of age (quoted from the Cystic Fibrosis Foundation website). I know that I will surpass that age and that I have many, many more years ahead of me under Dr. Randhawa’s care. Please trust there are people that understand Cystic Fibrosis and will risk anything to make a difference. TPIRC will do great things for the Cystic Fibrosis community and Dr. Randhawa is the hope that we have been waiting for.

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