Posts Tagged With: adolescent

 
 

Encouragement for teens with POTS – and their parents

Recently, a young friend was diagnosed with POTS, and thinking about what she and her parents are coping with brought back many memories of the years when my daughter was struggling with POTS. Memories that I had pushed aside of how hard it was for her to try to just get out of bed, how frustrating for me as a mom to not be able to “make it all better,” how much she missed out on because of her illness, years of searching on the internet for information, doctors, treatments….relief to have a diagnosis but sadness that there is no cure, except perhaps time. The medications do help, and time passes.

My daughter will be 22 in May, twice her age when she got mono and as I say “never really recovered.” Yes, over the years she has gradually “outgrown” it. She is so much better today than those most difficult years. Although, it is still with her. The medications are still needed to help her maintain her schedule. She still needs to take care of herself and guard her health. A year ago, she asked when it is that a person is supposed to outgrow POTS. The research says that most patients outgrow POTS by early adulthood. She asked, “What if I’m one who is not like most and I never outgrow it?” “When is early adulthood?” she asked. “Twenty-three,” I said.

She finished 3 years of undergraduate studies on schedule, by avoiding 8:00 a.m. classes “like the plague,” and not taking over 14 hours per semester. She managed enough energy to really enjoy college life, for which I was very thankful since she had missed out on many high school activities. She was able to hold several jobs during college, including babysitting and working in the animal science department. She was even able to work in the summer for the animal science department where she had to feed cattle at 7:00 am every morning. It was a struggle for her to get up and go and be there at 7 am, but she never missed. That simply wouldn’t have been physically possible for her a few years ago. This year she started veterinary school through a wonderful program where students can start vet school a year early and finish their bachelor’s degree while also being in vet school. So fall semester brought a much more rigorous schedule than undergraduate years and much more study time, but she made it through.

When she started college and we left her alone in the dorm, I wondered if she would have to drop out because she wouldn’t be able to attend classes. When she started vet school, I wondered if she would have to drop out because she wouldn’t be able to make 8:00 a.m. classes every morning. She has been blessed with friends she made in college, including her wonderful roommate whom she’d never met until they were assigned to live together freshman year – and now they are in vet school together – and her sorority sisters. They have been there to help her.

She has been blessed with her own determination and will. However, the fatigue of POTS is so overwhelming that determination alone cannot overcome it. Studies say that often those who get POTS are type A, achievers, intelligent. That’s true of those I know who have suffered from POTS. So it makes sense to me that their academic ability is also a blessing that will help them succeed and “catch up” when they are physically able. The “brain fog” that comes with POTS is also something they must overcome, and the medications can help with it. That’s where good, understanding doctors are needed. Joanna “aged out” of pediatrics in college, so she had to find a new doctor, and finding someone who knows or will learn about POTS and medications to prescribe is challenging. She also wanted to be able to manage without the meds, so had stopped taking them. In vet school she found she needed to be able to go all day every day and still needed the meds. We found a wonderful doctor who helped her to understand it’s ok to still take the meds – “If you were a diabetic, you’d take insulin. You need to accept the help for POTS.”

So, I want to encourage young people with POTS and their parents. While it seems like you will never be able to do what you did before or to achieve your dreams, do not give up. Even though it may take a long time, you will feel better and be able to do much more than you can today. Joanna has wanted to be a veterinarian really all her life, and it seemed very unlikely she would be able to reach that goal when she couldn’t even make it to middle school! For nearly 11 years, I didn’t know if I’d ever be able to write the story of a successful outcome for her.

Moms and dads and their friends who are searching for answers for these young people struggling with POTS – YOU are such a blessing to them. Keep praying and hang in there! My heart goes out to those with POTS who have no diagnosis and whose parents don’t know where to turn. You have done a lot for them by finding a diagnosis for them.

God bless you and keep you.

Categories: adolescents, fatigue, Health, parents, teens, Uncategorized | Tags: , , , , , | Leave a comment

Welcome

This site is for those searching for answers to a debilitating fatigue that strikes young people and leaves them struggling but unable to even get out of bed. Postural Orthostatic Tachycardia Syndrome (POTS) often goes undiagnosed, and parents are left searching for answers and help for their children. Many of these young people are isolated from friends and school because of their condition, and as a result are unable to complete their education.

Physicians, including pediatricians, and school administrators alike are often unaware of POTS and so don’t recognize the symptoms. There is no cure for POTS. Yet, there is good news! There are treatments that can help the young person with POTS function, complete their education, and remain part of their family and friends’ lives. More good news is that almost always the teen with POTS will “outgrow” the syndrome by early adulthood.

Often POTS begins suddenly after an illness – often viral with a high fever. My daughter caught mononucleosis at her elementary school in 5th grade in the spring of 2003, when she was not yet 11, and that was the onset of POTS for her. For the next 5 1/2 years, we searched for answers, physicians, medications, anything that might help her. In the fall of 2008, we were referred to Dr. Daryl Lynch, Director of the Teen Clinic, at Children’s Mercy Hospital in Kansas City. At last we had found someone who immediately recognized her symptoms, was knowledgeable about POTS, and experienced in treating this syndrome. Following testing, the diagnosis was confirmed.

With effective treatment in place, she was able to cope with POTS as best as possible, and today at age 20 is beginning her junior year in college, as the symptoms of POTS gradually fade away.

Click on “About” to learn more about POTS. Posts to this site will include sharing of articles about POTS, to provide greater understanding for parents, teachers, physicians and other caregivers. We welcome posts and stories from others who have lived through or are living with POTS.

This site is dedicated to all those who are struggling with POTS today and those who are trying to support them and help find answers. And it is dedicated with gratitude to those who tried to help her along a difficult journey – a key group of friends, physicians, and educators.

A special thank you to Mayo Clinic Pediatrics for their excellent work, treatment, research and education about POTS.

Categories: Health | Tags: , , , , , , , , | Leave a comment

Blog at WordPress.com. Customized Adventure Journal Theme.

Follow

Get every new post delivered to your Inbox.