There’s nothing scarier than watching your child suffer with multiple unexplained symptoms and not knowing how to help them. Often pediatric patients with dysautonomia and their parents have seen multiple specialists and received no definitive diagnosis. Unfortunately most doctors are not trained to understand why these symptoms exist and how they fit together. If this sounds like your experience as you’ve tried to find answers for your child, it’s important to know that you’re not alone. There are things you can do to find out if your child has an autonomic nervous system disorder and there are steps you can take to help them.
Here’s where you can start:
- Know the symptoms of dysautonomia.
- Utilize the Autonomic Disorders Assessment for undiagnosed or diagnosed patients
- If the symptom descriptions fit your child’s symptoms, find a provider who can diagnose them.
- Get a copy of our definitive guide on dysautonomia, The Dysautonomia Project book, and take it to your provider with the symptom assessment list
- Be prepared for the medical appointment
- Help your child learn to take age-appropriate ownership of their healthcare
- Let us help you learn about dysautonomia.
KNOW THE SYMPTOMS OF DYSAUTONOMIA
Knowing the symptoms of dysautonomia is the place to start. (These are symptoms of chronic orthostatic intolerance and not those of rare congenital pediatric dysautonomias.) The symptoms experienced by dysautonomia patients vary based on the type of autonomic dysfunction and where the dysfunction is occurring within the body. Because dysautonomia affects multiple organ systems, the presentation of symptoms are heterogenous, widely varying between individuals depending on the type of dysautonomia. For example, one patient with POTS (postural orthostatic tachycardia syndrome), the most common form of dysautonomia, may have the chief complaint of abdominal pain while the next POTS patient complains most about migraine headaches. The organ systems most commonly affected in POTS are neurological, pulmonary, cardiovascular, urinary, gastrointestinal, secretomotor and pupillomotor. One interesting common sign of autonomic dysfunction is the difficulty maintaining upright posture, also known as orthostatic intolerance.
The top seven signs and symptoms of dysautonomia include:
- Difficulty standing still
- Fatigue
- Lightheadedness
- Nausea and other GI symptoms
- Brain fog or mental clouding
- Palpitations or chest discomfort
- Shortness of breath or difficulty breathing
This is not an exhaustive list of dysautonomia symptoms. However, they are some of the most common. It’s possible to simplify this list down to these three key indicators:
- Dizziness or lightheadedness upon standing. Your child does not have to faint to have dysautonomia. In fact, most dysautonomia patients do not experience syncope (clinical term for fainting).
- Symptoms in multiple organ systems (i.e., cardiovascular, pulmonary, gastrointestinal, neurological)
- Abnormal orthostatic vitals: The orthostatic vitals test is used to evaluate the body’s response to a change in position. It identifies changes in your heart rate and blood pressure when you are resting, sitting, and standing. The test can reveal how your body responds to orthostatic (upright) stress. It’s important to note that with POTS and adolescents, the abnormal increase in heartrate and beats per minute upon standing is 40 bpm instead of the 30 bpm in adults.
Does this sound like your child? If you’re hesitant to even consider dysautonomia, we do understand. After possible misdiagnoses and multiple doctor appointments, it’s easy to get discouraged. On the one-hand, you want answers, but on the other, you may be thinking to yourself, “I don’t want it to be dysautonomia.” And it may not be. The only way to find out is to assess your child’s symptoms and find a provider who understands dysautonomia. We can help you with both of those steps.
TAKE THE AUTONOMIC DISORDERS ASSESSMENT
Autonomic Disorders Assessment:
This is a free educational assessment which can be used by individuals who suspect they may have an autonomic disorder or those who have already been diagnosed with an autonomic disorder. This assessment allows undiagnosed patients to screen their symptoms to determine if they have a higher or lower risk for an autonomic disorder. Patients can print a report that summarizes their symptoms and take it to their provider. We encourage patients to repeat this assessment in the future to identify trends in health by saving a copy of this assessment report and sharing it with their providers.
FIND A PEDIATRIC PROVIDER
It’s critical to find a provider who understands dysautonomia. TDP has compiled an up-to-date list of providers who see patients with dysautonomia. Our Find a Provider database includes providers from across the United States. We are fortunate to have a good number of pediatricians listed in our database.
GET A COPY OF THE DEFINITIVE GUIDE ON DYSAUTONOMIA
The Dysautonomia Project was first published in 2015. It was written by patients and physicians for patients and physicians. It was the first of its kind and has helped to bridge the gap between what autonomic specialists know and what patients and community-based providers need to know. It is our definitive guide on dysautonomia to date. We highly recommend taking the book to your child’s provider and keeping a copy for yourself.
Mark your calendar for June 15 – July 15. Each year we run a promotion to send a free book to a health care provider. Create a list of health care providers and submit during the “free book to your healthcare provider” and we will send them a book in your honor.
We share the highlights of the book throughout the website, so you can start taking steps toward helping your child. The book is comprehensive and compiles all the information in one place. When you’re ready to dive deeper into the content, you can take that step. In the meantime, let us help you learn the basics about dysautonomia right here on this site.
BE PREPARED FOR YOUR CHILD’S APPOINTMENT
- Bring a complete list of your child’s symptoms. Have a copy of this list to give to the provider for their records. Document when the symptoms started and their severity.
- Come with a list of the questions you have for the provider. One of those questions should be, “Do you have experience treating patients with autonomic nervous system disorders?”
- Make copies of any relevant medical records and lab results if you have them available and give them to the provider.
- Don’t be surprised if the provider can’t conduct a complete autonomic disorder assessment in this first appointment. You may have to schedule a follow-up appointment.
- For more on how to prepare check out: Preparing for Your Medical Appointments.
HELP YOUR CHILD LEARN TO TAKE OWNERSHIP OF THEIR HEALTHCARE
As parents, we are the primary advocates for our kids. When they grow up, we pass that baton to them in stages. If your child is diagnosed with an autonomic disorder, it’s important to involve them in the process of tracking and managing their symptoms and working with the doctor to create a treatment plan. We can empower our children with age-appropriate tasks they can do related to managing their care and recording how their body is responding to treatments. The more they learn to advocate for themselves and communicate with their provider, the more effectively the provider can identify treatments that work and rule out treatments that don’t. Because dysautonomia doesn’t have a cure, some will live with dysautonomia into adulthood. As they mature, they need to take ownership of their own healthcare. This includes eventually engaging them in the process of making appointments, maintaining a medical records file, and navigating healthcare insurance when appropriate.
LEARN, ALONG WITH YOUR CHILD, EVERYTHING YOU CAN ABOUT DYSAUTONOMIA
Our mantra at TDP is that education is the number one treatment. It’s why we exist. We’ve seen the difference education can make, from decreasing the amount of time it takes to get diagnosed to empowering patients as they take ownership over their healthcare. We encourage you start with these articles.
Flip the Clinic: Managing your own healthcare
