There is nothing that will hurt a parent more than hearing that your child has an incurable illness like Dysautonomia. For sure, kids with this condition won’t need to get radiation therapy, which is often necessary for cancer patients. Staying away from sweets or having insulin injections practically forever is just for the diabetics as well. But the fact that a kid will most likely struggle with the disease for as long as they live after the diagnosis of dysautonomia can’t be comforting either.
Dysautonomia is the medical term for when the autonomic nervous system (ANS) a part of your nervous system that controls involuntary body functions does not work as it should. The disorder disturbs cells in the autonomic nervous system, which controls involuntary actions such as digestion, breathing, pupil dilation, kidney function, sexual function, and the regulation of blood pressure and body temperature. Many symptoms vary widely, but they can include vasovagal syncope or vasovagal neurocardiogenic syncope (fainting spells), low blood pressure problems, abnormal heart rate, erectile dysfunction, difficulty swallowing, chest pain, and breathing problems. Dysautonomia is a glitch in the autonomic sensory system that can occur for many reasons. Primary autonomic nervous system disorders happen because of hereditary or degenerative illnesses that influence the nerve cells and sensory systems.
According to Dysautonomia International, dysautonomias affect more than 70 million people worldwide. They come in many forms and can be primary or secondary. There are many forms of dysautonomia that can occur at any age: pediatric, adult, and/or geriatric. The diagnosis of dysautonomia depends on the overall function of three autonomic functions – cardiovagal, adrenergic, and sudomotor.
Optional autonomic neuropathy or secondary dysautonomia occurs because of a physical issue or other diseases (e.g., autoimmune diseases, multiple system atrophy (MSA), etc.). A possibly more common form of it is postural orthostatic tachycardia syndrome (POTS). POTS is a dysfunction of the autonomic nervous system that involves abnormal symptoms in many parts of the body, including abnormal blood flow to the heart, lungs, blood vessels, and brain.
Dysautonomia can be a mild temporary condition or a serious long-term illness. The most common sign of dysautonomia is orthostatic intolerance, which means you can’t stand up for long, without feeling faint or dizzy. In severe cases, people might have life-threatening complications such as pneumonia and respiratory failure. Doctors call this orthostatic hypotension.
Other diseases that are associated with dysautonomias are Ehlers-Danlos syndrome, Sjogren’s syndrome, and rheumatoid arthritis. Dysautonomia can also occur as a primary condition or in association with neurological disorders such as Parkinson’s disease.
Certain conditions and events can bring on the symptoms of dysautonomia. These triggers include alcohol consumption, dehydration, stress, tight clothing, and hot environments.
Parent’s Thoughts After Their Kid’s Dysautonomia Diagnosis
The typical thoughts of parents who witness generalized dysautonomia or primary dysautonomia or familial dysautonomia or pure autonomic failure symptoms in motion include “If only I can transfer their pain to me” and “I hope a miracle will happen and dissolve the dysautonomia project and underlying condition it comes with.” Neither, of course, is plausible at the time of writing this blog. You may leave treatment to the physicians and focus on helping the child with dysautonomia in other ways instead.
- Never Doubt Your Kid’s Words Immediately
The most prominent fear of parents whose youngster has autonomic dysfunction is that they might use their dysautonomia information page to get out of unfavorable situations. In case you ask the child with dysautonomia to clean their room, for instance, they may say that they’re dizzy or feeling unwell due to central nervous system degeneration. Despite that, it doesn’t mean that symptoms like frequent lung infections, diabetes due to autonomic neuropathy, blurred vision, lack of bladder control, decreased pain sensitivity, and other autonomic medical conditions aren’t there.
When you live in the same house as your kiddo with dysautonomia, you should know by now whether they’re capable of efficiently lying or not. If they are, you may scrutinize your kid further before believing they aren’t in great health. Considering they don’t lie or are not good at it, however, then you shouldn’t draw conclusions about what they’re saying about dysautonomia before they even finish talking.
- Ensure That They See Their Dysautonomia Doctor On A Regular Basis
It is also essential for anyone with dysautonomia to get checkups with a specialist regularly. Even though it won’t be cheap, that’s the best way to understand the progression or regression of dysautonomia.
- Maintain Your Composure
When kids go through puberty, they develop mannerisms and ideas that can make a parent happy or sad. It’s cool in case your kiddo is one definite cookie, to the point that the symptoms of the dysautonomia don’t faze them too much. But once they give in to their rebellious side despite dysautonomia and start talking back at you or sneaking out at night, you might lose your calmness before you know it.
Will your outburst help your kid with dysautonomia? No. If anything, it may merely aggravate the situation as the children with dysautonomia see how much effect it has on you. So stay level-headed to help your offspring with dysautonomia better.
Sometimes the cause of a chronic illness/condition can be identified, but often no specific cause can be determined and nothing can explain why it happened. — Dan Mager MSW
- Consider Joining Dysautonomia Support Groups
Taking care of a child with dysautonomia can’t be as straightforward as dealing with a regular kid without dysautonomia. It may well be like stepping on eggshells in the beginning because there are things you can’t expect the patient with dysautonomia to do, e.g., go to classes even with a terrible headache.
Joining a dysautonomia support group may help some moms and dads overcome this issue. The dysautonomia organization ideally consists of parents whose children have dysautonomia too. You may ask them dysautonomia questions and garner advice on how to help your youngster with dysautonomia better.
- Subject YourselvesToFamily Counseling
Whether your child is six or 16 years old, you may speak with a counselor together and deal with the psychological aspect of dysautonomia. The ups and downs that come with dysautonomia, after all, don’t affect the patients. While the latter feels its dysautonomia symptoms alone, knowing that you can’t alleviate their dysautonomia can be burdensome for parents. You might be concentrating too much on the dysautonomia kid as well, which may cause your other children to rebel or develop adverse feelings toward the entire family.
Through a dysautonomia group counseling session, you’ll be able to address all dysautonomia issues. You can learn coping mechanisms for dysautonomia as a family as well and become one another’s rock.
Final Thoughts – Dealing With Kids With Dysautonomia
It’s definitely not a walk in the park to know your kid has dysautonomia. Dysautonomia is a lifelong condition. You and your kid will face multiple hardships from dysautonomia. There is currently no cure for any form of dysautonomia, but secondary forms may improve with treatment of the underlying disease. You need to stay strong and work together in managing dysautonomia. The good news is there are many dysautonomia researchers at the National Institutes Of Health looking for ways to cure dysautonomia once and for all.
- Does dysautonomia shorten your life?
- Which dysautonomia is fatal?
- Can dysautonomia be caused by stress?
- Does dysautonomia get worse over time?
- What kind of doctor treats dysautonomia?
- What is the difference between POTS and dysautonomia?
- Is dysautonomia inherited?
- What diet is best for dysautonomia?
- What diseases cause autonomic dysfunction?
- What are the signs and symptoms that your nervous system is malfunctioning?