Any parents of kids with Autonomic Dysfunction or Over Sensitization?

Posted by allysonl @allysonl, Jan 14 8:05am

My 12 year old daughter was just seen at Mayo clinic and was given the diagnosis of Autonomic Dysfunction and Over Sensitization. She has a daily headache, regular dizziness, tingly nerves and fatigue. She is mentally tired of fighting this. We are doing the STEPS for POTS, and Cognitive Behavior therapy. I am seeking other proven ideas or connection with other kids/ parents with this diagnosis for a support system. Thank you

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Colleen Young, Connect Director | @colleenyoung | Jan 14 6:34pm

Welcome, @allysonl. I'm so glad that you have the support of Mayo Clinic for you and your daughter. I'm tagging fellow members like @mama4 @sdavisali @ljgotschall @kds1236 @sdavisali @trentlee71 @concernedmtnmom @saganjames, who have experiencing with teens and autonomic dysfunction and POTS. @rwinney may have some encouraging experiences to share with her own management of Central Sensitization and the program at Mayo Clinic (not pediatric).

I can imagine that she is mentally tired of fighting and searching. I'm sure you are exhausted too from concern for your daughter. The road to recovery will take time, but there is a road to recovery. That is good news.

Has this affected her attendance at school?

Rachel, Volunteer Mentor | @rwinney | Jan 15 2:51pm

Hello @allyson1. I have empathy for your daughter, being quite young and facing these challenges. Surely, as a mom you are frustrated and drained watching her become tired of fighting her recent diagnoses. I agree with Colleen @colleenyoung, there is a road to rehabilitation and the potential for recovery. You are in good hands with Mayo Clinic and I'm glad you are being guided.

At 12 years old, the brain is a sponge making it that much more promising for her to absorb learning ways of behavioral changes and modifications such as CBT therapy. I am a very big proponent of CBT because it has helped, and continues to help me navigate my way through Central Sensitization Syndrome. CSS is the umbrella diagnosis of my chronic pain and sensory issues such as headache/migraine, back pain, and muscle and nerve pain. CSS encompasses issues like POTS and chronic fatigue as I'm sure you are starting to learn about.

In all honesty, the other proven ideas that you are looking for, in my opinion, best lie within what might be lifestyle changes for your daughter. Things like modified and moderated physical exercise, healthy nutrition, hydration, stress-management, belly breathing and mindfulness.

I have a now 22 year old daughter who began having supraventricular tachycardia (SVT) around age 11 and by 15 had a catheter ablation of the heart. After that, she began having chronic headaches for several years. I do understand the fear and sadness you must be feeling, and learned how difficult it was to put on a brave, calm face for my child.

Please keep the faith and remain hopeful not only for your sake, but your daughter's sake as well because at the end of the day, what you and your girl are going through is treatable, even if it's a huge disruption to what should be the "normal life" of a 12 year old. What is your first next step? Has she begun CBT yet and will that be offered through Mayo?

saganjames | @saganjames | Jan 16 10:14am

I know a lovely 15-year-old young lady who was diagnosed with POTS about 2 years ago. After many different treatments, she is now getting much better based on her treatment at CFNC, Carolina Functional Neurology Center. According to her mother, a healthcare professional, CFNC patients come from all over the US. I also understand from her mom that CFNC offers a free 15-minute consultation to be sure they are a good fit. Their website is: https://www.carolinafnc.com
Hope this helps anyone dealing with central and/or peripheral nervous system issues. Believe me, I have no interest in CFNC other than to help those with these miserable disorders.