POTs and mitochondrial disorder?

[Tasha02]

Hi there

My son has experienced a range of odd symptoms since he was 7 years old including reflux, hand tremor, peripheral neuropathy and most of all fatigue. He had testing for a ? mitochondrial disorder several years ago he had raised lactate levels but only minimally, he had a nerve study with some unusual findings but nothing conclusive. Since then he has a healthy diet, physical therapy, vitamins, he loves school and loves life generally but get fatigued all the time, he also gets constant aches in his feet and is accident prone falls, drops things when he tired which is really difficult for him to cope with. He ends up missing school and fun events. He will be 13 this week.

With our son we just thougth that this is something nobody understands and he just has to live with it. However now our daughter is getting fatigue, an irregular heart beat, dizzy spells, nausea. They are wondering if she has POTS syndrome. Our son went for numerous tests and now the process is beginning with our daughter which is so frustrating.

Anyway as a parent I finally thought I would ask for some help and advice. I would like to have both of my children evaluated. I don't think its right to have two happy children who are exhausted so often. It is so sad to see one minute they are happy normal children and the next burnt out. They are happy at school, have great friends, both have hobbies of music and dance which they love - but I want them to be full of energy like other kids - I want to help in some way! It is so sad to see 2 motivated children have to live like this - you only have one childhood!

I would be happy to travel anywhere for help. We have friends who live close to the Cleveland Clinic - we just would like some help.
So hope to get a response - thank you in advance!!

[DrKyprianou]

Hi there.  I have a Biofeedback Program that has been highly effective with treating POTS symptoms and various other conditions.  I help my patients control their Autonomic Nervous System in order to alleviate many of the symptoms that result from autoimmune diseases and other chronic conditions. Visit our website at biofeedbackusa.com to get more information or call me to chat at 214-369-8717.  I can only imagine how difficult it is to watch your children struggle with these symptoms.  They don't have to struggle with this their entire life, they can get help.  Many people are struggling with POTS and other Autonomic Nervous System problems and feel hopeless.  It's easy to get discouraged that these symptoms cannot be cured, but I have helped thousands of patients control their symptoms without medication or invasive procedures.  Hope this helps!  

[LilliannasMom]

Look into the National Institute of Health's Rare and Undiagnosed disorders program