Postural orthostatic tachycardia syndrome (POTS) is an autonomic disturbance characterized by symptoms of orthostatic intolerance that are associated with the presence of excessive tachycardia, light headedness, fatigue, sweating, tremor, exercise intolerance, syncope upon standing.
Ehlers-Danlos Syndome (EDS) is a genetic connective tissue disorder that is caused by a defect in the structure, production, or processing of collagen or proteins that interact with collagen. Collagen is kind of like your body’s glue it holds your skin, joints, blood vessels, and other major organs in place.
In March 2014, our lives change dramatically; Taylah became unwell with Ross River Fever and unlike most people, Taylah never recovered. Months went by with Taylah unable to get out of bed and worsening symptoms. In this time, she had multiple visits to the local hospital and consultations with paediatricians but we were left with no answers. We were told that it was a post viral syndrome and that she just needed to try harder, get up and get back to school. The harder she tried, the worse she got, Taylah was fainting constantly, suffering from severe joint pain, nausea, daily headaches, heat intolerance, noise/light intolerance, orthostatic intolerance, shortness of breath, sleep disturbance, fatigue, rashes and tachycardia. In July 2014, I could not bear to see my child suffer any longer, we decided to go to the ED at Westmead children's hospital. It was there, that Taylah was diagnosed with a condition called Postural Orthostatic Tachycardia Syndrome (POTS). Finally, we had found a Doctor who knew what was going on with my child. Taylah was admitted to The Adolescent Unit for two weeks for treatment. During this time, she was also diagnosed with Ehlers Danlos Syndrome (EDS), a connective tissue disorder. They reviewed her medications and started her on a physio program. After staying at the Unit, Taylah managed to attend school for a few hours a week to finish her year 10.
During the next 12 months, Taylah did not get any better; she became unwell with recurrent viral illnesses and ended up with pneumonia in June 2015. It was at this time we decided to pull Taylah out of Year 11 and focus on her health. This was one of the hardest decisions I had to make as her mother; she went from an 'A' grade student to a 'C-grade student overnight. She was unable to focus or string a sentence together. Her school work became impossible to manage and as a parent, this was soul destroying to watch. In the following months, Taylah got no reprieve from her symptoms; she was still suffering daily with constant head pain, joint pain, brain fog, cognitive impairment, nausea, chronic fatigue, sleep disturbances, heat intolerance, tachycardia and orthostatic intolerance.
In July 2015, Taylah became unwell with Glandular fever and her Pots symptoms became worse. It was during this time that Lachlan also became unwell; he had been suffering from recurrent viral infections and started to show POTS symptoms. He had been having fainting spells and was suffering from fatigue, nausea, insomnia, orthostatic intolerance, headaches, brain fog, joint pain, tachycardia and loss of feeling in his lower limbs. After watching his big sister go through the past 14 months, you could only imagine how distressed he was, he had been hiding the symptoms in fear of a similar diagnosis to his big sister. If he ignored the symptoms, they would go away. Lachlan saw the team at the Adolescent Unit In July 2015 and was diagnosed also with POTS and EDS.
After months of research on these conditions, we decided to take Taylah and Lachlan to another specialist. Through a support group, we learned of a Cardiologist and Neurologist at RPAH with a special interest in POTS. After multiple tests, they confirmed Taylah and Lachlan’s diagnosis of POTS and EDS. It was at this stage that a further diagnosis of Fibromyalgia was made and in addition to Taylah being diagnosed with a Craniocervical instability. Since June 2016 we have been working closely with the team of specialists from the RPAH.
In the medical community, POTS is a widely under diagnosed condition and as a result, advancement in medical treatment has been greatly affected. After suffering for over three and a half years and working closely with Taylah and Lachlan’s specialists, we have found little to no relief from medications or any other treatments here in Australia. These conditions have left Taylah and Lachlan homebound and unable to leave the home without the support of their mum who is now their full-time carer or other family members.
Taylah’s life has been significantly impacted by these conditions, she suffers daily with chronic pain and as a result is unable to study, work or participate in age appropriate social activities. Taylah has missed a big chunk of her teen years as she has spent the past 4 1/2years at home sick. She has not been able to enjoy or participate in any of the normal teen activities and has missed out on the big milestones such as finishing her HSC and attending her Year 12 formal. She is also unable to get her driver’s license and during the past three years, she has lost contact with most of the friends whom she grew up with. After living with these debilitating illnesses for the over 4 1/2 years she has lost all hope that her conditions will get any better.
Lachlan’s life has also been severely impacted by these conditions and after missing most of Year’s 8 and 9, he was left with no option but to continue his education via distance education on a reduced work load. He is barely making it through year 10 and can only manage a few hours of school work a couple of days a week. He is often unwell with recurrent viral illnesses that leave him bed bound for days. Lachlan went from a healthy active teenager with a great passion to play soccer, to a teen that can barely get out of bed on most days. He has also lost hope of getting better and is often withdrawn and depressed about his future living with these conditions
After exhausting all treatment options here in Australia over the past three and a half years, all hope of ever improving has faded fast, however, after my extensive search to find some sort of relief or cure for my children, hope has been found in a treatment centre in the US. The POTS and Dysautonomia Treatment Centre in Dallas offers a unique treatment option to help reduce the symptoms of POTS. The centre's whole commitment and treatment regime is dedicated to people like Taylah and Lachlan who suffer from a malfunction of the autonomic nervous system. The centre offers a combination of treatments that include biofeedback, exercise and nutrition, treatment of the autonomic nervous system, physiological stress management, and regulation of the heart rate.
The POTS treatment centre has successfully helped many people suffering from the same conditions as Taylah and Lachlan. Their web page shares many testimonials of people just like Taylah and Lachlan who went in with severe and debilitating symptoms and after only 2 weeks of treatment, they have gained life changing improvements to their health. This treatment will help Taylah and Lachlan so that they can begin to live their lives free from pain and suffering.
After a phone consultation with the treatment centre in Dallas, we have decided that this treatment program is what Taylah and Lachlan need. With a 95% success rate, this treatment centre brings hope that Taylah and Lachlan may be able to live a normal independent life. As the cost of this treatment is beyond our reach, we are appealing for your help to assist with the expenses required to get them this treatment. Your donation will go towards the cost of the treatment program, medications, flights, accommodation, transfers, and exchange rates. Taylah and Lachlan need $45,000 to help pay for their treatment.
Links to the Dallas POTS treatment centre;
Link to our Facebook page;
Thank you kindly for taking the time to read our story and for your generosity and support in considering a donation to help give Taylah and Lachlan a chance to live a life free from pain and suffering. If you are unable to help with a donation at this time, can I please ask that you consider sharing the link to our GoFundMe page or our Facebook page. We would be eternally grateful for any support you may be able to offer us.
Heidi, Taylah and Lachlan
- Geoff Mascord
- Lazy Dayz Cafe
- John Borg
- Dee McManis
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