I’m sure many of you reading this will understand when I say I feel like a detective with an honorary medical degree desperately trying to put together the pieces of this autoimmune puzzle. To say this challenge is exhausting mentally, as well as physically, is an understatement.
My diagnosis of Antiphospholipid Syndrome came after my second miscarriage. As fate would have it, my OB/GYN also had a pathology interest. Many obscure labs were done to try to understand why I had two previous uneventful pregnancies, and now back-to-back miscarriages.
Around this time I was extremely fatigued, lost lots of weight, had a weird lacy looking rash on my arms and legs and fevers and sore throats that would come and go. My OB/GYN is the one who diagnosed me with APS and possible SLE. This was 1993.
Flash forward to 2014. My 18-year-old son was recently diagnosed with non-specific autoimmune activity. In 1995, I gave birth to my third child after an extremely stressful pregnancy and delivery. My son was born septic with breathing difficulties, digestive issues and an immature brain stem at 37 weeks. He has had one medical setback after another since his birth which precipitated visits to multiple specialists. At each specialist appointment, my “mom radar” always kicked in and I would ask, “Does this have anything to do with my autoimmune issues?” Amazingly, each specialist responded with resounding “no.”
The years in between were really quite rough. What I now know are “SLE flares” came and went like a rollercoaster. Up and down. I hit rock bottom when I physically could not get off my couch and after 14 years, I was formally diagnosed with SLE in 2007. Once my treatment protocol started, the flares were managed.
Right around this time I noticed my son starting to walk with an abnormal gait and suffer from migraine activity. His digestive issues were daily. Again, each specialist treated him for his complaints and not one doctor was listening to me regarding the possible autoimmune connection.
2009 saw the H1N1 virus hit the Houston area hard. My son contracted H1N1 and his health rapidly declined. This “event” changed our family’s life forever. His abnormal gait was even more pronounced. He developed slurred speech and brain fog. Digestive issues were off the chart. Migraines were unmanageable. He was completely homebound, unable to attend school.
We ended up in the hands of a highly esteemed researching pediatric neurologist who quickly conducted every test imaginable. I asked this doctor about the autoimmune issues and for the first time, we had a doctor answer us with an honest “I don’t know.” My son complained at one visit with this doctor that he felt dizzy – a new symptom. He was immediately sent to a pediatric electrocardiophysiologist who performed a Tilt Table Test. My son failed it miserably.
He was diagnosed with Neurocardiogenic Syncope, a form of Dysautonomia. An echocardiogram revealed a Patent Foramen Ovale (hole in the heart) and it was quickly closed. This doctor had been studying the link between PFO and migraines. Two years after the closure, my son’s migraines have markedly lessoned in intensity.
Interestingly enough, within this time frame, my 24-year-old son had started to show symptoms of Dysautonomia. Sure enough, he failed his Tilt Table Test and was formally diagnosed. His symptoms are controlled with medication and he is doing quite well.
These two doctors began noticing more and more children coming to them with similar symptoms as my son. They started to collaborate on research projects and invited other specialists to join them. In 2013, the Dysautonomia Center of Excellence at UT Health Science Center/Memorial Hermann Hospital-Texas Medical Center opened its doors.
One of these specialists is an immunologist/rheumatologist who diagnosed my son with immune issues, as well as non-specific autoimmune activity! There it was! My connection that I carried in my heart for 18 years!!!!! Studies are now suggesting a direct autoimmune connection for some forms of Dysautonomia. The puzzle is on its way to completion.
Our family is currently involved with a genome study jointly researched by University of Texas and Baylor University. As you can imagine, with all the research activity being conducted at the Dysautonomia Center of Excellence (especially the autoimmune research), we wanted to be part of it and help with awareness and funding. We decided to establish the Lamb Foundation for Dysautonomia Research to assist with issues.
My parting thoughts? Trust your mom radar. It’s rarely off. My hope is that my story and the number of years it took to find a doctor who listened encourages more moms to be proactive with their own health and that of their children’s.
About the Author
Meredith lives in Houston, Texas and acts as the Executive Director of Lamb Foundation for Dysautonomia Research. Information on the Dysautonomia Center of Excellence and their doctors can be found on their website.
This blog post was originally published by AutoimmuneMom.com, written by Meredith, and first published on Apr 26, 2014.