[cid:image003.jpg@01D04B3B.0B359900] Waldo our youngest, has been diagnosed this past week with a form of Dysautonomia called POT Syndrome*. Few medical doctors are familiar with POTS and after decades with this syndrome I (Nadia) have been diagnosed only a few years back. Of all the things I would want to pass on to my children … not this!
Below I explain in more detail what POTS is, but for us it means that Waldo must also now drink medication daily, and adapt his life style and diet in order to function. He tires very quickly, in fact he is not able to do more than two hours school without prolonged rest at the moment. POTS is weird in the sense that one can feel ok one moment and the next moment terrible. It waxes and wanes often and this may be the reason why many doctors could not diagnose this syndrome for so long!
POTS is often triggered at the start of adolescence. I have suspected POTS in Waldo for the past two years, but it became increasingly worse since his malaria and other sicknesses last year. He continued to be weak, tired, listless, complaining of nausea and dizziness (especially when standing), and recently he developed insomnia (typical for people with POTS), or falling asleep during school… The past summer holiday, better food and rest during the last two months did not seem to help… This week the doctor confirmed our suspicion.
And so the long road of living with this challenge officially starts for our youngest son. I can’t help but feel that it must be worse for boys/men to have POTS. They are supposed to be strong and active, not weak, pale and tired all the time.
Pray for Waldo. He needs to understand enough of this syndrome so that he can manage his body’s limitations better, but at the same time we don’t want him to fix his mind on being “sick”. He has many adaptions to make. Pray for courage and the ability to pull through tough times with the Lord’s strength. May he also learn that in his weakness is his strength if he relies on the Lord to BE his strength!
*What is POTS/Postural Orthostatic Tachycardia Syndrome? It is not easy to explain… “Postural” meaning “posture” together with “orthostatic” here means that the heart rate is inappropriately increased in response to position, especially standing but also in other positions. Changing posture worsen the effect (like bending forward). “Tachycardia” simply means rapid pulse or heart rate and “syndrome” is defined as a collection of symptoms and signs that tend to occur together.
For many years POTS have been misdiagnosed as mitral valve prolapse, since the symptoms are so much the same: heart arrhythmias, tiredness, light-headedness (especially on standing for a while), fainting or near fainting, headaches, exercise intolerance, chest pains, shortness of breath, temperature sensitivity and more. (Did I mention tiredness??!) It is an abnormality in the Autonomic Nervous System that regulates things like heart rate and force increase, small and large intestine motility, the liver’s ability to convert glycogen to glucose, adrenal secretion, blood pressure etc. New research shows an abnormality in the body’s cells which regulates energy conversion and release. In effect, no one knows what causes POTS or how to heal it. There seem to be a strong evidence that it often is inherited (Waldo is 4th generation – that we know of!- in our family that has it); It can only be managed and symptoms can be treated as best as possible. But since the medical science still does not know enough of the causes of POTS, they can’t really treat the syndrome or even the symptoms well.
See http://www.dysautonomiainternational.org/ for more information if you like!