Postural orthostatic tachycardia syndrome (POTS) is one of a group of disorders that have orthostatic intolerance (OI) as their primary symptom. OI describes a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom of OI is lightheadedness or fainting. In POTS, the lightheadedness or fainting is also accompanied by a rapid increase in heartbeat of more than 30 beats per minute, or a heart rate that exceeds 120 beats per minute, within 10 minutes of rising. The faintness or lightheadedness of POTS are relieved by lying down again. Anyone at any age can develop POTS, but the majority of individuals affected (between 75 and 80 percent) are women between the ages of 15 to 50 years of age. Some women report an increase in episodes of POTS right before their menstrual periods. POTS often begins after a pregnancy, major surgery, trauma, or a viral illness. It may make individuals unable to exercise because the activity brings on fainting spells or dizziness.
Doctors aren't sure yet what causes the reduced return of blood to the heart that occurs in OI, or why the heart begins to beat so rapidly in POTS. Current thinking is that there are a number of mechanisms. Some patients have peripheral denervation (neuropathic POTS); some have symptoms that are due to sustained or parosyxmal overactivity of the sympathetic nervous system (hyperadrenergic POTS); and some individuals have PTOS dominated by features of deconditioning.
So for Jacob it means that when he stands up, he gets super light headed and dizzy and will pass out. And that is what we had been experiencing for the past month or so. It is something that will forever plague him and make him uncomfortable. Right now he cant really get off the couch without feeling dizzy. So he pretty much just stays down laying down because thats about all he can do. Plus being dehydrated all the time makes him dizzy and light headed. So he is getting it from both ends. This is a new diagnosis for us and we are not sure how it effects him completely yet so this is something we are trying to research and find out ways to treat it to make him feel comfortable.
We did find one solution that helps him feel better. Last week, his sats were low. So I gave him oxygen and then got busy. I totally forgot that he had it on and went like 3-4 hours with the oxygen on him. When I finally figured out that he still had it on, I took it off and he said he felt so much better! It was amazing how good he felt. He was like a totally different kid. He was hyper and had tons of energy again. Of course that is always short lived because of the mito, but it was nice to see him so happy for once. So of course seeing how good it made him feel I decided that he needs to be on it for a few hours every day. And it has been great! But because of this new change, his ped wants us to see a pulmonologist to make sure that this new oxygen thing isnt because of something in his lungs. So pray that if it is, they find the answers and its something easy to deal with.
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