I have a daughter who has Ehler-Danlos Hypermobility Type, and a variety of symptoms that we’re not always sure can be attributed to her EDS, or if they’re something else. I tend to try and take a more ‘holistic’ approach to my daughter’s care, and look at things as interconnected, I think there’s so much we don’t know about EDS and especially the genes sometimes and it’s quite possible these things are more connected than we think. They could also be disconnected, it’s hard to know, but I wanted to mention POTS (postural orthostatic tachycardia syndrome) to other parents if you haven’t heard of it before.
We noticed my daughter was extremely lightheaded, feeling weak, and abdominal pain, stomach issues, etc. This wasn’t anything new for us, just constantly looking at symptoms. Then, I heard from another parent about POTS. POTS is a type of
– it’s a type of autonomic nervous system malfunction. While the current diagnosis criteria for POTS is “A heart rate increase of 30 beats per minute (bpm) or more, or over 120 bpm, within the first 10 minutes of standing, in the absence of orthostatic hypotension.” (This varies for children). It’s more inclusive than just an increased heart rate,
many people with POTS experience fatigue, headaches, lightheadedness, exercise intolerance, nausea, diminished concentration, coldness or pain in the extremities, chest pain and shortness of breath. Those were all things that my daughter was experiencing.
The most common treatments for POTS include increasing fluid intake to 2-3 liters per day; increasing salt consumption to 3,000 mg to 10,000 mg per day. My daughter has always craved salty foods. She can’t get enough salty food, and we think this is a part of the reason why, her body needs it. Some people take beta blockers to help with POTS or SSRIs, but it’s really different from person to person, and I think it’s just a part of the picture. It’s something to keep in mind if your child has Ehlers-Danlos Syndrome or any of these conditions that it tends to be associated with: diabetes, a slew of genetic disorders, lyme disease, MS, and chiari malformation.
There isn’t one set or specific treatment that’s a be-all cure all, it’s figuring out what works for your child, and at least there’s comfort in giving a name to some of these symptoms. I have to also realize that she may experience lightheadedness and weakness because of other things going on in her body too, so treating POTS may not relieve everything.
For my daughter, increasing her fluid intake has been really valuable in a range of ways. She’s always disliked just drinking plain water, I know that sounds strange, but she’s always complained of the taste.
Some resources:
– POTS Symptoms
– Dysautonomia International – POTS
