Postural Orthostatic Tachycardia Syndrome (POTS)
– Jun 23, 2021(2 replies)
Our 17 year old has had POTS for years and I have finally given up on her pediatrician. I messaged her pediatrician about new GI symptoms on top of her regular daily nausea because of posture changes, heat, eating, anxiety, exercising, standing for too long and she wrote back that she should get a Covid test because of the nausea. I should not have to say that her nausea is not Covid related because it has been a chronic daily experience for years! Wrote the head of the teen POTS clinic and was told they have no GI docs to refer to are familiar with POTs and there is nothing to prescribe for most GI POTS symptoms which is outright not true because I’ve done the research. Honestly the POTS clinic and her pediatrician seem to not have a clue.
Anyway, anyone out there
1) have a Kaiser doc familiar with POTS or willing to take into account chronic conditions that may be affecting health (It seems insane that this is not a given)
2) know a decent GI specialist familiar or not with POTS?
3) have a physician outside of Kaiser familiar with managing POTS symptoms?
ThanksJun 23, 2021
Hi, My daughter has had POTS for a number of years now and we found no help at Kaiser. When we left Kaiser, we found 2 docs that have been the most helpful. The first is her cardiologist. They see lots of kids with POTS. We tried florinef first, the med of choice, but it didn't work for my daughter. She's tried a number of meds at different dosages and I'm happy to say that it is well controlled at this point with midodrine and metroprolol. The second is her integrative care doctor that found the underlying cause (tick borne diseases).
If you haven't done so already, monitor/increase her water intake and track his symptoms and water so you know how much to give him. My daughter responded well to salt tablets and water - we cut them into quarters so they are manageable and don't give a stomach ache. The water and salt are to raise blood pressure.
We used a pulse oximeter and bp cuff throughout the day to track things until we got a handle on it.
For digestive issues, one theory is that since the digestive track if smooth muscle, that it's also affected by POTS and kids can have a problem with digestion as well. We had my daughter eat smaller meals more often and massage her tummy before (and sometimes after) eating to motivate the peristalsis. She also developed leaky gut and our doc (lyme literate medical doctor) she helped us treat it and my daughter can now eat just about anything she wants. There's hope out there.
There are multitude of lifestyle changes that you can do. We were trained by a very knowledgeable provider and if you write to me, I can provide you with a list of resources and ideas. There's an organization http://www.dynainc.org/ for dysautonomia that has lots of resources for families, teachers, kids, etc. Hopefully there's something useful there.
I wish you and your family all the best.
This is a bit of a long shot, but you might try Dr. Stacy Jean Zambrano at Oakland Kaiser. I don't know how much she knows about POTS, but she is running an ME/CFS clinic and deals with chronic health issues. She isn't a pediatrician, but if your kid is 17, maybe she could see her. My main doc is a family physician, Dr. Ashley Phipps -- I don't know how versed she is in chronic issues, but she has been so supportive, referring me out and scheduling any tests I ask for. You will probably need to go outside Kaiser, but maybe these folks could be of help along the way.