- This topic has 3 replies, 3 voices, and was last updated 4 years, 1 month ago by .
- You must be logged in to reply to this topic.
My 17 year old son has been diagnosed with EDS hypermobiltity and pots/dysautonomia. He recently has not been able to swallow regular food, we have to puree everything. He has had a upper GI scope done with normal results and a manometry study done with very low pressures. I would like to know if anyone here has dealt with similar issues and if anybody can give us any advice. We have been told so far that there is nothing that can be done.
I too have terrible swallowing issues. Mornings are worse for me. And it comes in flares during the day. I’ve been told it’s due to vagus nerve damage. After many doctors nobody has been able to give me any help either. I do take a small amount of klonopin when the flares are severe and it seems to help some. It works on the cns which in turn seems to help with the swallowing. It is labeled an addictive drug so you need close monitoring Talking too much or any stress makes swallowing much worse for me so I have social anxiety along with it. I’m so sorry your son is dealing with this problem. It is hard to explain to people how terrible this symptom can be. I am considering the Parasym plus with hopes of it helping this problem but need to get my digestive issues calmed down before starting since from what I’ve read helps people with bowel paralysis. I have the opposite problem unfortunately. Have you tried this supplement with your son yet?
All you can do is keep trying. You last hope is prayer which can heal biggest of the problems……..!
We have not tried that supplement yet,I will look into it. Thank you for the kind words. Any help is very much appreciated, my son is so skinny he doesn’t need to deal with anything else.
This website was created to inform, educate and brainstorm with fellow patients and doctors. The content should not be used as a substitute for professional medical advice, diagnosis or treatment. Readers are encouraged to confirm all information with other sources and their physicians. The creator of this site will not be liable for any direct, indirect, consequential, special, exemplary, or other damages arising from the use of this website.
“Dr. Diana will always hold a very special place in my heart for her selfless devotion to helping everyone, not just the Ehlers-Danlos community. I hate to think what my life would be without her insight and guidance.”
-- Chris Gross