1tiredmama

At his last appt, my son was prescribed several new meds, one being Mestinon. He experienced slurred speech so I discontinued the Mestinon immediately. That was more than a week ago. I put a call in to his doctor, but I got no response. Now, my son has dropped a few pounds and he is nauseated upon waking. This is after months of wellness. So, my question is: What does Mestinon do for POTS? I'm wondering if removing it has caused the backslide. Thank you.

YES! My son lost 60lbs in 18 months. At diagnosis, the cardiologist said that he could nearly feel my son's spine through his stomach for lack of core muscle mass. The wasting away did not surprise the doctor. He said it can happen with POTS. Once my son is stable on meds, he will need to rebuild muscle in his legs and core. Muscle will prevent blood from pooling. As POTS patients lose muscle, the condition worsens and more muscle is lost. It becomes a downward spiral. Be sure to discuss this with your doctor. It is an important issue.

My son has PANDAS. His cardiologist said that it may be the cause of his dysautonomia. My son is not the first PANDAS/dysautonomia patient they have treated. A word of caution about the test Moleculera is offering: It does not seem to be a reliable test. Too many obvious PANDAS kids are testing as "unlikey." We recently expressed our concerns regarding this test to one of the top leading experts in the field. He did not defend the test or encourage us to do it. I believe the cost is $400 dollars, and our pediatrician warned that insurance companies often will not cover tests that are not FDA approved. I searched Molecula's site to see if the test is FDA-approved (and, I've been watching their site as they updated their progress in getting their lab and this test up and running.) I found no mention of FDA-approval. This is a brand new test. I was excited at first, but seeing so many false negatives was disappointing. If you choose to do it, bare in mind that the result may not be accurate. There are other blood tests that give solid information regarding the presence, or lack of, specific autoantibodies. You'll likely need to find a PANDAS expert to get the right and complete panel ordered. I highly recommend the following NIH document for excellent information regarding PANS/PANDAS. intramural.nimh.nih.gov/pdn/PANDAS-to-PANS2012.pdf (I could not get the link to post, but if you copy and paste to Google it should be the first result. Look for the exact match to this link.)

Thank you all for the warm welcome and the information I was seeking. I learned a few things! Very much appreciated!

My son is better late at night. During his worst flares of severe nausea and weight loss, he could only eat around 11pm. He didn't even want to go to bed because he knew he'd wake up to a new day of nausea.

Hello, everyone! I've been lurking for awhile, taking it all in. I have an 18 year old son with Asperger's, developmental delays, and PANDAS. After watching my son lose 60lbs in 18 months due to severe nausea, worse in the am, with no answers from 2 pediatric GI's, I finally figured it out myself. I Googled red hands/feet, low bp and temp, and weight loss/nausea. I really had no idea what I would find, but I did it! Two different doctors at The Children's Heart Institute have observed postural tach, hr doubles. Ttt was one of those occasions. Dx has dysautonomia, likely POTS. We have to see Dr. Abdallah for further tests and treatment. Trying to keep an 18 y/o (with a healthy desire to be independent) who has Asperger's inflexibility, poor reasoning skills, no concept of time, and very poor memory due to dysautonomia on the road to health is daunting. He wants to get better, even thinks he is drinking enough... And, he has been sick his whole life, so he doesn't even perceive/report symptoms. I have a few questions: * Why more tests? He's had an echo, ekg, holter, and ttt. What else can we expect? The last doctor mentioned bloodwork, beyond the regular ones he always gets. Looking for what? * How does heat affect you? My son became very pale, slow, and weak from running errands with me in a car with minimally functioning AC. Why does this happen? How cautious should we be? * Is tachy dangerous? He does not perceive it. Do I need to worry? What, besides standing, can bring it on? Heat? * Sometimes, I see him pushing so hard to physically keep up with his friends on outings. I know he's not feeling well, but I stay out of it. He needs some normalcy and independence. Am I doing the right thing (particularly in this heat?) Or should I limit him a bit until this condition is under control? He is 18, but I do have legal guardianship due to mental impairments as a result of his poor health. Thank you for sharing your knowledge and experiences. I admire all of you for putting one foot in front of the other each day, feeling energetic or lousy.