kjmom

Thank you. It's been a very tough road. She's been out of school since December and is missing her life. She doesn't seem to be close to getting her period yet, so I guess that's one less thing to worry about. Her weight loss has probably further delayed that as well.

Yes, she's been extensively evaluated for stomach issues before POTS was diagnosed, since we thought it was solely a GI issue. She's had ultrasounds, CAT Scan, MRI, endoscopy/colonoscopy, gastric emptying, etc. She's had every blood test for Celiac, allergies, bacteria, etc. and all came back normal. Diet and probiotics don't change her pain.

My DD has been on Florinef for almost 2 weeks and her doctor wants to catch up by phone tomorrow to discuss her progress. She feels somewhat hungrier and has a bit more energy, but otherwise she still feels lousy. Her belly pain still persists. Should she be feeling better by now if the meds are helping? Are there any other meds that I should ask about? Also, I've been researching Ehlers-Danlos and she seems to meet the criteria for the hypermobile type. I plan to ask the doc about this as well...would this change the course of treatment? Thanks in advance!

I started my DD on it recently and it's made a world of difference for her insomnia. Her heart rate is always running high so I suspect her SNS is over active.

Thanks for the link! I just got it for my Kindle. Just read a few chapters and it seems unite helpful for someone like me with a POTS child. There's great info about dealing with school.

My DD (who just got diagnosed with dystautonomia) had a positive ANA and Sjorgren's, but the docs said they were false positive. She is hyper flexible in her small joints and incredibly soft skin, which her doc said was common in this condition.

Thank you SO much to everyone who responded! This forum has been incredibly helpful to educate me on this illness. I had never even heard of it before. It bothers me that none of the docs we saw throughout this process even mentioned dysautonomia, and we saw some of the best pediatric docs in the country (at CHOP and Dupont). I am so thankful that we finally got the answer and didn't have to go through years of uncertainty. Now I'm wondering if the chronic daily headache that I've had for the past 3 years may be related. How frequent does this illness occur among family members?

Hi! I've been getting so much information from this website so I figured I should post and introduce myself. My daughter has been sick since the beginning of Dec with stomach pain, nausea, weight loss, extreme fatigue, insomnia, brain fog, etc. We've been to every type of doctor trying to figure out what's wrong with her and she's been through countless tests. Finally, we got an appt with a pediatric diagnostician, who was the first person to mention dysautonomia to us. He started asking all of these questions that I thought were unusual but she answered yes to every one. Then he took her HR and BP when lying down and standing...her HR went from the 80s to the 130s when she stood up! I had no idea. He wanted to test her for gastroparesis to see if we could figure out her stomach issues (since this is her primary complaint), but the test came back normal. Still, since all of her symptoms fit, he diagnosed her with dysautonomia/POTS yesterday. She will be starting on Florinef. We are scared but so relieved to have a name. But I still have some questions: What could her stomach pain/nausea/weight loss be from if it's not gastroparesis? Are there other causes with dysautonomia? What can help? We discovered that the only relief she gets (albeit temporary) is being completely submerged in a pool. She acts like her old self in there - happy, energetic, little pain. The doc mentioned something about the pool counteracting gravity...is that true? Do others have that experience? I see a lot of adults on here with this condition, but does anyone else have a child with it? Has he/she been able to return to school? She's been out of school since Dec and it's killing her. She hates missing out. Thanks for reading my story and answering my questions!