Please help

Posted by mthurlow @mthurlow, Mar 20, 2019

Ok
I am desperate to find any answers. My daughter is 16 (17 in just a few days). 1.5 years ago she was a healthy girl that danced 5-6 days a week. First her primary noticed increased heart rates 170+. After a couple monitors, tests and trips to Childrens Hospital in KC they diagnosed her with POTS and EDS. Then she slowly began getting more tired, unable to complete dance classes ect…. By Mid July this year we noticed she was losing weight and she was losing some hair. She was under some stress so we dismissed it. But by August she had lost 22 pounds and no longer was under stress. After a trip to the Primary he was thinking auto immune so he ran a ANA. Her titer was 1:320 so he thought it was worth investigating and sent her to a Rheumatologist and GI Doc. The Rheumatologist ran another ANA along with other tests. Her titer was 1:1280 at that time. However other tests came back 'within limits'. The GI has also done some test that were within limits. She maintained her weight but it takes us 2800 calories a day to do so. And in the mean time has had urine tests that were abnormal, developed kidney stone, cyst on kidney, multiple cysts on her ovaries, still can't get energy to even go to school, dance ect… She has had 3 GI infections in the last 8 months and the list goes on. Rheumatologist say well some people test positive even at 1280 and have no autoimmune disease. But what else could it be. And even though my Primary is amazing there is only so much they can do. I KNOW there is something wrong with my child if not autoimmune then what?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

jcather | @jcather | Mar 20, 2019

Can you get a second opinion from a different Rheumatologist? Or perhaps Gastroenterologist for the GI infections?

John, Volunteer Mentor | @johnbishop | Mar 20, 2019

Hello @mthurlow, welcome to Connect. I can't begin to imagine how hard it is to find answers to help your daughter. There is another discussion here on Connect that may give your post more visibility to help connect with other members have discussed similar symptoms and may be able to offer some suggestions. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion:

> Groups > About Kids & Teens > Auto Immune Disease(hypothyroid) & Postural Tachycardia Syndrome
-- https://connect.mayoclinic.org/discussion/auto-immune-diseasehypothyroid-postural-tachycardia-syndrome/

While we wait for others to join the conversation, you might like to read this story on Sharing Mayo Clinic:
Learning to Live Well with POTS Brightens Daily Life for Christine Esposito: https://sharing.mayoclinic.org/2016/12/15/learning-to-live-well-with-pots-brightens-daily-life-for-christine-esposito/

Are you able to share what your daughter's biggest concern is?

Lyn | @pearlbaby7 | Mar 20, 2019

@mthurlow Welcome. We aren't doctors but we can share our own experiences and support. Can you get an appointment with an Immunologist rather than a Rheumatologist? There is one in Springfield that has 4.5 stars for reviews. I'd also put her symptoms all together on the internet and search there until you find something. You know something is wrong. Don't quit looking for the answers. Please keep us posted on your progress. We wish you and your daughter all luck.

mthurlow | @mthurlow | Mar 21, 2019

Thanks for the responses. We are getting another opinion from a different hospital in KC. She does already have a GI doctor who tells me that she is just more prone because of a weak immune system. It is just so frustrating to not know where or who to go to. Our primary is amazing but I think he is just as frustrated as us because he knows that it is something as well but can only do so much. I will check the other forums as discussed too. Thanks.