kjmom

Very nice words of encouragement! Thanks!

Kayla, 10

I'm planning on seeing it soon! It sounds like a good movie. I'm really in to superhero movies. X-men, spiderman, etc. mostly marvel.

Kayla, 10

Hi!

I'm new also. I'm a kid and share this account with my mom. Having dysautonomia isn't great:(. It's kinda frustrating that no other people know about it. At least there's other people who have it.

Kayla

I'm sorry you had such a bad experience. Docs and hospitals always try to give Protonix for some reason but I never thought it worked as well as Prisolec or Nexium. Have you tried either one or are those contraindicated as well? Maybe you need to get an endoscopy to see what's going on in the stomach?

Swimming is the only exercise my daughter does. When she's in the pool, she feels like her old self again. The buoyancy counteracts gravity and blood pooling as well as regulating her temp. It was one of the things that helped us diagnose her with POTS!

My daughter was diagnosed by a connective tissue specialist after I realized she had many of the symptoms. She has EDS, hypermobility type, which is characterized by very bendable joints, velvety skin, GI issues, dental problems, easy bruising and POTS. Google "Ehlers-Danlos symptoms" and see if you fit the criteria.

That is one symptom of EDS, which many folks with POTS also have. Do you have any other EDS symptoms? Have you been evaluated?

For the past several weeks, my daughter has been REALLY struggling with anxiety. It's gotten to where she is basically couch/bedridden due to her anxiety in addition to her physical POTS symptoms. She is mostly anxious about her GI symptoms getting worse if she does anything, even having the teacher to our house for an hour (which she always loved before). She tried beta blockers, which seemed to help lower her heart rate, but it did nothing for her anxiety. She increased the Florinef to .2 mg several weeks ago, which coincided with the dramatic increase in worry. Her doctor said that Florinef typically doesn't have this side effect, but I was wondering if anyone else had a similar experience.

Pam, My daughter started her symptoms suddenly in Dec after a virus. However, after she was diagnosed with POTS, I realized that she had many EDS hyper mobility type symptoms so I got her evaluated and sure enough, she has that too. The anxiety has dramatically increased over the past several weeks though. Her GI symptoms have been bad from the beginning but get worse with her anxiety (although I don't know which comes first).

That's so great that they got to meet! I'll have to show my Kayla. Sometimes I think she feels like the only kid with this illness.

My daughter is really struggling with anxiety too. She worries all of the time about feeling worse physically if she has any plans (even at home). She started beta blockers last week and it's helped her tachycardia but not the anxiety. We've tried relaxation techniques, cognitive coping techniques, distraction...nothng works. We are at our wits end.

Thanks for the explanation! How do they test for mast cell issues?

Forgive my ignorance but which drugs are H1 and H2 blockers? She's already on Zyrtec and Singulair for asthma/allergies but it doesn't seem to be helping the hives. I haven't taken her to an allergist (too many doctors' appts!) but maybe we will.

My daughter gets these spots on her that almost look like bug bites but I don't think they are. A few months ago while laying on the couch (with me sitting next to her), these intensely itchy red welts started appearing throughout the day all over her body. I showed them to her ped, who said they looked like spider bites. But I've never known a spider to bite all over the torso then crawl under her elastic waistband and bite legs. I didn't have any either. They went away and now it's happening again...she has about a dozen or more all over her body. Maybe hives?

Does anyone else with POTS and EDS experience this?

Wow, this is really interesting to me, considering that I have MS and my daughter has dysautonomia. I don't know what it all means though...

My daughter's primary symptom of POTS is GI-related (nausea, stomach pain). She has normal gastric emptying and every other GI test has come back negative. It's possible that it could be from more blood pooling in the GI system or an autonomic overreaction. She is now on Florinef but it's not helping her GI symptoms so the doc is starting her on Mestinon tomorrow. Will let you know if it helps.

Thank you, Fiona. Can I ask what you take for your GI issues? Those are my daughter's main problems and we haven't figured out anything that gives her long-term relief yet. I guess it's possible that her GI issues are from EDS but since she doesn't have the diagnosis yet (we don't see the doc until August!) we aren't treating that aspect.

My daughter's been on .1 mg of Florinef for a few weeks and it gave her a bit more energy and appetite. The doc just had her double the dosage to see if it helps more. She hasn't experienced any adverse side effects besides low potassium but she couldn't tolerate the potassium supplements so we are just watching what she eats.

My daughter's POTS was diagnosed because of her stomach issues too. She has constant stomach pain with intermittent nausea, diarrhea, stomach cramps and lack of appetite. The Florinef has helped the appetite somewhat but the pain is still bad. She takes Levsin when the cramps come and Zofran for nausea, but it makes her constipated. Haven't found anything to help the pain yet except for swimming, which temporarily relieves all of her symptoms. Have you tried a pool?

Boy, that sounds horrible! It shouldn't have to be that bad. BTW, my daughter with POTS is named Kayla too! She has major stomach issues but her gastric emptying study was normal. We still haven't found something that helps her yet. I hear erithromycin is the go-to drug for delayed emptying. Hope it helps!

Thanks!

Another question: do you have family members with EDS? We don't seem to have a family history but I've read it's genetic.

After reading about EDS, I talked with my daughter's doctor today about the possibility that she has it. I knew nothing about it before, but she seems to meet the criteria for most of the hypermobile type: super flexible fingers and elbows, GI problems, velvety, translucent skin that shows red spider veins on her cheeks, dental problems, high palate and spondylolisthesis. I've never realized that all of these seemingly diverse symptoms go together. He wants her to be evaluated at the children's hospital metabolic disorders clinic.

So my questions are:

Which diagnosis came first for you, EDS or POTS?

What were your EDS symptoms?

Who diagnosed you?

Is there any particular treatment?

Thanks!

Swimming has been the best and only relief my DD gets almost complete relief. Once she is submerged in the pool, it counteracts gravity and blood pooling so she starts to act like herself again. It also keeps these patients cool so you don't get overheated while working out.

If it is a blood flow issue, how do they treat that?

Oh thanks, Christy! I definitely will.