New Drs, I'M Getting Really Baffled!

[k'smom]

Kay's internal medicine doctor decided we should go to Ochsner's Childrens Clinic to see a different neurologist there. So I took her yesterday. He spends about 10 mins talking with us and then asks, "What's POTS?" The first thing that hits me is, we are in the wrong place. He continues to take a full history and checks her out reflexes and responses and then says he wants her to see the ortho for her joints and the cardiologist. On the upside, he immediately got her in to see both.

The ortho checks out her joints and says she has subluxation of her shoulders and right knee. She wants Kay to start physical therapy right away to try and strengthen her muscles and ligaments to help hold her shoulders in sockets before she ends up having to have surgery on them. She's pretty much amazed at the flexability in her shoulders, fingers and knees. We talked about joint hypermobility and she made Kay an appt to see the geneticist next month. So I think overall, the trip was worth it just to get this much done with ortho.

Then we see the ped. cardio. who talks with us for over two hours. He was an extremely nice and considerate person.

He tells me he would advise me not to start her on the Digoxin as it can be very dangerous for her. I'm in agreement after reading so much about it. Then he starts telling me that he's not sure he believes there is a condition such as POTS. He thinks that its just syncope and that most teens grow out of syncope. He asks about her physical activity and we tell him that she used to be very active, but that has decreased because she becomes so uncomfortable when her heart rate gets up and she can barely breathe. He tells me that he thinks she has fell into a pattern of not exercising and that is making her heart rate get too high when she does get out and walk, ect. He did another echocardiogram and EKG, put a 24 holter on her and gave her another 30 day event monitor. He told us to start steadily increasing her activity level and record the events so that he can see what's going on. He went and talked with his colleage and decided that Kay should see an adult cardio there that, as he states, has an extreme interest in Dysautonomias and sees alot of patients with the same symptoms as Kay. So she will see him next month also.

This is where ya'll come in. I thought that letting her heart rate get too high with exercise was bad for her. I guess because when it happens, she blacks out, feels tired and has to end up going to sleep for several hours, not to mention getting so out of breath it gives her chest pain. Am I wrong? Am I actually making her worse by not pushing her? She's not lazy by any means. She loves physical activities, but I thought she should do what her body can tolerate. Please help me out on this.

[lieze]

I like the happy medium.

Doing what a person can in their comfort zone without getting to the blacking out, chest pain stage.

Many have found activity really helps.

I sometimes do my dry runs where I get up heart rate skyrockets, I go sit back down and recover and I do this over and over until finally I can get up and move around and no longer have the reaction.

It is horribly frustrating but it has worked for me.

At first when I would go out to hang clothes it's like I was partially blacking out.

The more I did it I increased my tolerance to where it no longer happened.

Same with getting the mail or hauling the trash up the driveway.

I saw stars all the way back to the house.

I think activity is good my idea is keep her active and try to stop before she gets into those stages of physical exhaustion or collapse.

[E246]

Hi,

Yes, i want to know the same thing.

The last person i saw said to should carry on as normal, whether that be a 10 min walk or a 10 mile walk.

It was clear he knew nothing about POTS. If i could walk for 10 mins i would be elated.

I often now do not get the elevated heart rate but still get terrible chest pains and these control how much i do.

I do not think you decondition that quickly - i just think they do not know.

Last time I saw the the expert on POTS she told me a story about a woman who had to pick her kids up and the hill at school was really steep so she discussed with a cardio whether it harmed the heart to beat fast. They decided between them - no -Just this story itself indicted they do not know. I think if you have pain you stop.

It is my big question again when i see the specialist on monday and i will let you know.

Best wishes

[Sarah4444]

Before you start physio, take a look at the Ehlers Danlos site - ednf.org. You want to make sure they know what to do with EDS patients. Are you anywhere near Baltimore? I saw a great connective tissue doctor there, Dr. Clair Francomano, who is very aware of the association between hypermobility and POTS.

When it comes to exercise, no matter how hard I tried I couldn't handle physical activity until I started treating my POTS and mast cell disorder. I have gone from barely being able to manage two swim 2 minutes a day last summer, to now being able to swim 20 min a day. The autonomic physician I saw this week explained that we don't get POTS due to inactivity/laziness, but after we get sick, being immobile can make us worse. I think the point is to try to get us well enough to be able to manage a bit of exercise. There are some things you just can't push through.

[sue1234]

Please PM who the cardio "with an extreme interest in dysautonomia" is!! I live in LA and have not had much luck around. Lovebug sees someone over on the east side of LA, I think around Mandeville. But, just curious who at Ochsner is interested.

[k'smom]

Sue-pm sent-will send another tomorrow.

Sarah-I did check out the EDS site. Actually, the ortho did her research in front of me yesterday on the same site. She just wants to start with some simple exercises and see how it goes. I'm in Mississippi. It seems like all dysauto specialists are in the north.

Emma- Yes, please post what your specialist has to say!

Lieze-That's pretty much what we've been shooting for- a happy medium. Some days she can tolerate more walking, like a small amount of time in the store, some days she can't and has to sit in the car while I try to hurry through. I know alot of people here can't tolerate getting their head off the pillow, so we are thankful for what she can do.

Thanks to all for your input. One of her drs had previouly told me that if we can't get her heart rate under control, the next thing will be a pacemaker. He's a good dr, but not cardio, so IDK about it, but I don't want her to have to endure that if its not absolutely necessary. That's why I assumed we shouldn't push too much.

[sugartwin]

If she does indeed have EDS, which is seeming more and more likely given her age, her extreme flexibility and her dysautonomia, she will not grow out of it most likely. Her system has a defect (as yet unknown and unspecified) so what might work for a 'normal' person (getting back into shape or simply 'growing out of it') won't work for her. Not that there is no benefit to staying active as possible, but in my opinion, exercise will not cure her. I'm happy that you are on the road to seeing a geneticist early.

[k'smom]

Hi sugartwin,

We've only come as far as we have, because of advice given to me here. If I had not been told the extra questions to ask and test to request, we still wouldn't even know she has POTS. Two different ladies here have told me to ask about EDS several times, and because of that, she's getting to see the geneticist. I'm not being negative, believe me, but I don't feel like she's going to go out of all this. Matter of fact, it really kinda makes me mad for some uninformed drs to assure her of that fact, when they don't know that. It also ticks me off when they tell her, well it's just syncope, its not all that bad. Maybe not to him, but it sure seems like it to her. One of them actually told her the other, I'm going to get you to the point of being able to get your driver's license, I promise. After she's repeatedly been told by everyone of them that she can't drive because of this.

Ok, I didn't mean to get off on a rant. I value all of the info I receive here, so thank you very much.

[firewatcher]

My HR goes high very quickly with exercise. I recently asked my GP to get Dr. Levine's exercise protocol for me to try, thinking that it might help...or maybe I've just been exercising wrong all these years. After he read the fulltext article from Dr. Levine's exercise study he totally nixed my involvement. He gave me a rather firm "as your physician, I can't recommend you do this." He said that my ANS test results don't look anything like the study participants and that it would probably make me worse instead of better. My doc at Vandy told me to exercise to the point that I was not deconditioned, but warned me that it can be too much of a good thing and not push it. I see a physical therapist for my weekly exercise (I can only handle once a week) and she uses my recovery time and fatigue as a gauge to how hard I should work. Honestly, it hurts just as bad now as it did when I started two years ago, but I am able to go without compression hose most days.

[k'smom]

Firewatcher,

Thanks for your sharing your experience with me.

[comfortzone]

Just wishing you well and tons of hope .... as a peds nurse forever kids and teens change... nothing stays the same --- and just when you think you have it figured out - yep - things change again....

Same with EDS... A geneticist - hopefully will be one familiar with heritable disorders of connective tissue - EDS and the other groups as well. And the subgroups of EDS too. For a warm friendly knowledgeable geneticist who works with adults and children - I second Dr. Francomano. She's got a big heart and is very thorough in her measured exams. Another super nice guy is Dr. Brad Tinkle in Cincinnati - His book 'The Hypermobility Handbook' - is a pretty awesome collection of info - some young folks have reviewed it quite well too.

Sure you cannot cure a connective tissue disorder - but with the varying and shifting symptoms in a day or week or month of an adult with EDS/dysautonomia stuff.....figure that and maybe more with a child/teen/younger adult... things just change. Hormones, growth, nutrition, emotional states, physical abilities and limitations.... it's a big ball of wax....

That's where experts like Dr. Brad or Dr. Francomano can be worth the travel to see -- they BELIEVE Pots exists - they believe you have a defect in your connective tissue that causes your ills -- not being overweight or a teen or the bazillion other things uninformed docs will use as 'fluff' translating to and "I don't Know"

The fact that a person can touch their thumb forward to touch their inner wrist easily --- is abnormal. It's normally so painful a maneuver that police use it as a 'behaviour control' technique if you will -- see... it's the connective tissue that's truly not the same d/t the disorder.....

But dysautonomia even with EDS - no matter the trigger or the cause -- I believe anyway -- allows tons of room for hope for feeling better once your care is managed by a knowledgeable compassionate clinician group. Sometimes it's several different disciplines or a 'team' -- that gets you through the rough spots.

It sounds to me like you are really on the ball and I wish you luck gathering your info and your team. I personally believe I would be light years better in health had I had these things like EDS and dysautonomia dx'd in my youth. Learning from the EDNF page that has "handouts" from last years conference can teach you a lot - as lectures from our nations best - are presented. The younger you are to know these things gives you a chance to build good life long habits under a doctors and physical therapists care - to tone muscles to protect joints. Good nutrition to maintain optimal weight.

Blessings!