Mayo Story Of Someone "overcoming" Pots

[sue1234]

I will start this post by saying that I am genuinely glad for this boy that was wheel-chair bound with POTS and now able to go back to his life. I really am! I know all of us hope that we could do this too. Here's the story, along with a video of his mom and a video of him talking about his experience:

http://sharing.mayoclinic.org/2012/03/19/from-bundled-up-in-wheelchair-to-rock-climbing-in-3-weeks/

Now here's the "but". This really makes me believe that doctors really need to be diagnosing us, not by POTS in general, but by a possible basis. This program, as we can see it does work, seems to emphasize a change in behavior, attitude, something. I just don't understand all this. Why would something like this work for some, but not others?

The mother's talk mentions his history since birth of probably what is EDS, as she mentioned joint and tendon issues. But, he was extremely active all his life, so probably no lifelong POTS, then sudden onset. Which doesn't sound like his POTS is EDS-caused. So, was he probably a virus person? If so, why would a 3-week behavior clinic help? He went from wheelchair bound to next week he's going back to school AND back to swim meets. Can someone really get fully functional after 3 weeks?

This is what has me baffled. What am I missing?

[HopeSprings]

I'm thinking viral too - maybe he would have improved after 3 weeks with no rehab at all. Maybe they put him on medication which helped - I don't think they said. Hard to believe this illness can be cured in 3 weeks. If it can... sign me up.

[sue1234]

Well, I'm thinking since he had it since last September with no improvement whatsoever, something in that 3 week rehab is what fixed him. Not once do they mention getting on a med regimine (?), just all of the group activities. But, the mother talks ALOT about the parenting style, as if that was a contributor of why he wasn't getting better. I'm not sure how to take that and what that means.

[Christy_D]

This is the program my son went through, I posted about a couple of months ago(Parents of teens with POTS). All the kids that went through it with my son are doing better except for my son and another girl, both with GI issues and another girl with major fainting issues. It is a great program, but it doesn't work for everyone. I would have him go through it again, even though it wasn't a big help to him. He bonded with those kids.

It does focus on ignoring and not displaying your symptoms. They also made the parents be trained on how to deal with a sick child. I don't agree with the program about punishing your child when they don't go to school,etc..The nausea is too severe.

The program doesn't cure, it teaches you to live with your illness and make the most of your life.

[sue1234]

Thanks, Christy, for weighing in on this. It's good to hear from someone who's been through it.

[Christy_D]

I will also say, he did okay when he first left the Mayo,but they had changed his medications and he crashed. He never got back to the level of functionality that he had when he left the Mayo PRC. So, we learned don't mess with the med's when things are running smoothly!

[jenglynn]

This is a perfect example of why more time and research needs to go into sub-setting and categorizing those of with these conditions. Whenever I would mention to my doctors at that facility anything about POTS they would always correct me and say that: "You don't really have POTS, you have autoimmune mediated autonomic failure/dysfunction. But I still have POTS because I have the syndrome but it is caused from that. At least I think so, or am I wrong????? I have always questioned that... and wondered by have never been given an answer. Mayby one of you far more educated than I am on this can tell me... if I have autoimmune autonomic failure (which is what they called it) but when I look it up online it always says dysfunction so I have no idea if it is really "failure" or "dysfunction"- I guess either way it means the same- it doesn't work..... Can I STILL have POTS?I think the doctor at the major facility said I have all of those symptoms because of my principle diagnosis... so maybe he was not really saying I don't HAVE POTS, but that it is caused by the other. I don't know, it has confused me and I never know what to tell people when they ask what is your "MAIN" diagnosis. Because my home hospital where all my medical records are list both on my diagnosis list. Anyway, because mine is autoimmune mediated that course of treatment would most likely not work for me. The differences between low flow, high flow, hyper, hypo, and all of the other differences that I am not going to pretend to understand but I know there are many. But it seems like we are all different shapes that they are trying to fit into a round hole- sqaures, triangles, hexagons ovals, etc.. are not going to fit in the round hole. Only the round one.

That said, I am very happy for this kid and his family and they both seemed so pleased and happy with their experience there. I was pretty impressed by the Mayo Machine. It is quite amazing the way everything works there. I think it is great that he arrives in a wheelchair and left after climbing a rock wall and now flies home and starts back to school and swimming next week. That IS a miracle. Nothing makes me happier than to hear a story like that. He seemed like just a really good kid, too, from the video and I bet he has a great future ahead of him and I really hope that this cure stays a cure and pray for no relapses for him!!!!

I wish my stay would have ended that way...I arrived the same way, bundled up in blankets in my wheelchair and left the same way I will be arriving again on Wednesday the same way for the follow up. Maybe I will lucky and a miracle will happen during my follow up and I will get cured and get to walk out too!!!!! Miracles happen every day, that kid is proof of it!!!

[Christy_D]

These kids aren't being cured, they are just taught to ignore and make the best of it. They are taught breathing and distraction techniques. The first thing they tell you there is they aren't curing you. The kids that came in with Pain issues seemed to do the best. The are taught to not show any signs of pain or illness, appear to be fine. But, it is a cookie cutter plan, and it just doesn't work for everyone. I did see first hand the success stories and it was very exciting.

Four of the kids from the program, from 4 different states came to our house over the Christmas holidays for a little reunion. They were all doing well, except for my son of course. But, I do think my son may have other issues that haven't been addressed yet which might be playing a role in his feeling so bad. We see a mast cell specialist in two weeks.

FYI-they have an adult program as well.

[martiz]

I will also say, he did okay when he first left the Mayo,but they had changed his medications and he crashed. He never got back to the level of functionality that he had when he left the Mayo PRC. So, we learned don't mess with the med's when things are running smoothly!

This is an important point. It reminds me of cancer - patients are not considered cancer-free until 7 years have passed of no re-occurrence. Claiming that he is cured as he leaves Mayo seems premature.

Having been through several cycles of remission and relapse, I would remain cautious about claiming myself to be free of the disorder. And while I would attempt to live life at it's fullest, I would be ever mindful of creating a situation where I could relapse. Yes, that would mean I would not participate in some activities so I would not be living life to the fullest compared to other people but could certainly live MY life to the fullest within MY parameters.

For example, during a remission, my son and I bought a catamaran and learned how to sail. It was great fun and those are great memories but I would not attempt to do so if I were in a remission again. The heat, the amount of time spent upright, the dangers of being in the ocean if I had an episode, etc. I would choose other activities that would not trigger a relapse.

This seems especially true for viral onset as viruses do not go away, they can be reactivated with the proper triggers.

Having said all of that - I also agree that miracles can happen. The body is an amazing thing.

[jenglynn]

Oh, very interesting. Thanks for clarifying. Some of their symptoms are better, but it is also a mind over matter thing? Behavior modification. I was wondering when the mother was discussing having to change her parenting style what that had to do with it. If my husband did that to me, I would probably throw something at him, LOL... if I am feeling horrible, and he tries to tell me I am not.

It is interesting that they have an adult program. I was inpatient there for more than 2 weeks and that was never even presented as an option. So is it only offered to certain types of POTS patients then? My primary care team was neurology and autonomics and no one suggested it at all.

I am sorry to hear that it didn't help your son. If you don't mind my asking, what did the doctors give as a reason for it not being as successful for him and others? Severity of his illness or the type of autonomic issues he has? I am sure that must have been very discouraging for both of you to go through all that work, and I am sure you both had so much hope as you watched other kids improve. I am so sorry. And so very sorry that your son has to suffer with this illness. It is bad enough at 38, but he should not have the burden of this in his teens. And for you to watch him suffer, as a mother, is devastating I am sure. Hugs to both of you

Jen

[Christy_D]

Jen,

When I contacted the PRC for help , they just stuck to their talking points..do the breathing, punish him for not going to school, etc...So, they just weren't willing to admit/accept that it doesn't help everyone. They insist I take him to school, even if he is throwing up from severe nausea. Which, of course, the school won't take him if he is throwing up. I didn't agree with a lot of the parenting portion. I won't punish him when he is so sick he can't attend school. They listed 5 reasons a child can't attend school and anything other than those five , they should be in school.

One reason was a temperature of over 102..reasonable. So I asked, what if his temperature is 94 and he can't even lift his head off the pillow..They insist he still go to school. So, some of their expectations are unreasonable. But, I still think it helped him mentally and taught him a lot of coping techniques.

HIs local psychologist said the Mayo uses a sink or swim theory, which she (the psychologist) does not subscribe to. She says it sets many people up for failure.

[jenglynn]

Christy,

As a mom that does seem incredibly harsh. Punish him for being sick. This isn't something "in his head" he is physically ill. Like I said, I would not respond to that treatment, and if they were to try to "train" my husband or any caregiver to treat me that way, it would NOT go over very well. I would think he emerged feeling emotionally worse rather than better. :mellow: From what I witnessed, they didn't adopt those same ideals to the adults patients with POTS. Have you found treatment for his elsewhere? I guess I am just making an assumption that you no longer go there?

Jen

[hholmes13]

Interesting story, and I'm glad he's doing better. I agree that punishing someone for being ill doesn't make much sense. I try to limit how much I let this illness interfere with my plans/life, but some days I know if I go to work I'm setting myself up to feel horrible for a lot longer than if I just stay home and rest. I do agree that's it's good to make the most of what we can do. When I'm feeling bad, I try to limit how much time I lay down so I don't become too deconditioned.

Jen, are you coming to Mayo in Rochester? That's where I live/work. Maybe I'll run into you if that's where you're going.

[sue1234]

I think in the fact that it works for some and not others speaks volumes. It does go to show that there are varying causes. Obviously when we think of some of the more heavy weight causes, such as autoantibodies, changing your mindset won't help that. I really wish different institutions would look at the various areas that could cause POTS. For instance, Stewart works with kids and has shown that some of his POTS kids have low ferritin, and it doesn't show up as outright anemia. Fixing their ferritin levels helped them (iron helps vasoconstrict vessels, so anemia leads to vasodilation). So, if a patient presents as a kid, one of the first things maybe is check ferritin levels, if odd, use Stewart's technique. If not, them look at the next cause. I think some of these places get so caught up in if you fit one criteria of theirs, then they'll go all out to help. But, if you don't, then they don't want to check into other causes. And that is just my thought!

[Christy_D]

Jen,

We have a local specialist that sent us to the Mayo to see if he was missing something and because my son has gotten so deconditioned, so no we are no longer going to the Mayo. But, with the POTS label I don't think they looked to hard for anything else. So, I pursued the mast cell issue on my own by emailing a doctor and asking his opinion. The mast cell doctor agreed it should be checked out. So, now we wait for that appt.

Christy

[POTLUCK]

I went to Mayo Neuro- Rochester ( not POTS clinic) and within 5 minutes they had not figured out what was wrong with me, and when I left they had not figured out what was wrong with me.

That being said the Mayo- Rochester adult program for POTS does seem to have a lot of strengths from what I found out.

jenglynn I agree with you, and in addition I think that if your HR changes by 30 points from lying to standing or is above 120 standing and there is not a clear diagnosis otherwise, then you have POTS by definition. I think that everyone on this site has a reason for it. Pots is a definition ( somewhat arbitrary ) and not an etiology. And I strongly agree with you that they need to be looking into etiology for everyone.

I am very glad this program helped this child. Much like Dr. Levine's controversial ideas on exercise, it seems clear that lack of exercise is not normally the etiology for POTS but may often help. The analogy that comes to my mind is physical therapy for a fracture and forcing yourself to use it more. This may often be beneficial, but it seems like it might need to be considered if it is always the right thing to push someone to walk on their fractured leg.

[issie]

This may often be beneficial, but it seems like it might need to be considered if it is always the right thing to push someone to walk on their fractured leg.

LOL yeah, when the oweee is so extreme you want to stay off of it. That being said, having recently recovered from a tri malleolar break (broke my foot off my leg) you have to eventually walk on it and it hurts - probably for the rest of your life. But, the effort is worth the pain. So, we do have to try to push ourselves (however, so slightly) with POTS too. If we just sit down and give up - we won't ever get better. Even a few seconds of effort could be a huge improvement over time.

Issie

[roxie]

Punishing does sound a little harsh.

It is important to push yourself but it's a fine line, sometimes our bodies need rest

It's amazing that it works for some but we shouldn't be made to feel bad or like we aren't trying enough just because we aren't cookie cutter.

[issie]

You know after watching this video - to me, it doesn't at all sound like he's "cured". He was just given the tools he needed to emotionally cope with what he has - like was brought out earlier. They also have a support group that encourages them of their peers going through the same things. They also were in a clinical setting for 40 hours for 3 weeks that helped them to learn how to manage with autonomic dysfunctions and to have a sort of rehab from being so debilitated. (I wonder how much success there is in adults - that don't have the drive that younger people do.)

In a way, I think this forum is sort of like a support group - in that we all encourage each other to keep pushing, to hang in there, to look for alternative ways of living our life and to keep going and not give up. Maybe, learning some of the coping skills would be beneficial to all of us. But, it won't take away what we have.

The way to go on any journey is with the first step. However, small that baby step may be - we can improve and we can have more quality of life. I think what this example is showing - it's getting our minds around it and then learning how to deal with it. (That's just my take on it Just sort of what I got out of it.)

Issie

[roxie]

You're right issie. After that article I clicked the tags at the bottom that said "pots" and saw an article w/video about a girl who says running helped her. In the comments someone said the same thing- that if you listen to what she's saying she is not cured.

And something I really wonder about in relationship to teen & adult POTS...they say it can be grown out of. Do you stay grown out of it forever? Because if you read this forum a lot of "older" talk about having problems as a teen or all their life not knowing what it was, some of you guys were functional for a while, some had symptoms...but a lot of you talk about it coming back later in life. I wonder if there's any studies about that. I'm guessing not because POtS/OI haven't been researched long enough to truly follow someone lifelong.

[Dizzysillyak]

It sounds cruel to me to put parents in a position of pushing their kids when they're sick. Unless, mayo has a

clear cut way for these parents to determine if pushing is the right answer at the time.

I definitely look at this board as a support group. No one understands us better than we do .. Thanks ..d

[jangle]

Well shoot, I don't really consider that overcoming POTS.

For the past 6 years I didn't know I had POTS I basically just pushed through it and went through college.

Treating POTS isn't as simple as trying to put a rug over it.

Edited March 20, 2012 by MomtoGiuliana

[issie]

Oh Jangle,What a visual - I just had. (People what was so visual - got deleted from Jangle - so now my comment makes no sense.)

Issie

Edited this post - wasn't the right place to put all that.

[HopeSprings]

Mayo recommends punishing POTS children for not going to school? I have tried calmly for several minutes now to think of the next sentence I want to write, but can't think of one that doesn't include profanity. !!!!!

[jangle]

Mayo recommends punishing POTS children for not going to school? I have tried calmly for several minutes now to think of the next sentence I want to write, but can't think of one that doesn't include profanity. !!!!!

Naomi I too tried not to use profanity, but this ideology really makes me mad.

I mean I'm glad if they have a program that alleviates the symptoms, not a program that teaches them to do the stiff upper lip, because I don't need to tell you POTS will win that fight.

It just seems like they're treating them like kids with emotional issues who invent their symptoms in their minds.