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Mayo Story Of Someone "overcoming" Pots


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Well, you can imagine the parent meetings when we were told how to parent our children. I have never punished him for not making it to school, which incidentally he only made it 2.5 days after returning from the Mayo. I cannot punish a child who has lost so much of his life. He was a year round soccer player and played select baseball as well, he has already been punished enough by this illness. There were many negatives that I didn't like about the parent portion of the program, but teaching the kids to make the best of their situation and teaching them techniques and giving them tools was well worth it. These were all kids who weren't attending school and most of them are now, even if only for partial days, so they got part of their social lives back. I decided to listen to what they had to say, parenting wise, and chose what would work once we got home. I did not make waves, they did not like waves!

I do know the one distinguishing factor between my son and the other kids was, he did not get POTS after having a virus like all of the kids he was hanging out with did. His was a gradual increase in symptoms and severity starting at age 10 and becoming debilitating at 13 after a large growth spurt. He was also sick much longer than the other kids. Some had only had it for a couple of months, got diagnosed and sent straight to the PRC. So, I think it might be more helpful for milder POTS, while his is severe.

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What kind of coping techniques did they teach?

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I wasn't in on what he was being taught, but I know they did breathing, and distraction. Then they did things like goal setting. Like the goal wasn't to make it to school all day, just hour by hour. Example- I will make it until 9 am, at 9 change the goal to 10. Smaller goals are easier to accomplish and before they knew it, the day is over. They were in class and PT and OT from 8 to 5 for 3 weeks. So there was a lot of training and practice going on, plus biofeedback.

Plus, being surrounded by other sick kids they could all encourage each other and know what each person was going through. There was empathy there. It doesn't always translate completely into the real world. In the real world, the other kids make fun of some one who throws up frequently.

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Puppylove, I understand what you are saying. POTS is actually measurable!! They don't need to look at us and try and decide if we're faking it or not. On a TTT, we prove what is happening with our body and no magical thinking will stop it.

I think it is safe to say that most normal people don't have a walking upright (or standing) heart rate much above some normal number. How come we can have upright numbers racing from 120s - 150s or more, and that doesn't legitimize what's happening? I would say that we probably have the extremes of upright heart rates compared to the average population. They don't look at someone with an extreme body temperature of like 105F and tell them to just go live your life and work through the fever. The physical problem needs to be addressed. Well, same with us.

I'm thinking that some of them must be what Christy said, POTS of a short duration and most likely related to a virus.

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Issie,

No, the doctor only remarked that his elbows are overly flexible. But hypermobility runs in the family. My nephew is a little contortionist. I wonder if somewhat hypermobile could play a role? My mother, daughter, sister, niece, and nephew are all hypermobile. But none have had a doctor look into EDS.

Christy

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Christy,

That's definite signs of EDS III and I was a lot worse when I was about his age too. You can PM me if you want. I've also got MCAD. Seems that the three things go together - in fact there are studies about it.

Issie

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I think that what bothers me the most about this is that these parents are not INSIDE their child's body so they can't truly know how they are feeling. So, forcing them to go school when they say aren't feeling well for whatever symptom they may have, seems not only counterproductive (meaning they will feel worse the next day most likely due to overexertion) but cruel and a little heartless. I get the point that we have to push ourselves as much as we can- but that is the key- OURSELVES. As another person, how can you know how hard to push someone when you can't feel when they just can't do anymore.

I feel that pushing these kids is more the job of a PT, OT, etc, not so much the job of a parent. We, as adults who suffer from this illness, know how some days we feel a little yucky but we know that we need to get up and do what we can (I am actually speaking for others, not me, because I can't get up at all, but I do push myself quite a bit on my bed exercises and recumbent bike) but how would you respond to someone you LOVE pushing you to that extreme. I would think that could leave to anxiety, depression, and resentment. One of the issues so many people with POTS suffer with is getting their family and loved ones to understand and support them. Pushing and punishment seems harsh and just not acceptable. Would we do that to a diabetic child? I am sorry, the whole program just doesn't make me feel comfortable. The mom is in the video had to make a drastic parenting change in order to meet the needs of the program. I really pray that it works for the them and it isn't something she comes to regret.

I still think that it is odd that the adult form of this was never mentioned to me at all in the two weeks I was there. Perhaps, because my primary diagnosis is because of autoimmune autonomic failure then perhaps it would not work for me anyway.

Christy, do you think your son suffered in any way emotionally due to this or did you? I imagine that it was so hard for him to be one of the kids who did not improve. I am just sorry that you both had to go through something like that. I can't comprehend the thought of punishing one of my children for being ill- especially an illness such as ours that is so hard to understand and without any clear answers at all to rely on. A positive attitude and a strong will are wonderful assets and definitely a necessity with our disease but it is not going to cure anyone. I also know that being criticized and belittled by the people who are supposed to love you more than anyone, unconditionally, is not my first choice as a motivational tool. Maybe I am missing something but something about this just really bothers me and actually hurts my heart.

Jennifer

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Jennifer,

My son loved the program, he did not want to come home! He loved being with the kids who were like him. His only remaining friend doesn't get his illness and sometimes questions whether he is sick at all. So, no my son did not suffer emotionally, but I never carried out the punishing part. I tried to get him to go to school and encourage him, but ultimately I made it his decision whether he was able to make it or not. Like you said, I don't know how he was feeling. Plus, I am not sending him to school when he is so nauseated he throws up just moving.

Most of the parents there were like minded, and punishing was not going to fly. But, one mom..who we nicknamed the PRC Nazi, was doing everything she was instructed. She seemed to enjoy taking her son's cell phone away as punishment. We all felt sorry for that boy, but he was a strong kid, somewhat overbearing so he didn't seem too effected by it. I think the parent meetings were probably more emotional than what the kids were put through.

Christy

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Christy,

I never thought about the positive aspect about him getting to spend time with kids who can relate. As an adult, I would LOVE to have that chance. This forum is so helpful for that reason. I am glad he wasn't negatively affected, but the opposite, and of course you recognized the ridiculousness of using discipline in response to a disease as if he is doing something WRONG. Ugh. Just thinking of myself, and what I have been through physically, emotionally, mentally my whole life as I've struggled with this, but especially in this last year: all the testing, labs, hospitalizations, pain, concussions, adrenal surging which triggers mood changes and emotional thoughts, uncertainty as I went through the diagnosis process.... I could go on and on but will spare you... but when I think about this last year at 37 years old- the thought of being disciplined and punished for not feeling well enough to go to school seems not only mean but a waste of time. Isn't he being punished ENOUGH? Look at how much he is missing out on? I am sure NO ONE wants his life back more than he does. I think this disease does a good enough job on its own of punishing us. It doesn't need any help.

I am so glad to hear most of the parents were in agreement. Did they actually use words such as "punishment" or "discipline" and give suggestions on possible consequences? I am sorry to keep going on about this but it makes me sad and angry to think of children going through this... especially after going through it myself and having so many days (most days unfortunately) where I could no way get out of bed and climb rock walls as I could fly to the moon. To have someone come and reprimand me on top of everything else would most likely just make me, especially as a teen, feel resentful and horribly uncared for.

I do understand that this MUST work for certain kids/adults or the program wouldn't exisit...which is why I say AGAIN... the focus has GOT to change on categorizing us better and realizing that we are NOT a one size fits all unit. There are SO many subsets and this not only leads to incorrect treatments, diagnosis, uneducated or misinformed doctors, the list is endless.

I could go on and on and usually do :D but will stop at saying that I am glad you have better treatments on the horizon, Christy and I am happy that your son did at least benefit socially from the program. Again, I pray for the boy and in family in the video and while I am with most of you that he is not "cured" I certainly hope that his improvement lasts and the family manages and navigates through the rest of the journey successfully. They both seemed so happy.

Jen

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I actually stopped watching the first video once she got to the part about the parenting style. This makes it sound as if the whole problem is behavioral, and the kids are just acting out. I also felt sorry for the boy because he thinks he is cured (and I hope he is!), but 3 weeks of improvement and one week without flares is not really a good indication of things to come. I have to wonder how he is doing now....

I had a sort of placebo effect at one point in time, where I ignored all of my symptoms because I wanted desperately to believe that I had found a cure. Of course it didn't last for long because my symptoms were too hard to ignore. I would love to see the long term improvement rates with this program.

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I read something from Mayo recently that suggested that child POTs patients should be made to keep attending all of their live's obligations because in POTS its just the signals that are incorrectly being received by the brain that is the problem - as if indirectly there are no actual abnormalities. This is from the same research group that published work suggesting 25% of POTS patients have an autoimmune etiology that is similar to Myasthenia gravis. Do they force m.gravis child patients to continue going to school and playing sport?

I must say the only good thing about getting POTS at 26 is that I wasnt a kid being forced to attend school by well-meaning parents being told opinion dressed as fact. I would hope that most parents would listen to their child over a doctor opinion like that.

There have been times where being upright is torture.

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This reminds me personally of after I had my daughter and was in the hospital and having very intense POTS symptoms and the nurse forcing me out of a sitting position, and forcing me to remain standing, and sticking smelling salts in my nose and telling me nothing was wrong with me. (I wasn't diagnosed at the time and I myself started duobting whether my problem was physical or emotional--like somehow I was causing myself to feel the severe fatigue etc.!)

I guess I can see how this approach might work with certain personalities and certain levels of severity of POTS. For example, I can see how someone might be motivated by a tough love sort of approach if their POTS is not terribly severe, to push harder, especially if what is holding them back is fear more than anything else. But certainly this cannot be right for everyone at every "stage" of POTS.

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Honestly, when we left the program with my son, he could have done that video. We thought everything had turned around and he was going to be able to 'cope' much better. He did great in the program, one of the best actually. We were so excited, then he crashed! So, I too wonder how that boy is doing. When we were in the program, they didn't make any false claims that everyone who leaves there has no problems.

He does skype and text the friends he made at the Mayo, and most of them are coping much better and are still in school. So, the program is a success for many of them. Success meaning the kids are not at home in bed, but out functioning to some degree in school and socially.

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I think what's annoying is the title "From Wheelchair to Rock Climbing in 3 Weeks!" Sounds like a headline from a tabloid newspaper or a bad infomercial. And I wouldn't suggest any POTS person climb a darn rock unless they are well out of this condition.

Christy - it's amazing all you have done and are doing for your son. I think pursuing answers for a child would be even harder and more frustrating than being an adult patient. I hope some answers will come for you guys.

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I think it is the behavior modification aspect that just gets to me the most. Are we suggesting that these kids are acting out and should just train their brains to ignore REAL symptoms so that they can convince themselves they are better. I wonder at what age this facility stops using this philosophy- 18? 21? I would have been so livid had I arrived there for help as severely sick as I was- only to be told that I needed to do A, B and C and have a major attitude adjustment that someone would oversee- and I would be much more able to cope. I never had any of the neurologists make ANY such suggestions to me. In fact, it was the exact opposite because I had been through so much just trying to get well- they actually showed compassion and said that this was not a mental problem- it is a physical problem- and no amount of "trying" is going to take it away.

I guess the positive thing for ME when I was a teen suffering from POTS but didn't know what it was- because doctors didn't- is that I never had to endure anything like that. I had plenty of doctors tell me it was in my head but I don't recall any telling my parents to punish me for it. When I would get multiple syncope, dizziness, tachycardia I would dread going to a doctor- and it was always a new one because the previous one had basically called me a loon. I always got the speech- "Some people just faint" or "You have to stop standing up so fast.." None of these doctors could tell me WHY I had 3 cases of chicken pox either, or WHY my body NEVER runs a fever no matter how the severe the infection is. I once had strep throat, very sore throat, no fever of course because I don't get them, so I went on with life. A week later I felt better. 4 weeks later I was in intensive care with acute glomular nephritis (I am sure I spelled that wrong) but it is basically when untreated strep bacteria gets into your kidneys and you end up with kidney failure. It is very rare that an adult would get this because they would be able to kill this bacteria with their immune system and fever- luckily it was acute and after some dialysis and several weeks of rest my kidneys were nearly normal again. So as frustrating as it was to always be sick as a teen, and always feel as if I was different and could never keep up with everyone else- at least no one knew what it was. So instead of climbing rock walls and being punished- I was just a hypochondriac who needed to stand up more slowly.

Jen

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Jen, I had a dr tell my parents, "some kids don't want to participate in life and she seems to be one of them"

UNBELIEVABLE - bananas! Ugh - insensitive - they can't possibly be in our bodies and understand what we all go through.

Issie

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We just returned from Mayo last week. We were offered the program and it was made to sound really good. My daugther could not participate as I took on a new job back in January and don't have the time off. My daughter was born with this condition. We did not know what was going on as a newborn baby. She danced from the age of 3 until she was 11. Every year she declined in health and eventually had to walk away from dance due to the intense pain and blood pooling and growing symptoms/diagnoses. Not knowing what was going on at the time, we pushed her to "suck it up" and "move on." It wasn't until she was twelve that we found out her diagnosis and began putting all the pieces together. She became deconditioned while dancing not for a lack of exercise or being lazy.

We tried explaining this to them and kept asking why this program would help if exercise did not help the first time round. Why did she become deconditioned when she worked out for over an hour a day more than three days a week. They could not come up with a good answer. They had us watch a video of girls that went through the program and were now "better." The word "cured" was never used, just the word "better." In the video, the girls were jumping around and doing exercises, but they would always collapse on a couch in the midst of doing a short stint of their activity. They sent in a nurse as a cheerleader to promote the program. She could not answer my questions and instead of responding, would always redirect back to the "script" of what to say.

We got home and my daughter asked me, "mom, is this really going to make me better." All I could tell her is that we would try.

I am glad for this feed. It has helped me make up my mind as to whether or not we will return for the program.

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im very sorry your daughter was born with this condition. I guess I consider myself lucky in that i had 26 symptom free years before onset and ive had some ok times as well as bad.

There are times when I can push through and there are times when I most certainly cannot and in trying I am liable to set myself back. My first to lapses of POTS were much milder than my last two so everything I thought about POTS changed in terms of how disabling it can be.

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It is very hard. For someone who is born with POTS the best we can do is look for the very best band-aid because in my 50 years of having it - I still don't have a cure. There are periods of being okay and better - but, never complete remission. I'm sorry too that your little girl was born with it. But, I've had a very full, enjoyable life and there isn't too much that I feel like I missed out on. She will be okay and she will have a good life too. You just have to get her through this bad part and things will start to get figured out. There's many of us here that are proof that life goes on and it can be a good one.

Rama, you make me cry. I feel your pain and wish for you to feel much better. I know it's been a real hard few months for you and I hope things will sort out soon! (((((((((HUGS)))))))))))

Issie

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