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sue1234

Mayo Story Of Someone "overcoming" Pots

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This ties in to my other post of yesterday, where I was looking for moral support. How do we know when to "suck it up" and pretend its not there, and when to listen to our bodies and take things easy? Sometimes the former works, and sometimes it leads to a crash.

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The way I do it is that the first three or four months of avrelapse or flare up I tend to listen, after that I try to push but take my foot off if it goes pear shaped.

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The PRC at the Mayo also stresses to the kids 'moderation'. They know the kids can over do it and crash and they go over moderation a lot. They also stress to the kids a regular schedule. For teens, they want to spend the night with friends and stay up all night and that will only make them crash or feel worse. There are many positvie aspects to the program and many kids do get at least part of their lives back.

I think the worst part of the program is the parent portion, so I would do it again for my son if I had to remake the choice. They never tell them it is in their heads, they know it is a real physical issue. We took all the information we learned there and chose what we thought was best...no punishing,etc. We also got to witness first hand kids that came in in wheelchairs or crutches and left without them, and the kids were happy. When the kids 'graduate' from the program they each get up and give a little speech and they were inspirational for the kids that were just starting the program.

While I wish we could say my son was a success story, it was still a positive experience for him.

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My first reaction after watching the video, was, does this boy even have POTS. To be honest the mothers description didn't sound like POTS at all to me, it just sounded like chronic fatigue. I wish she could have been more specific about his symptoms. Last time I checked bone fracture weren't a major POTS symptom.

Still bothers me we don't have studies on success rate, mortality and morbidity rates. But from what I read in bits and pieces it seems like the pediatric POTS community has high success rates in overcoming POTS when they reach adulthood.

According to Rama's poll many people here clicked that they had success with exercise. I'm wondering what type of success. Did it help with fatigue mainly? It's very strange how Rama, myself and every this boy all exercise at a high rate before the onset of our POTS flares. So it would seem I got no protection from POTS by exercising more, so how would it make it any better. Just odd to me. I hypothesize that after a flare someone could tend to get deconditioned and so later on exercise helps with the fatigue aspect by reconditioning. The other thing I've heard some specialist mention is that my exercising our legs that helps with the pooling.

Only problem with me is POTS causes scary breathing issues for me and exercise I believe only makes it worse. I hypothesize again that my pooling causes my breathing issues maybe by dehydrating my lungs or making mucus dry or my stiffing my vesicles.. Exercise raises my heart rate and adds to sweating which further dehydrates me.

I'm glad this boy was helped but doesn't sound like he was accurately diagnosed to me from what the mother has said. Sounds like he had chronic fatigue syndrome because the first thing I would have mentioned was heart rate, fainting, dizziness and not bone fractures..

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I just stumbled upon this post and I watched the video. I have to say that I am completely disgusted. I am curious as to what Dr. Grubb thinks of this program. I think it is a medical setback for all of us who have POTS. I feel like they are telling these kids to just "deal with it" which I think in turn sends a message to the general public that POTS is all "in our head". I am an adult with POTS. I was diagnosed 10 years ago at the age of 41. I will be the first one to say that more times then not, mind, not medicine has gotten me through my day. However, I was an adult when I was diagnosed. I had a husband and two children. I wasn't a teen trying to deal with normal teen stress in addition to having a debilitating condition. I also had more years under my belt so I had experienced the light at the end of the tunnel in other situations so it is was easier for me to believe that there would be one in this situation. I have had several bad experiences with Mayo so this video doesn't surprise me at all. Punishing a kid for not going to school when they are physically ill? That is absolutely crazy! I fainted this past March, hit my head on a glass wall and cracked my head open. My 11 year old daughter had to call 911. I ended up with a concussion, stitches, and a horrible headache for days. All I can say is, thank goodness the situation wasn't reversed (my daughter being the one with POTS). According to Mayo, I would have had to punish her for missing school.

Do I believe that your diagnosis should consume you? Absolutely not!!!! However, I do believe the Pediatric Pain Rehabilitation Program at Mayo will do more harm than good to these kids in the long run.

P.S. To all the parents of children with POTS, teach them life skills (on days when they aren't too symptomatic) and show them how to use these skills to deal with their illness.

P.S.S. Yesterday I had my 11 yr old at the doctor because she needs orthotics. He told her that pain was your body's way of telling you that something was wrong and that when your body tells you something is wrong you need to listen (obviously he isn't a Mayo doctor).

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It does focus on ignoring and not displaying your symptoms.

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

I love how you explained this Christy. Although I have been bed bound and at times I may need to rest, missing out on life doesn't help. When I am able I do as much as I can. In many ways I am thankful that I have children and animals that need my care. It forces me to get up and get moving when I feel like I can't. For some time I took a bucket everywhere I went. It is really hard to make yourself go anywhere or do anything when you are so sick. I do have to be aware of how I am feeling ( i will pass out and have broken my nose ), but when I am distracted from my "sickness", i feel better.

I am sorry this didn't help your son more, but it is great that he met other kids who understand. It is wonderful to know someone else understands.

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I just got back from Mayo's Pediatric Pain Rehabilitation Program. I had many of the same concerns that you all do when I went, but it worked for me! I went in a wheelchair and using a feeding tube, and left walking and eating everything by mouth. We're fairly sure I have mitochondrial disease, which is progressive and life-threatening-- so I am certainly not one of those kids that would naturally improve anyway. I am not cured, and I still have limitations, but my limitations are minuscule compared to what they were. There are still some things about the program I'm not a huge fan of, but as a whole, it was miraculous.

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