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To Parents Of Teens With Pots


Christy_D
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I just wanted to let the parents of teens with dysautonomia/POTS be aware of a program at the Mayo Clinic for teens with POTS and/or other chronic pain. The Pediatric Pain Rehabilitaion Clinic (PRC) is a program to help teens get their lives back. It helps them to deal with the symptoms and still have a functional life.

My son had only been to school for a little over a month in the last 3 years and after attending the PRC program is now back at school (after a minor set back when we messed with his meds). It was an awesome program, to see the condition some of the kids arrived in and when they left they were all smiles. The program does not attempt to fix or cure just give the kids tools to help manage what they have. I wish we would have been sent there right after his diagnosis, some kids there were sent right away.

They also get to meet kids who are like them and have had the same experiences with friends/family/school not believing they are sick,etc....My son made several friends from around the country that he texts,skypes or talks to daily.

See their website:

http://www.mayoclinic.org/pain-rehabilitation-center-rst/pediatricprogram.html

Christy

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Oh Christy-

This brings tears to my eyes. I have watched your son (and subsequently YOU) suffer for years now. Back at school??? Hallelujah :D What a blessing. Mack could have benefitted so much from this program. I did my best to rehabilitate him from home :blink: and it was a struggle.

Has his med regimen changed? What made the most difference- exercise? There's nothing like getting support from your peers and our kids have very few TRUE peers, who "get" it.

I am over the moon for you-

Julie

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He was doing so well at the PRC that they thought he might not need some of his meds, so we weened him off and he crashed. So we had to put him back on, but he is doing better back on the meds. He is still nauseated daily but they have taught him meditation, distraction techniques, breathing techniques, biofeedback, etc... He went through physical therapy, occupational therapy and they had many other classes every day. It was a 3 week program that the kids attend every day from 8 to 5 and the parents also take classes(some with the kids) everyday from 8 to 2.

We are not allowed to ask him how he is feeling or what his symptoms are, and he is not supposed to talk about them or physically show them either. They did studies and it showed when you think about your symptoms and how bad you are feeling, the brain lights up and you feel worse. He can say he is struggling or having a bad day, but no specific symptoms or any rating of those symptoms. They were taught distraction techniques, like squeezing those stress balls or chewing gum or like smelling those markers that are scented. The brain then has to focus on taste, scent or feel and can't solely focus on the symptoms. These are just a few basic examples. I was skeptical at first, but it does work and so many kids were getting past their individual issues using these techniques. One kid came in in a wheelchair and hadn't worn shoes in 2 years because her feet hurt her. When the 3 weeks were over she left there walking with shoes on, it was amazing.

Again, they aren't even trying to cure them, just help them cope better.

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AMAZING STUFF!

I am so happy for your son. Good confirmation also that he still needs his meds. He is still sick, on the best med regimen that you've been able to come up with...and functioning!!! I will pray that he keeps up this awesome progress.

Hugs-

Julie

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Lynn,

He hasn't been having problems with it lately. His doxepin taken at bedtime helps a lot. They did stress that the kids have to maintain a regular schedule, even on the weekends. Even when he is really sick, he has to get out of bed and be awake instead of using sleep as a coping mechanism. We used to always just let him sleep until he felt well enough to get out of bed. We let him lay on the couch and watch tv, but no staying in bed and sleeping all day. Now, I don't know how well this will all work if and when the insomnia kicks back in. In the past, in didn't matter how much he did during the day, sometimes he still couldn't sleep. But they stress, no sleeping late and to keep to a strict schedule with only a 1 hour variation on the weekends.

Christy

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My 16 year old met about 5 teens with POTS when we stayed at the Ronald McDonald House. She was being diagnosed with POTS during this visit. While she didn't seem to need the rehab program we heard wonderful things about it both from teens and their parents. I know for my daughter just meeting other kids and being able to talk about it was helpful for her. I think hearing how severe their POTS got and how following the plan was helping seemed to motivate my daughter to follow through on what the Mayo set-up for her, well at least most of the time.

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  • 1 month later...

Hi Christy,

After sending a private message to you, now I found this post that you started..So now i have a little more info on what specifics they do in this program. I was wondering about what they do that is supposed to really turn things around for these teens and children. Thanks for listing some of the things they do in the 3 weeks, was wondering what this program was all about. I do know about the goal of getting off of as many meds as possible, and the not talking specfics about symptoms and pain. It just seems like it would be so hard to do that sometimes...is it still working for you guys?

Dawn

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