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#1 Ernie

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Posted 07 May 2011 - 06:22 PM

Hi,

I have looked at the dynakids site and it looks very complicated to be accepted. They have to call home (they call only once) to check who he is, he has to sign a document, etc.. He lives part of the time at my place :blink: and part of the time with another parent. So, if they call and he is with the other parent, they won't be able to reach him.

My question: Is it worth all the trouble to get him on dynakids?

You can PM me if you prefer.

Thanks

#2 Mack's Mom

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Posted 07 May 2011 - 06:38 PM

Hi Ernie-

My son is 18, but DXed at 12 y/o. He was never one to reach out for help...still isn't. It depends on your son. Is he excited about the idea of "chatting" with others similarly affected? If so, go for it- although (I agree) the process sounds pretty cumbersome. One thing I do remember from Dynakids, 99% of the participants are girls. That kind of turned my son off. As we know from the fella's represented here, guys are affected; but tend to reach out less :( What a wonderful Mama you are to encourage him to seek support!

Julie

#3 kcmom

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Posted 07 May 2011 - 09:07 PM

I say it is totally worth it. It really is only a couple of steps. I think we get so used to instant results that we forget the value of things that we have to wait for. Debbie who runs the website works really, really hard to make the site a safe place for the kids and a place where the kids will be supportive of each other. There are more girls just as there are more girls with POTS/dys but there are more boys now. He doesn't have to be chatty to learn about how to deal and manage his condition. It was invaluable to my son to know that there were actual other real kids out there with the same thing and feeling the same way about things as he does.

In this day of cyberstalkers I feel better knowing that the list is so well monitored. I think you would be doing a great service to your son to give him this opportunity and if it isn't for him then that is his decision, but it can be a really great thing. You can tell them when the best time to call is so don't worry about if your son isn't there and they are really nice so you will enjoy talking to them also :)

They also have a parents forum.

#4 cathy

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Posted 08 May 2011 - 07:03 AM

My daughter and I were members of dynakids for the first 4 years of her illness. It totally saved me and my daughter connected with some awesome kids. Yes, mostly girls, as pots is mostly girls. The moms are very knowledgable and caring. Last year, something went on, everyone was kicked off and had to "reapply". There was a shakeup of the moderators. I have talked to a moderator that was asked to "resign", and it was just a strange situation. All I know is they have strange rules that they go by, and your opinion about your child doesn't count. We weren't allowed to attend their summer conference because according to them, my daughter was "to sick to attend." She is in a wheelchair, but healthwise is doing better than ever!! But their rules. We didn't rejoin.

#5 Ernie

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Posted 09 May 2011 - 10:21 PM

Hi,

Thank you for your insight. I will wait until he comes to my place to ask for the phone call.