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So, we are going to Rothman. DD12 has her first appt on Tuesday. We rented a small condo on the bay about four miles away. My daughter really wants to meet other kids "like her." I thought I'd put it out there to see if there are any other girls around her age in the area that might be interested in making a new "friend" and sharing her experience?

 

Our condo has two pools... maybe we could arrange a get together? I'd also love to talk to other moms, but mostly this would be for her. Please message me if you are interested.

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Where were you two years ago :)

We did 3 weeks there two summers ago, with my then 12 year old daughter. We also stayed at a condo on the bay. She saw Omar - he was amazing!

Just wanted to wish you well.

 

Thank you for your well wishes. Unfortunately it is not going well. After two weeks, she is regressing. I think we aren't far enough in our treatment of the infections. We are actually thinking of not staying to finish the three weeks. When she is afraid, she just shuts down... .her eyes glaze over, her body and behavior change, she becomes like a three year old (she is 12). It is heartbreaking to watch. She is afraid of everything all the time, and we are trying to make her do the very things that terrify her.

 

I am a huge believer in the therapy. I know it will work for her someday. But it isn't what she needs right now.

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I need to do this too with my 11 year old DD. I wish we could be there with you! How did you find the condos?

 

Hi. We found our condo on VRBO. It is a site we use for vacationing all the time. There aren't many in St. Pete itself. I didn't want to be at the beach b/c it's a bit further from Rothman and is overrun with tourists. We actually live at the beach in Virginia Beach so being on the beach isn't a novelty for us. We are very close to downtown St. Pete in a little waterfront community called Waterside at Coquina. There are two very nice pools, and our condo is on the water. But it is a bit far if we want to go anywhere like into Tampa (min 30 min drive) or shopping (at least 20 mins). But it works for us.

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I'm so sorry for you. My heart really does ache. All that effort, so sorry. Do you think they pushed her too hard or just that she wasn't ready, or both? I'm very nervous about doing this, exposing her to all of these fears when she's not at home with her daddy and her dog. I don't know what to do or when. She hasn't flared since January, but the fears are really ingrained in her.

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I'm so sorry for you. My heart really does ache. All that effort, so sorry. Do you think they pushed her too hard or just that she wasn't ready, or both? I'm very nervous about doing this, exposing her to all of these fears when she's not at home with her daddy and her dog. I don't know what to do or when. She hasn't flared since January, but the fears are really ingrained in her.

 

No. The doctor didn't push her at all. I truly believe it was because she was on a pulsing break from her abx, and the inflammation got too bad. The timing just wasn't right for us. I wanted her to come now to try to not interfere with school but honestly the way the last week has gone, I don't even know that she's going to make it to school this year.

 

I believe in the therapy. But I think the infection has to be dealt with first. As long as there is an active infection it is an uphill battle. I just wish I had seen that before we spent all this money and time.

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