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I just spoke to him on the phone and he told me to come down for the 3 weeks. Funny, at the time i wasn't sure it helped, but just recently DS said that the 3 weeks had been the hardest of his life and he learned that quitting and lying down in bed (which is essentially what he had been doing) would never be an option again.

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Thanks Lynn. Not sure if protocol has changed, as the person I spoke to this morning said we needed to come in for an evaluation first. I'm waiting to hear back from Dr. Storch. I'm hoping that since I spoke with him in the fall I may not need to make the additional trip. He knows of my dd's psychologist, so maybe he could speak with her if needed.

 

Glad to hear it was beneficial.

Edited by philamom
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philamom-

 

we did not have to fly in separately. We had a long talk on the phone, and did probably the official intake with him as our first appt when we flew to FL for the three weeks. I cannot say enough about Dr Storch and Dr R (who was our therapist)- they are amazing and inspiring and totally "get" the ocd- and they are totally unphased by it!

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I know this has been posted before, but can you please give me suggestions for weekend activities. What can we walk to? What can we drive to? From Ronald McDonald House.Thank you.

 

edit to mention we are going for a vomiting phobia (fear of herself and others vomiting - especially classmates). She does have daily nausea/headaches due to lyme & bartonella, possibly strep - elevated d-nase since January), and we will soon be switiching/adding antibiotics. But I want to do this program first.

Edited by philamom
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my dd went there for the same reason....INTENSE fear of vomiting.....you will watch several videos of vomiting......our personal favorite is the Family Guy chowder scene and also a spanish lady on a roller coster vomitting over and over with her family freaking out....oh, the fun memories! lol....feel free to find those lovely videos on youtube! .....she also had to go to "rate my vomit"....and rate the vomit pics people send in!

 

It did help my daughter.....not pefect at first...but, it has given her skills to refer back to and I would say that they were, by far, the best therapy that we could ever probably get....I thought for sure we would be back there this summer, but so far my daughter is doing so much better compared to where we were last year that I do not feel she needs a refresher at this time

 

You will walk to the RMH because it is right next to it....my kids had fun trying to catch lizards on the walk there.

The St. Pete pier is awesome and you can see dolphins each night (usually) around 5:30

 

We visited St. Pete beach and Clear Water beach.

We also drove to Disney on a Wed. after therapy and drove back to the RMH that night (back by around 11:30).

 

All of the things we did were beyond amazing that we even did them.....my dd could not even attend a movie at the theatre without intense fear....so we actually were trying to force fun things with her (again, only a pandas family would understand this)....it was perfect, because we could then go to therapy the next day and discuss what was hard, etc.

 

We had and loved Dr. Rahman! He is pretty much a hero to our family!!!

 

The RMH house was sooooo nice.....meals provided....and friendly.

You can go to the Sunken Gardens for free...Dalhi Museum for free....and work out at the YMCA (but, that was too far of a drive...I just ran around St. Pete)

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Michigan- thanks for the suggestions. did you do exposures (homework) at Disney? lol. My daughter has been viewing "rate my vomit" for a few months. She has come a long way. At first she had to peek from another room with sound off while we described the scene, making fun of it. Like, whether it was real or a fake photo. She would always say the people were faking :) She moved on to watch it directly in front of her. I will check out the other you tube sites. Thx. But we are still missing a component. And with winter illnesses she has regressed. One piece of exposure she hasn't done is to involve strangers. I think I recall dcmom saying her child had to walk up to people and announce they vomited - something like that?

 

My daughter also can't go to the movies. It depends on where she is in a flair. I try to bribe her sometimes by paying her (again, only a pans parent would understand). When it was really bad, she wouldn't even watch tv.

 

Anyone else have suggestions? Is there an aquarium near by? Sort of remember someone mentioning it?

Edited by philamom
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yes,,I forgot...the tampa aquarium is also free if staying at RMH..and my kids loved it....we also went to go see Winter the dolphin, but it was a lot of money and actually more fun seeing the dolphins at the Pier. We also went to the zoo (can't remember which one? ) but, they went on a camel ride and fed the giraffes.

We had my daughter work on her 2 main fears....vomiting and eating sugar.....the eating sugar fear was beyond annoying to have because EVERY stinkin day she would come across junk at school (rewards) or at friend's house...and she loves sugar/junk foods.....she would eat it and then totally panic all day with a fear that it was going to make her sick. She still has issues with this one, but it is a lot better.

The other biggest one was the vomiting fear....she would ask me at least (no exaggeration) about 100 x's a day if she was going to throw up....and would have a panic attack at least a few times daily...it was HORRIBLE!

It is great that you are starting now with exposures....if you have any other questions let me know

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Yes! Strangers were involved in our exposures! It was invaluable. Our doc (DR R) was amazing, and really spelled it out to the kiddos. No excuses!

 

We went to the holocaust museum in St petersburg, St Pete's beach, and at the end of the trip we did Disney. We liked hanging around the RMH- they are wonderful! We baked cupcakes for the house, and kept ourselves busy with stuff there during the week.

 

For such a difficult time, it was a wonderful, life changing experience for all of us-

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We went to the Dali museum (free to RMH). It was fascinating--DS got a t-shir of the giraffes with their hair on fire that is quite the conversation piece. Also, if it works out you could drive to Cape Canaveral and see a rocket launch -- we did that and it was very cool.

 

One tired mom, keep trying, it took me a few tries also. I think the clerical folks get overwhelmed.

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I'm local - there are lots of things to do into the Tampa area, and if you're going this summer - the Rays baseball stadium is pretty close to Rothman. The beaches are great, and Busch Gardens in Tampa is really nice weekend if you don't want to haul to Disney. Depending on how old your child is, Legoland is fun, but geared towards the younger set.

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I spoke with Dr. Storch this morning. He is out of the office until Monday. If you are still interested, you could call Monday to speak with him.

 

  • How are you all getting appts? Months ago, I called and sent an e-mail. No one replied. I gave up.
Edited by philamom
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