USF Pros/Cons?

[T_Anna]

Many of the posts have positive mentions of the USF Rothman Center. I am considering looking into taking DS 14.5 there, if things do not improve over the next few weeks. I thought is would be helpful for myself and others out there also on the fence to read a focused thread on USF experiences. If you can tell your personal story and answer questions that we may have had before going.

1. How long were you there?

2. Where did you stay?

3. Are you with your child during therapies?

4. Is it a full day (9am to 5pm)?

5. Was there therapy over the weekend?

6. How did your child feel about the process?

7. Did you meet with Dr. Storch? Dr. Murphy?

8. Costs at USF?

93. Would you recommend doing this?

 

Thanks in advance,

T.Anna

DS 14.5

[dcmom]

I cannot recommend USF enough. I took my two pandas (ocd) daughters there 1.5 years ago, after working with several local therapists (without much success). IMHO pandas treatment needs to be both medical and psychological. USF therapy is not a replacement for appropriate medical treatment, but will work very well in conjunction with it.

 

We did the three week program (typical).

We stayed at the Ronald McDonald HOuse, and loved it. We followed up with a "reward" trip to Disney.

The parent is with the child most of the time, and completely involved in the therapy.

The therapy is one hour per day, weekdays only.

We stayed in Fl on the weekends, did fun things.

My kids were fine with the process, which in the end worked- so they were happy.

We met with Dr Storch for intake, our Dr was Dr Rahman- who I adore. We did not meet with Dr Murphy, as we feel we have good docs for the medical aspect.

USF was covered by insurance for us. We paid about $200 out of pocket per child, and I think a $200 donation to the RMH. The whole trip was very budget friendly.

[philamom]

T. Anna- you can call and talk with Dr. Storch himself. He is very friendly and will answer all your questions honestly. We are going to take our daughter there in the summer. She has a phobia of vomiting, herself and others. We were looking at the program in the fall, but then she became unwilling to participate in exposures (due to a strep infection). Now doing better again with exposures, but we are focusing on trying to get her to school. Anyway, I found it very helpful when I talked with him on the phone.

[Agnes26]

1. How long were you there? 3 weeks

2. Where did you stay? 1 week RMDH/2 week at private condo

3. Are you with your child during therapies? Yes

4. Is it a full day (9am to 5pm)? No. Just one hour.

5. Was there therapy over the weekend? Nope

6. How did your child feel about the process? Reluctant at first, but after a few days, after she warmed up to Dr. Rahman and realized it was helping, she was totally on board.

7. Did you meet with Dr. Storch? Dr. Murphy? Dr. Rahman for ERP and consulted with Dr. Murphy.

8. Costs at USF? Don't know. We had met our deductible, so it was covered 100 percent. Dr. Storch will tell you what out of pocket costs are. He's great.

93. Would you recommend doing this? ABSOLUTELY. The best thing we've ever done. It gave me my DD back.

 

@ DCMom. Wasn't Dr. Rahman the best? I wanted to pack him in my suitcase and bring him home.

Edited January 11, 2013 by Agnes26

[mdmom]

1. How long were you there? 3 weeks

2. Where did you stay? Rented a house near the beach and got to do fun things each day.

3. Are you with your child during therapies? part of the time, but he is 15 and dr. felt like he was mature enough to be on his own mostly

4. Is it a full day (9am to 5pm)? mostly 1 hour/day

5. Was there therapy over the weekend? no just homework

6. How did your child feel about the process? very positive - got another piece of my son back

7. Did you meet with Dr. Storch? Dr. Murphy? Dr. Storch did intake interview on Day 1; Dr. R did the therapy and I seriously wish I could have brought him home with us. He is amazing.

8. Costs at USF? none for us because we met our out of pocket max for the year

9. Would you recommend doing this? YES, Yes and yes. It was one of the best things we have done so far. Medical-only interventions will not fully address the OCD/anxiety; you've got to hit it from all angles.

 

PM me if you'd like - we were just there in Dec. with my DS15. Glad to talk to you more about it. DS has had many, many therapists over the years who claimed to treat OCD and nothing worked. ERP was definitely the answer for him.

[dcmom]

OMG- yes. I LOVED Dr R. He is truly gifted!! He was so funny/ tough/ smart! Wish he was in NJ- totally wanted to take him home! Now I call it- "I am channeling my inner Dr R". Just cannot say enough about how he just simplifies everything/ gives it to you straight/ and doesn't fall for excuses. When he talks about ocd/anxiety/ behavior issues/ etc you can't believe how simple it is- why can't all psychs break it down and solve it. He doesn't sit around talking about it, he fixes it! EVERYONE else we have seen pales in comparison- and we have seen some highly regarded psychs. okay- don't get me going

 

And, Dr Storch is wonderful too!

[michiganpandas]

Same exact answers as dcmom...we were also there for an EXTREME fear of vomiting.....also with Dr. Rahman who is amazing. I'm still just bitter that there is not a clone of him here in Michigan.

 

We loved it there....I also loved that the parents were involved with the therapy....since the year prior was filled with separation anxiety with my daughter it was the first and only therapy I have ever been able to go to myself and it was beyond helpful for me and my husband to be able to experience a day of PANDAS and then sit down the next morning to talk about it with him and my daughter.

 

Couple of things...if you have other children and go...we were able to leave my son in the waiting room which was great (he is 7)...there is a video type game and tv in there with cartoons on so that was great....but, after the first week we met another family at the RMH so we were able to leave our son with them and we took their daughter (the sibling) when her brother was in treatment.

 

We couldn't do much with my daughter for an entire year (sudden onset March 2011)....so when we went to Rothman in the summer of 2012 it was so nice. It sounds funny to non panda people, but it allowed us to try to get her to do fun things and to deal with the anxiety of the fun things as an additional type of exposure.

 

Now, we are still not 100% (I thought we would be, but we still have ups and downs, stomach and throat pains, anxiety and ocd)...but, all of it is to a much lesser degree than before we went. Make sure your child is in a place that they are ready to work. There was no way we could go in 2011...I knew about Rothman then, but she could not even leave my side and was sooooooooo bad. It took a year of us doing our own type of exposures to slowly get her out and about and in 2012 she was excited and ready to get better.