Is anyone at USF this month?

[dcmom]

Is anyone at USF/ All Childrens this month?

[Dedee]

Just got back on Sunday. My daughter and I both cried when we left our last appointment Friday. She told me she wished she could come back every day. You are going to love it there. Today is my first day back at work in over 3 weeks. I am miserable. Please PM me and let me know how things are going. I wonder if you have the same therapist we had. She was wonderful. Have you already started? Where are you staying? I hope you have a great experience.

 

Dedee

[airial95]

Nope - but we're local, in Tampa, so if you have any questions or need anything, feel free to PM me!

[Dedee]

Airial95, I thought about you the day we had our appointment with Dr. Murphy. We first interviewed with the Doctor that you had told me was so good that your son sometimes visits. It was just a fluke thing and when she said her name I recognized it from one of the messages you had sent me. She was wonderful with my daughter and as good as you said she would be. You are lucky to live so close to such a great treatment center.

 

Dedee

[Burnell]

Our daughter (dd) is going this month to USF at the Rothman Center for her OCD. A few questions...

1. Did you find it helped reduce the OCD in you child?

2. A question for you who have been there: we are considering who to have come (mom, dad, daughter-age 12, brother-age 10) and for how long. Our daughter's OCD can be set off quite intensely by her only and younger brother. Anytime she sees him touch an object such as a toy or fork she has an "episode" in which she must have - or go touch - the object immediately. Its quite fun when traveling in the van together...not. Do you think dad and son need to be there week #1, or would us going weeks #2 and #3 suffice?

3. Did you stay at the McDonald house the whole time? We thought about renting a condo at St Pete for 2 weeks, and being able to beach in the afternoon/ evennig to destress. Is that a good or bad idea?

[Dedee]

We just finished the program. Those are great questions. I will PM you.

 

Dedee

[dcmom]

Burnell- what dates will you be at USF- we are here now.

Write more later!

[dcmom]

Hi everyone! Finally have a moment to sit at the computer (and not my phone).

 

We are at USF for intensive ocd therapy now. We arrived Sunday, and had our first meeting on Monday. I will give you some info, first impressions, really!

 

We are staying at the Ronald McDonald house. The first night (we arrived late and tired) I was not sure if it would turn out to be so great- but now that we are here for a few days- it really is. There are many benefits: firstly it is spotless, and the managers and volunteers, and guests are all very kind. We have our own room (2 double beds) with a bath. There are several tv dens, a playroom, a huge 4 kitchen dining space, and a yard. Volunteers cook dinner just about every night (tonight was a BBQ) with love. There is always food available. The kitchen area is large (4 kitchens, really) fully equipped and comfortable. We haven't, but one could certainly cook a full meal here. Every family has refrig space and pantry space, for your own food. It is as close to a home as it could be.

 

The house is 5 to 6 blocks from the grocery store and cvs. Three blocks from Dr Storch's office. So far, we haven't rented a car. There are several things to do a short cab ride away. We plan to rent a car later in our stay.

 

The are some intangibles: although our kids suffer so- and they know it, we are reminded daily here that what we are dealing with is somewhat small potatoes compared to what other residents are dealing with. I think this has been humbling for myself and my daughters. It is also beyond touching to see charity in action- for some families this organization is literally a lifesaver. We plan to make cupcakes for the whole house once a week, and are already thinking about getting involved with the RMH in our area. I do think the stay at the house will enrich our visit somehow (although we are NOT sipping frozen drinks at poolside- which has its own benefits).

 

Of course, there is a huge financial benefit. They ask $10/night, and for that we have many/ most meals and laundry- and don't really need a car. We (thankfully) probably don't NEED the house, like many of the others here, yet it is a huge financial break. We have paid a lot (as everyone on the forum) in medical bills in the last two years. While we could have swung a rental or hotel- it would be a financial burden. This way, we are able to save those funds for possible IVIG or PEX in the future, and just maybe a family vacation. We are also taking the kids to Disney for a long weekend after the program (as a reward/incentive)- which would have been impossible if we had to foot the bill for a hotel/condo while here.

 

I think it is in some ways harder for me (compared to staying at a condo)- due to very little down time- but in other ways (having others prepare dinner every night) it is a break

 

As far as the therapy- it is too soon to tell. Obviously Dr Storch is brilliant, and KNOWS pandas. He is not our therapist (initial meeting was with him). We have gentelman dr. who we saw for the first time today. I can tell you, my younger daughter was less than cooperative, and less than thrilled in the session. I am confident that this is the best place for ERP/ CBT- which is why we are here. I completely accept and understand that future episodes will require medical intervention and time, but will also require tools that I hope the girls will learn here. I am here with the feeling that this is the beginning (and an awesome beginning) of therapy, and that we will need to "brush up" in the future. But- I am here because I want to do the best, to give my daughters the tools to LIVE their lives the way they want. Also- there is the real fact that this is covered by insurance for us- whereas any quality therapist I have found in NJ does NOT accept any insurance. I think the daily (for three weeks) format will be REALLY key. This could be done with a local therapist (we did have one we liked in DC)- but at $200 a pop x 15 days x 2 kids.... you get the picture.

 

That is all for now. Dr Storch implied there were other pandas families at USF now, and maybe in the house- which is why my original post.......

 

I am planning a full update for mid Sept (when school is back in session).....

[taytay]

Thank you for sharing your experience so far. Our 12 year old daughter is doing better on abx but is still struggling with OCD issues and is in denial. I have contacted Dr. Storch and am considering traveling from Texas to Florida for treatment. I want the very best for my dd. We were seeing a CBT therapist here but she could not get through Taylor's denial and I could tell after three sessions she didn't know what to do to help her. I am trying to get in to see another psychologist here but don't know if once a week will be a good start for Taylor. Hope your experience continues to be a positive one.

[Burnell]

We are going to USF in 2 weeks. Our dd age 12 will not even let us say ther word "touch" and won't talk about why, she gets too upset and mad.

I am hoping USF will help her express what her recurring thoughts are,

A therapist we saw in Lancaster PA told her to look at pictures of her brother's fingers and resist. As of now she has ZERO ability to resist her compulsions.