USF Rothman program~~going soon!

[PANDASmcnuggetsw/fry/coke]

It looks like we are going very soon to the the Rothman program in Florida to see Dr. Storch. We were hoping to see Dr. Murphy as well, but she is looking booked. They want to schedule us with Dr. Rempher for the Murphy side of things. Anyone have any experience with him? We are wondering if we should go this soon or postpone til we can see Dr. Murphy too. Yet b/c this is the side that would prescribe SSRIs, I would imagine he would follow her protocol~low dosing and slow etc..

 

If we postpone to see Dr. Murphy, we would not get until JANUARY, unless there is a cancellation. OR we go in two weeks and see Storch and Rempher.

 

Please any and all input!!

 

THANKS :-)

[PANDASmcnuggetsw/fry/coke]

Also we will be seeing Dr. Marni Jacob for the CBT/ERP. Anyone have any experience with her?

 

THANKS!

[PowPow]

we ssw Dr Rempher! GO SEE HIM! he was great!

he is a pediatrician who after practicing for years is in the neuropsychiatry fellowship. very thorough, smart, interested..Go GO!! I do not know if he will prescribe psych meds since you are far away, but he will examine, labs, and make recommendations. their abx recommendations made huge difference in my daughter!

I am so happy you got something so soon!.we saw dr horng for cbt.

[airial95]

Dr. Toufexis and Dr. Brown are also fellows of Dr. Murphy that we have seen - they are wonderful. We have seen many of the fellows (although not Rempher - sorry), and have loved almost every one of them. There was one that we saw 2 years ago that wasn't the greatest - but she's not there anymore, only saw her twice (can't even remember her name!)

 

Dr. Toufexis is who we have seen most regularly - but she had a baby a while ago, so while she was on leave we saw Dr. Brown and others.

 

The fellows that we've seen are always prepared - have reviewed my children's files prior to the appointment, take the time needed with us, and are willing to step out and consult with Murphy - even if she's not available at the time. So you're still getting her expertise. She's even "popped" in on our appointments when she was presented with a challenging question about our son - eventhough she was booked that day.

 

They're also pretty good about responding to email within 24 hours - even if it's only mailed to the main address.

[PowPow]

Same experience here- Dr Rempher read everything and Dr Murphy did too ( I gave it all to them ahead of time) and Dr Murphy popped in and spoke with us (oooh, I have been in the presence of a rock star .... ). Dr Rempher checked my daughter for myco p (never been done before) and she was highly positive for a current/recent infection. They added augmentin 1000 mg XR and doubled the zithro and she is doing well on that.

Our pandas doc had not done the augmentin yet for her-- onyl zithro and clindamycin/rifampin protocol.

From what i could see- the people we met who worked there are VERy interested in this neuropsych stuff- just like all of us are! We read each other's stories with interest and care, and I think the folks at USF do also. We met several students functioning in different capacities as well.

[PANDASmcnuggetsw/fry/coke]

Thank so much everybody! I was so jazzed to see your messages, I booked flights. I can't believe we are actually going to go. So happy!!

Now, where should we stay? What is Ronald McD's like? We are big into having quiet and privacy,so just the name makes me a bit nervous! Any good hotels, not too pricey and not too far away?

 

GRACIAS

[Agnes26]

I spoke with Dr. Rempher on the phone. He seemed nice. We leave for USF in a week. Maybe we'll be there at the same time. I, too, am interested to know how the Ronald McDonald House is. DD doesn't do well sleeping anywhere but her own bed and has food allergies so kitchens besides my own make me nervous.

Edited September 5, 2012 by Agnes26

[PowPow]

There are 2 RMHs-- one is a converted house (very beautiful and quiet) the other, I think is more like a hotel- maybe even more private? dcmom stayed in that one, PM her or maybe she will chime in.

We had a bedroom with 2 twin beds and room for a cot (which my husband used when he came for the last week), our own bathroom/shower. There is a large laundry room and kitchen. you can purchase food and label/ store in a fridge in kitchen. There is much food there to share, both prepared meals by kind volunteers and also donated stuff from the grocery stores. We really bought little food out- which my wallet was grateful for (though we made near daily stops at Tropical Smoothie Cafe on our walk to and from therapy).

 

Since we were staying for 3 weeks- we could not afford a hotel and frankly= it is so close to the rothman center- I would do it again. Most of the people in the house we stayed in had very sick kids at All Kids Hospital, and they were not there most of the time. Also, the kids with bone marrow transplants who could not go home stayed there, on "their" side of the house- so it was very quiet.

If you decide to do it- call the RMH tampa bay/st petersburg and ask them how to proceed. USF had to fill out some paper saying we were indeed going there for tx, etc.

The staff at RMH (someone is there all the time) are very familiar with PANDAS pts staying there and are kind and understanding of these kids.

I am a bit freaky about hotels and carpet and that kind of thing (ocd?? ) but staying there was easier than I anticipated and it was so convenient and easy- it made that part of our trip a breeze.

Hope this info helps!

Best Wishes to both of you heading to FL!

[dcmom]

We stayed at the larger RMH in St Petersburg for three weeks. It was myself and my two girls, both pandas, both there for treatment. I have to say it was a beyond wonderful and life changing experience for us. The "hotel" is much more like a home, and the RMH saying "the house that love built" describes it aptly.

 

We had a private room with two queen beds and private bath. No TV in the room, if that is an issue. Very basic (comfort inn?) room, but VERY clean. Each floor has a small TV room that only one family at a time uses. There is a child playroom and TV room downstairs, along with an adult TV room, lobby, laundry room, outdoor patio and playset. There is a large kitchen (about 4 kitchens in one), food storage for each family and a dining room on the main level.

 

Every family is given a "chore" to do daily. (we had to vaccuum the upstairs hall). Dinner was provided every night by a different group- companies, churches etc. Some were elaborate spreads. Much of the house ate at the same time, when the dinner was served. We baked for the house a few times while we were there, something fun for the kids.

 

The staff and volunteers were amazing and wonderful to us. The other residents were all wonderful. We met some very interesting people. Most were suffering through something way more challenging than pandas, this gave myself and both girls a great dose of perspective.

 

The house was fairly quiet most of the day, as many had kids in the hospital- it would be a little livelier at dinner time.

 

Since, the RMH has become our family charity. We have a local one (much smaller) that we cook dinner for, and this past year my older daughter set up a school wide fundraiser for them. Staying there, for us, was a great "addition" to therapy. Gave us all a nudge to realize how fortunate we actually are.

 

Being there alone with the kids, I think (besides the budget savings) it was easier for me- not to have to deal with dinner nightly. We rented a car on the weekends to hit Sea world and St Pete's Beach.

 

Good luck- feel free to ask me any questions.

[PANDASmcnuggetsw/fry/coke]

Thank you so much for the info on RMH. Looks like fun and a very worthy cause! Having hard time convincing her though. Wants more time alone and less social interaction. We'll see....

[Dedee]

So happy to hear you are going. You will love the group at USF. CBT / ERP will be so helpful to the family. As the others have stated, all of the physician's are top of the line. We have had great experiences there. We stayed in a Condo when we were there. There are many good ones to choose from varying in price range. I did a google search and picked ours that way. Maybe we were lucky, but we have gotten nice ones each time. Best of luck.

 

Dedee

[PANDASmcnuggetsw/fry/coke]

Thanks Deedee and I hope that from your siggy line, there is peace in your home. I'm still going to put my vote in for RMH and let her know if she hates it we can look elsewhere as this is the off-season for tourism....

 

I have spoken with Dr's. Storch and Rempher now on the phone and they seem GREAT.

[Burnell]

was there 3 weeks last summer. same deal as you w/ Murphy. Ended up seeing her anyway. You see one of her med students and then see her abit at the end. See her or not you really need a pediatirc psychatrist at hom elong term that prescribe brain medications - lexipro etc.

 

we rented a condo at treasure island. less than for a hotel. 20 min drive.

Its alot of hard work for your kiddo. Not a fun vacation. Be prepared. They get pushed hard and are upset alot.

 

Watchout for the 1st day's questions from Storch or whoever. Their questions put new ideas of odd behavior into our child that she began to do that night and still battles with. I am still bitter about that. See if they can ask you all the questions with the child OUT of the room.

[dcmom]

Burnell- I am thinking you are talking about the test for the ybocs score? Did you tell them at the Rothman center that this put ideas into your dd? I know that is a standard test psychs use for ocd. I hope things have improved for you and family.

[Jtsmama]

The RMH West house is the quietest. Ppl tend to keep to themselves there. The East is lively. We live in Florida & have been staying there for years. The staff are amazing, fine volunteers but some need work. If you are staying for Weeks & are going to hibernate in your room, they will check out a tv to watch videos on. If any questions ask me, I literally lived there 5 days a week for almost a year. Love them!!