Headed to Rothman Monday!

[laure]

We are headed to Rothman on Monday for the February school break (18th - 22nd), staying at the Ronald McDonald House.

Dd 12 scheduled for 5 days of intensive work with Dr.Rahman. Diagnosis is OCD caused by PANDAS July 2010, Igenex positive for lyme, probably since age 5. High lead, tungsten, low thyroid. Just finishing 4 months of IV abx. IVIG in August.

 

Is there any advice out there about information we should be bringing along, labs, etc? They didn't send us anything at all in the way of preparation or what to expect.

Will they do medical work when we are there or should we request that?

 

Will anyone else be there?

 

Fingers crossed that we will make an inch of progress!

[Dedee]

Congrats, you are in for a great experience. Dr. Rahman is wonderful. Unless you also have an appointment with one of the medical doctors (Dr. Murphy or one of her crew) you will not get a medical work up. The CBT program there is the best around. However, if you are looking for assistance for lyme treatment, you should probably look into finding a good LLMD. USF is not known for it's lyme protocol. Don't get me wrong, we love Dr. Murphy and have been to her several times with our kids. We have also used their CBT program with great success with our kids. But when we started with lyme treatment for our daughter, we found an LLMD. Certain Centers are highly focused and highly successful in specific areas. USF / Rothman is very successful in their CBT / ERP program. Hands down the best there is! Dr. Murphy is also an excellent PANDAS / PANS specialist. However, when you start talking about lyme and co-infections, that's another highly specialized area, so you have to start looking for other places that put their resources only in that field. It's a shame you have to travel around to get the help you need but it is reality. Enjoy your trip south. I'm sure you will find it extremely helpful.

 

Dedee

[Kathy4Him]

Laure...If you have time and the weather permits, spend some time walking by the marina, just a few blocks from Rothman. Such a lovely way to relieve stress. I even rented a bike for two and my DS and I went for a ride by the water. You can park down there, meters so bring change.

[stacyH]

We are right behind you with my son(13) starting at the Rothman center on Feb 25 for 3 weeks. Any info/advice you can give once you get there would be wonderful. Good luck! Stacy

[mama2alex]

We are going out there the first 3 weeks of April, unless we see some kind of miracle on the school refusal front. We are also scheduled with Dr. Rahman. We are just going for CBT, not medical treatment. That has to be requested and scheduled separately, so if you need that, I would call asap and see if they can fit you in during your visit. We have good medical doctors here, but have not found a great therapist who can help us get over this mountain. There are a number of past threads about Rothman with good detailed info - have you looked at those?

[dcmom]

LOVE Dr Rahman!!!!

 

You will learn a lot- he will get your child back on track!

[airial95]

I'm local - so if you have any questions or need anything - feel free to PM me. I'll be travelling Mon-Tues, but will be around the rest of the week.

 

Sandra

[airial95]

Also - I don't know when you're heading down - but the Tampa Bay Rays are having a fan fest at the Trop on Saturday - it's also within walking distance of the Rothman. The new Dali mueseum is also not far from there in downtown and is beautiful.

[michiganpandas]

Love Dr. Rahman....Dali museum is free for 1 visit if staying at RMH..so is sunken gardens.

Make sure to try to see dolphins at the Pier around 5:30 each night.

 

We were not cured after our visit...but, gained valuable skills. My daughter was afraid of thowing up (would talk about being scared approx. 100 times a day...I counted!)....never hardly brings it up now...fear is still there, but it's better....but, when other ocd things pop up (now scared of concussions)...all I have to say is..."well, you better get this ocd in check because I don't even want to think about how Dr. Rahman would do exposures for concussions!) We would go back for a refresher, but as of right now it's pretty cool that we don't need to

[mama2alex]

....but, when other ocd things pop up (now scared of concussions)...all I have to say is..."well, you better get this ocd in check because I don't even want to think about how Dr. Rahman would do exposures for concussions!)

 

This gave me a good laugh!

[laure]

Thanks for all the great tips! We did not schedule for medical (which is PANDAS specific no lyme specific at Rothman, from what I understand), so I called Friday and they said that Dr. Storch can make that happen if he thinks it is warranted. My Dd has made progress, in the last 6 months, although we had to move to a different town to make that happen. She has been treated with IV abx for 4 1/2 months now and lyme for 2 years. She is much better than initial PANDAS explosion in July 2010, but her symptoms are all OCD, and we are now hoping that her rituals are more habit than infection-based. Her LLMD is not so sure though, so fingers crossed. I do wonder if underlying strep (in tonsils, other organs, etc. that are not being hit by abx) could still be causing her OCD. We have seen complete reversal earlier in treatment, when new combinations of abx were tried. Nothing like that in the past 1 1/2 years though.

I'll post during the week. We fly tonight, then hit it hard for 5 days - praying...

[mdmom]

Good luck at Rothman. We were there in Dec for 3 weeks. Best thing by far that we've done for our son. Dr. R is the best. He's so good that we have decided not to find a local therapist and instead go back to Dr. R for OCD "tune-ups" when needed. It's worth the travel expense.

 

Keep us posted!