5day Intensive OCD Clinic at Mayo

[hawks]

Has anyone had experience with the OCD Clinic at MAYO- Dr. Stephen Whiteside? It is an intensive 5 day program for children thru 18. Just wondering if they recognize and treat kids with PANDAS.

[dcmom]

I didn't know anything about...

 

We are heading to Tampa Florida this summer for a three week ocd intensive. Dr Eric Storch works with Dr Tanya Murphy. They are well versed in pandas and ocd. We will be staying at the Ronald McDonald house, and having the therapy covered by insurance. We are doing a couple days at Disney after, as a reward!

 

Something you could look into, if you are looking for intensive therapy.....

[Worried_Dad]

Don't know about the OCD Clinic specifically. Do know that we had our ds scheduled (tentatively) for a visit to Mayo when things were really desperate several years ago. Then, while on the phone with the scheduling nurse, she informed me that the pediatric neurologist we were seeing "does not believe PANDAS is a useful diagnosis" and would only treat headache and tics. She said the psychology dept would separately address issues like OCD, sep anxiety, emotional lability, etc.

 

At that point, we decided this "disjointed" approach wasn't worth the time, cost, and hassle, especially since (while waiting for the Mayo acceptance) we had started on high-dose augmentin XR and were seeing dramatic progress.

 

I love Mayo in general. Great rep here in the Midwest. But that "not a useful diagnosis, separate docs for separate symptoms" approach really made us groan. Hope you have better luck!

[Dedee]

Same for us......We are headed to Florida for the three week program. Going down in July. We are actually taking two of our PANDAS kids although we are mainly worried about our daughter who is in flare at the present. Dr. Storch / Dr. Murphy have a wonderful program with great documented outcomes. I am taking off most of July and my husband is staying home to work. I'm not thinking it will be much of a vacation with two PANDAS kids in tow and no spouse for support, but praying for some sort of help dealing with these issues.

[melanie]

CAN you forward the information on the clinic? What ages are treated ?

[dcmom]

Dedee- When will you be there? We arrive August 1st.

[hawks]

Thank you for the replies. Here is a link with some general information - http://www.mayoclinic.org/ocd/children.html.

 

Worried Dad I agree when I called and talked to the receptionist in the psych. department she hadn't heard of PANDAS - not a good sign. My gut is to seek therpy for DS15 from someone who recognizes PANDAS - that is just really hard to find. May need to consider the docs mentioned above. Would have been a quick 4 hour drive to mayo - bummer. I do have the docs email at mayo - can't hurt to send an email his way to see if he treats PANDAS.

 

Hope those going to Florida will get much needed results. I'll send prayers your way. Thanks again for the replies.

[Dedee]

We go July 9th and leave the 31st. We will just miss you. The kids school starts back the first week of August. We rented a condo about 10 minutes away from the hospital. We have it for all of July. I'm thinking about going down a few days early with my sisters for a little R&R before all the chaos starts. Not sure if that is going to work or not though. My kids get really crazy when they are away from me. Still trying to figure that one out. Probably just a dream......

[Iowadawn]

I have not had good vibes PANDAS from Mayo--unless it is changing. Isn't this Kurlan Kountry??

 

Dawn

[dcmom]

Dedee-

 

Do you mind giving me an idea of the cost of the condo? And where you found the rental?

 

Thx

 

Eileen

[dcmom]

Hawks-

 

We have seen three therapists for my pandas girls.

 

Our first, whom we loved and who was very helpful, was not familiar with pandas. She did treat children with ocd and anxiety. She was VERY open minded about pandas, and clearly saw the difference in normal ocd and pandas (severet and sudden-ness of onset, also, amazing improvement with medical intervention).

 

Our second, was basically a pandas non believer, and we wasted a lot of the first few meetings discussing psych meds etc. She also had a blame the victim attitude

BTW, I am not opposed to psych meds, and we were considering at the time, but she was a psychologist, and we were there for therapy.

 

Our third, was very knowledgeable about pandas. It was SO great to have someone I did not have to bring up to speed, and who actually "got it". Unfortunately, she is about 1.5 hours away- just not practical.

 

This is why we are trying FL.

[Dedee]

Eileen,

 

I have all the info at my office. I will PM you tomorrow.

 

Dedee

[MomWithOCDSon]

Deedee and DCMom --

 

I am green with envy over you guys going to FL for the Storch/Murphy program. I've heard nothing but great things about that intensive, and having met Dr. Storch at the IOCDF conference last year, hearing him speak and reading many of his papers, I find he and his colleagues SO impressive in every way: knowledgable, compassionate, experienced, etc.

 

Please drop a fresh topic when you get back and fill us in. We have a very good therapist and psychiatrist team here and pay pretty hefty prices for weekly therapy during the "ramped up" times and somewhat less regular sessions during the tamer periods, so I'm not sure our DS would have a whole lot to gain from the intensive or that we could afford it, either. But I am very curious about it and hold it in reserve, myself, for the "if we can't get this under control here, then . . . . " sort of peace of mind.

 

Travel safely and good luck!

[lynn]

I think Mayo was one of the participants in the 5 day intensive clinical trial that DS participated in this Spring. If that is the case, we didn't have any problem with PANDAS or non pandas because we didn't discuss it--our aim was OCD coping skills and we got a lot of them. No one mentioned drugs. Problem was that the considerable gains we made didn't last. The research was set up that no additional counseling from Fordham (where we took the intensive) was allowed for 3 months and during that 3 months we had a bad exacerbation. Don't know if having follow-up would have helped or whether the exacerbation would have blown through the CBT tools anyway, but we did feel a bit at sea. Now that the exacerbation is lifting, we see signs that the CBT stuff is still there.

[Joan Pandas Mom]

We have gone to USF, Dr. Storch's program, years ago. They are excellent. It was before we were realized it was PANDAS so unfortunately the gains did not sustain for more than a month. Good luck. I'm sure you will see big results. I think the key is continuing with ERP daily (at least and hour a day) when you get home too. I noticed on the OCD Foundation website that Dr. Aldea is in Florida too. She use to be at USF but must have branched out on her own. If you can't get into USF, Dr. Aldea is great too. Best wishes for much success.

 

Lynn, I don't know anything about Mayo, but 5 days seems too short of a time frame. We were always told we could do 5 days as a booster after completing a 3 week course. Maybe it depends on how severe the symptoms are.