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trying to decide about going to Rothman


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My daughter is supposed to start at Rothman on the 14th. I made this appointment many weeks ago when we were in a deep hole. Now we are starting to see some light, and I'm wondering if it is "necessary."

 

I guess this is my big question... if we get the infections under control that are causing the OCD symptoms (and also supplement to deal with the genetic mutations) will the OCD go away on its own (and through proper supplementation to address COMT/MTHFR mutations)? Her LLMD suggests that long term OCD causes bad habits with the central nervous system that are hard to undo and ERP is the best way to do that. But what is long term OCD? She's "only" had it now for six months or so, and it is really being helped right now by low dose SSRI (see below).

 

I'd really rather not spend three weeks (or more) in St. Pete this summer. Of course we are all doing things we don't really want to do. But mostly I don't want to "waste" the time and the money if the OCD will eventually go away on its own. But if we're going to do it I'd rather do it during the summer. And we do not have an ERP therapist in our area.

 

We do not have a PANS psychiatrist (none in our area) and we have never seen a neurologist (have an appt on the 16th that took three months to get), and we love and trust our LLMD so we are letting her drive the bus so to speak.

 

She says Rothman is a good idea but I'm no longer feeling it in my gut.

 

Thanks for your advice. I know no one can make this decision but me. And I know no one can tell me for sure that OCD will go away when infections are "healed." I'm just wondering what your experiences have taught you.

 

 

For background, she was diagnosed with PANDAS in early March (after several months of increasing OCD behavior) and started Augmentim and then herxed pretty bad. She has high strep and myco p titers.

 

Switched to zithro, started detoxing and switched to a LLMD who suggests a tick borne illness and possible bartonella (switched to PANS diagnosis). Will begin a pulsing abx protocol in a few weeks but first prescribed low dose Luvox to calm her nervous system down a bit. We are also supplementing with CBD hemp oil. That combo of 37.5 mg luvox and 10 drops hemp twice a day has her OCD symptoms under control to the point that most days of the last few weeks have seemed almost "normal" with only a flare every few days.

 

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Everyone's journey is very individual. Additionally, insurance and ability to pay is part of it. Then, the protocol that is dictated by how you pay and what the docs want to try.

 

I would say, go with your gut. For us, we tried some counseling and may try again. But, we improved in every way shape and form with just debulking the infections, eliminating food and allergy triggers, supplementing with vitamins and minerals, controlling inflammation and then having a plan for dealing with future infections. Also, PenVK prophylaxis since strep is a known trigger for us.

 

Best of luck to you.....you will make the right decision.

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I have mixed feelings about ERP. My dd(9) did 5 months of CBT/ERP at a respected institution with little success. Her diagnosis sounds similar to yours minus the strep- she never had it. High myco p and suspected bartonella. I will say though, that my dd was in a severe exacerbation that lasted about 8 months when she went to therapy- in all honesty, I think it would be more beneficial to her now than it was at the time we did it, but now I'm burnt out on therapy and won't be returning any time soon.

 

Like worrieddadnmom suggested, I would go with your gut. How severe are the symptoms, and how long has she been "better"? Are you going to be kicking yourself for not going when the appointment date goes by and she's in a flare again? I am sitting here at this very moment with dd in a bit of a raging episode, 18 months into treatment, wishing there was more I could do or try..... I've explored every avenue reasonably available to us (and some unreasonable!) so I know I've done what I can to make this different. I don't know how severe your dd's OCD is, or where your path has taken you so far.... You should do what you think is right.

 

Best wishes <3

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We went to Rothman two summers ago, and I have no regrets. The doctor was amazing and we were so glad we went. That said, we'd been dealing with school refusal for 4 years at that point. My son's other PANS symptoms had receded dramatically with Lyme, etc treatment, but the school refusal was not improving at all. We saw that it was now a "habit" so we went for the intensive therapy and it was miraculous for us.

 

I agree with others that you need to follow your gut. If you don't go this summer, it will be there if/when you feel you need it.

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we had almost exactly the same story as above;school refusal, after other ocd had "worn off". USF helped my daughter so much woth that and general social anxiety.

I cannot recommend it enough. Some of these behaviors, though organic in cause are imbedded in habit!

I stayed with my daughter, then 13, for three weeks in spring 2012.

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Rothman/USF is local for us, so we have gone there since the beginning of our kids journey. I will say that the therapy ERP/CBT portion of our treatment protocol has been just as important as everything else.

 

It sounds like your daughter is doing better with the medical treatments, and that's critical to ERP/CBT being successful. You have to be addressing the immune response and inflammation or it won't work as well, we're not just dealing with regular OCD.

 

But your LLMD is correct about OCD causing "bad habits" - for lack of a better phrase. It was explained to us like this by one of the therapists at Rothman - when a person gets injured, they are given prescription pain meds to deal with the pain. Every time they try not to take the pain meds, they feel bad, so they take them, and then feel good. After a while, as the injury heals, they don't really need the pain meds anymore for pain, but they still take them because they will feel "bad" without them, so they continue even though it's not necessary any more (I know this example is simplistic and ignores the chemical dependence issue - but it's just an analogy).

 

Our kids may have a ritual that they do when they feel anxious. They are feeling anxious because of the inflammation caused by the PANDAS, but the ritual makes them feel better. They know that if they don't do the ritual, they feel bad. After the inflammation is gone, they may not feel that anxiety any more as a result of the inflammation, but since they know they felt bad without the ritual, they continue it out of the fear of feeling bad. It sort of becomes a self perpetuating cycle.

 

I will say this - multiple PANDAS specialists - including Rothman - have said based on my medical history I had PANDAS as a kid, and anyone who saw my history and knew anything about this disease would agree. While I have outgrown the improper immune response - no longer have flares with illness - I do have clinically diagnosed OCD. It is my firm belief (and the therapists we've worked with agree) that my OCD is caused more from growing up with these thought processes being my "normal" way of thinking than any traditional cause for OCD. That's part of the reason we are big proponents of the CBT aspect of treatment.

 

This is when the CBT/ERP can be most effective. But she has to want to work at it as well.

 

We have done weekly therapy on an off for years, and I can tell you it has helped even when we are dealing with a new infection/flare. It has given our whole family tools to deal with the OCD even when it's at its worst during a flare.

 

Dr. Storch, who created the intensive CBT program at Rothman recently left Rothman to start a branch of Rogers Memorial in Tampa, and they are doing the same type of program. My 7 and 9 year olds just finished it last week. It was a LOT of hard work, but it was amazing.

 

My son started in a mild exposure flare just after finishing the program, and started to rage because a shower ritual went wrong - he whipped a towel at me and missed (at which point I told him he had to go to his room - our rule when he gets physically aggressive, he can throw things and rage all he wants, but not where he can hurt others) - this normally would've immediately escalated - but instead, he crumpled to the floor crying and said "Mommy, Harvey is bothering me really bad right now, and I'm really frustrated - I need a minute to calm down". (Harvey is what he calls his OCD). Before the CBT program, that wouldn't have happened. It was a HUGE step forward for us.

 

The program doesn't just deal with your daughter's OCD and behaviors, but also your responses to it and how you can help break the cycles as well. It was a great experience for us. And they know their stuff about PANDAS as well.

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Dr. Ramos and Dr. Nadeau also went over from Rothman to Rogers. They are still associated with USF however, so the programs are still somehow interconnected - not sure how. We opted to go for Rogers because my daughter had previously seen Dr. Nadeau on a weekly basis, and she was comfortable with him.

 

It is an entirely out-patient program. They have two levels of treatment, one is the afternoon program (3 hours each day M-F) which is what my kids did, and they also have a full day program as well. They have an eating disorder clinic too. One side is for adults, and the other is for kids - the two areas are separated.

 

You start every day at group check-in, the other kids in the program at the time with their families all come together in a room and go over each individual's homework from the previous night and how it went. At first I wasn't sure how I felt about it, but it ended up being great for my kids to see that there are others that deal with similar issues. The Dr. then assigns tasks to each child/family (yes, depending on the issues and age of the child you are involved!!) to start with, and then they go around and meet individually with each kid/family and guide exposures go over progress, etc... It's really very interactive. Everyone in that office gets involved. My son has a hard time if others don't do things exactly as he wants them to. One of his exposures was to go around the office and ask people to play games with him. Everyone in the office was pre-notified that he may be asking them and given instructions to either cheat, or not follow the rules, or some other type of thing that might trigger my son.

 

I sent you a PM if you want more info, but I thought I'd also share more here incase others are interested. I think the Rothman and Rogers programs are very similar, and I know that there are still several doctors still at Rothman that we liked too.

Edited by airial95
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