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Pandasmex

Inpatient program at Rogers memorial hospital

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Hello

 

After 19 months, PEX and five IVIG with no improvement in severe OCD, we want to send our 13 y/o son to Rogers hospital in Wisconsin. We knew them in the IOCDF last year. They have a very good inpatient program for OCD kids.

 

Has anyone tried this? Please, we need some advice...

 

Elva and Gabriel

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We were also at a crossroads when 6 IVIGs did not bring us sustained success. Have you considered looking at other infections? LLM gives a great summary of a variety of bloodwork that you can run to see if there is a possibility that chronic infection is an issue with your son. After all of the IVIG's and a year and a half of constant antibiotics, we found that our son still had mycoplasma, bartonella, lyme disease and babesia. He is sooooo much better now that we are treating all of the infections. PM me if you have any questions.

 

Elizabeth

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I don't have any personal experiences. My impression is that Rogers has a good reputation in the OCD community. But my impression is that they view treatment strictly from a therapy+pharmaceutical viewpoint. I don't know that they'd work with you on a bio-medical approach for Pandas. If you have tried psychotropics in the past with positive results, the in-patient therapy may be beneficial. But if you don't want to use psychotropics or have had a bad experience in the past, you may want to ask some questions before admitting your son. I don't know, but I suspect you'd be waiving certain rights over medication protocols and compliance issues. I suspect they face the need to force patients to take medications, so if you go this route, make sure you understand what you will and won't be able to do ahead of time.

 

If you do feel there's an infection behind your son's condition, there are some blood tests that can give you some sort of support for this, if you haven't done them already.

 

C3d immune complex shows if the body's immune compliment system has been activated. It can't tell you what sort of infection is there, but a high result will show that the body is fighting something.

 

C3a and C4a compliments are other immune compliement measurements that are most often elevated as a result of lyme or mold.

 

CD57 is a measurement of natural killer cells. A low number can suggest a chronic infection may be suppressing the immune system. It is often used in the lyme community as a way to see how robust the immune system is.

 

There are other tests as well. It depends on what sort of infection or environmental issue may be at play. But the above are available by most commercial labs and are generally covered by insurance. The C3a and C4a sometimes require special handling kits because often they get sent out to a specialty lab as a sub-contractor. So if you go that route, call the lab ahead of time. They may need a day or two to order the kit before you go there for the blood draw.

 

Only you can weigh the pros and cons. I know you just want to bring your child and family relief. And it's hard to make informed, rational choices when things are so severe. So no one can tell you what the "right" answer is for you. But I would ask as many questions (including worst case scenario questions) as you can ahead of time so you can make the best decision possible.

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I think C3d is only an indication of the state of the immune system. I had a hard time finding much on it when it was first run on my kids - mostly got hits on Rheumatoid Arthritis. It isn't a definitive test for anything. It's just one of those helpful measurements to put into a bigger context - like when you feel your child's forehead when they say they don't feel well. You use the "mom-eter" as my kids call it, as a first glance to see if something's brewing. Then take out the them-ometer to see just how high the fever is.

 

Why I suggest it so often is that for my kids, it's been a good indicator of general health. When we started with DR B, DS was in the 50s and DD was in the 20s (above 8 is high). It told us their immune systems were working overtime - on something....

 

After IVIG, DS remained in the 50s. Dr B agreed that it should have gone down. That it remained high suggested his body was still fighting something (or was still fighting itself I suppose). That, along with his bad response to IVIG, made us consider - and find - lyme.

 

For DD, who has never been clear cut anything (could argue for Pandas, could argue for lyme), her C3d was in the 20s then climbed to the 50s then to the 90s over the course of a year. It gave me the confidence (along with CamK and very high anti-lysogangliosides and elevated C3a) that her OCD was infection-based. She's been on combo abx for 10 months and he C3d is now in the 20s. That measurement corresponds with her overall improvement. So it's not a diagnostic tool, but it gives me a way to track general immune activation. Not sure that's what an immunologist would use it for (we see an LLMD now) but I use it as a "mom-meter". And it's covered by insurance - go figure!

 

That your DS was normal doesn't mean he doesn't have Pandas. Only that his immune complement system isn't overly activated. At least, that's my understanding. Certainly something to discuss at your next appt. with someone who actually knows this stuff!

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Rogers Memorial does have a good reputation and I considered it for my son last summer. I wish I would have known about it when my son was very sick last Spring. When I called I was told that most stays are (I believe) about 4-6 weeks and also that the child had to attend voluntarily. I was also told there was a 2 month wait at that time. My son improved and I no longer considered it.

 

If you do end up using this facility, I would very much appreciate it if you could ether post about your experience or send me a pm. I would like to know more about it in case we ever need it in the future.

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Thank you.....Very useful comments.

 

We just made some blood analysis: Lyme, circulating immune complexes , thyroid profile, borrelia, Aso titers, etc. Now after IVIG all normal. Ferritin and vitamin D very low. He's taking this supplements plus vitamin B. He's also taking motrin and penicillin injected but we want to change it to augmentin again.

 

We will go first to Rogers and good idea about ALL the necessary questions.

 

Elva

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LLM - Thanks - as always for your very thorough answer - very much appreciated.

 

Pandasmex - I hope your sons condition improves. I have looked into Roger's Memorial in case we have to go that route in the future. We are going to try ivig first. I will keep your family and son in my prayers.

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Hawks - I hope we are doing the right thing sending him to Rogers.

Me and DH will go prior to sending him to know the place and make the arrangements. He is in a better physical condition though We cannot live with OCD any more. It's horrible....my son's life is under OCD control.

Thanks for your prayers, we really need them.

Keep you posted!

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We had our son at Rogers in 2009; it was the worst decision I've ever made to send him there. Their OCD treatment program is well regarded, but when he got home, we found that it was the graduate students writing the daily reports, often repeating verbatim what other patients' heirarchies were on my son's chart. When he would tell me about things that happened; he had to use the ward phone because his cell phone had very poor reception, I usually ended up having to ask to speak to someone there.

 

The last straw was when I'd spent $45 to overnight ship a "goodie box from home" (filled with paper to make airplanes with, puzzles, cards, etc) and it was to have been there on Tuesday. By Friday, when he still hadn't gotten it, I called and found out that one of the grad students made the decision that because a few of the kids had misbehaved, ALL of them were not going to get their mail for the week. I was furious, told the doctor and was met with "well, if they made that decision on the ward, I can't really speak to that."

 

Three months after the discharge from Rogers my son was hospitalized again for a month; where they finally diagnosed PDD-NOS. His OCD symptoms declined after 3 days in the second hospitalization; just as they did at Rogers (we were all astounded, including the doctors, that he was at 75% of achieving his heirarchies after only 10 days at Rogers. That alone should have been a red flag to the staff at Rogers, and while we asked about how that was possible, it was waived without discussion and they kept him for 12 weeks.) Upon his return home, his regular therapist started seeing regression and when Rogers asked the therapist how my son was doing, the therapist wrote honestly that their treatment had no benefit and they ignored it. Our pediatrician asked for a discharge report (not the handwritten one from the grad students) and never received it. The second hospital asked for their paperwork and also did not get it.

 

I know other families have had good luck with Rogers; we unfortunately were not one of them. About a year after his discharge, they contacted us via a fundraising letter and I called them and told them about our experience. The woman on the other end of the phone was in tears when I told her some of the things that happened and encouraged me to put it in writing and send it to their hospital management. I did. Never got a response.

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I don't have any personal experience with Rogers, but I have heard others report success stories there. As to their approach to PANDAS - Dr. Reimann is there, and he is a well known name associated with therapy specifically for PANDAS. Him and Dr. Storch (currently at Rothman at USF) have collaborated specifically on therapy with PANDAS.

 

On that note - we have extensive experience with Dr. Storch from USF/Rothman, and he is leaving there at the end of this month to open a Rogers in Tampa, FL to expand their program down here. Storch DOES support abx and other immune treatments for the treatment of PANDAS in conjunction with therapy (and psych meds in extreme cases where self harm/harm to others may be an issue). Many have reported good things about the USF intensive program that he runs - but that is outpatient. We have had good experiences with his group and regular therapy for both of my PANDAS for years now.

 

That all being said - what starbucksmom has said is unfortunately a broader issue - how the graduate assistants and fellows who do a lot of the day to day work are supervised/trained/etc... Even at Rothman - which is a PANDAS research facility - folks have encountered the occasional grad assistant/fellow that either dismisses PANDAS, pushes for psych meds prematurely, etc... I'm beginning to think that it's an unfortunate problem in many places.

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Well said, Airial. We haven't been to Rogers, either, but we did -- in his darkest days -- enroll DS in a partial outpatient program at a local hospital psych unit; it came highly recommended by our psych at the time and is a well-regarded medical institution.

 

But we had an experience similar to Starbucksmom. Never mind PANDAS which, when we initially enrolled him, we hadn't a clue was part of the picture. The trouble was with the staff, the miscommunication among all the participants, from the intake personnel to the psych fellow to the head psych to the "teacher" they supposedly had on staff to help the kids stay current with school work, even though they were attending the program (on an outpatient basis) all day, 5 days per week. We eventually came to the conclusion that we had been "sold." That they obtained pre-approval from our insurance company for DS's enrollment, and that was all they needed in order to "shoehorn" him into their "program" which was never, ever right for him. And the rate at which they "adjusted" his meds . . . both in terms of actual substances and dosages . . . was appalling.

 

As a result, I remain wary of all of these "programs," however well established. In the end, the program can only be as good as its staffing, and just because a Dr. Storch may be at the top rung of the ladder (whom I adore, by the way), that doesn't necessarily translate all the way down to our kids' direct caregivers, especially on an inpatient basis during which you have nominal interaction with your own kid so that you can truly assess how they're responding to the treatment/techniques they're being offered.

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airial- do you know when the new program is expected to open? How far away from the other location(USF)? Are any of the main doctors leaving for the new program? We saw Dr. Rahman last summer and absolutely loved him. I am seriously considering the newer, more intensive program, possibly in late fall.

 

starbucksmom- want to thank you for sharing your experience!

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I know from my experience with my DD that if the immune system is really activated, there's not much that can be done about the OCD. Beth Alison Maloney made some comments about that too in one of her books. You have to get the immune system to a calmer state before the child can use the CBT tools. My DD is great at CBT, but when the grass pollen is super high the OCD just drives her crazy, and nothing works. Before you invest all the time and money, I would make sure you have dealt with the underlying infection(s) or allergies as best you can.

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I have never experienced therapy as being beneficial for DS. When he was in the throws of PANDAS, it made him angry and rageful. The only thing that has helped is getting to the infection. For DS, that has turned out to be Lyme. Treatment for PANDAS made things better but never got him where he is today.

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