any info on Rodgers in WI or Franciscan Hosp in MA

[PowPow]

We will be persuing this soon at the direction of our PANDAS doc-as our child refuses (vehemently) all medical care & the IVIG 7 weeks ago has seemingly not helped.

 

If you know anything about either of these facilities or any other facility for a 13 yo girl who will be going against OCD's bettter oppositional disorder (literally has to to do the opposite of whatever we say- though reverse psychology does not work- go figure!) and extreme anxiety-- like a PTSD variety.

 

I would prefer east coast- but I just want my kid better! any info?

[MomWithOCDSon]

We've not been there, but Rogers in Oconomowoc, Wisconsin has an excellent reputation. The IOCDF speaks highly of Rogers, as well, and we know several families whose teenagers and young adults have been helped there. It's always been "in reserve" for our family, should we need it.

 

All the best to you!

[Worried_Dad]

We considered trying Rogers as well several years ago - our local psychologist raved about it, as did some folks on the OCD forum here. Ended up not going, but one thing concerned me: when I spoke with them, they indicated that a participant in their intensive OCD program had to be voluntary (on-board and willing to actively take part). At the time, our ds was so completely overwhelmed with PANDAS symptoms that we never would have gotten him to "volunteer" for this.

 

If your dd is refusing medical care, this could make it tough to get in. I imagine they'll make special accommodations where possible, but you'd want to talk to them ahead of time to make sure this is covered.

 

Also, not sure how much (if any) of this type of program is covered by most insurance plans? If your PANDAS doc or psych will go to bat for you, maybe that won't be an issue....

[philamom]

I've been in touch with a family whose daughter was in Rogers for inpatient treatment. They were very happy with her treatment. They worked with a Psychiatrist (Dr. Stephanie Eken) who understood PANDAS. I think they also did some of the family therapy via webcam. It's been a while since we spoke, but I would be happy to reach out to her if you would be interested. I don't believe she is on the forum.

Melinda

[PowPow]

Thanks for your responses.

pandas16: my daughter DID take riluzole (for glutamate) for only about a week last winter & I really thought I saw improvement-- but she refuses to take any meds now. We are unable to "hide" it- as she knows and will refuse to eat I do think glutmate might be key here for her (and probably others) As far as other infection-- she did have lyme & babesia that was extensively treated by an excellent LLMD, as last labs that were drawn (over 1 year ago) were cleared as best as the doc could tell at that point. Her medical refusal includes nay docs, labs, meds-- who knows what is going on in her. I really want her tested for anti- NMDA receptor issues, but our neurologist thinks she would be much physically worse. She has chorea, tics and uncontrollable movements, but they seem to be better, not 100% but better over the past few months. Both of my oldest daughters developed PANDAS at 10 & 1/2- so I am wondering if that is more than coincidence - maybe something else is going on here in their developing bodies causing this? I am watching my next daughter, now 10, like a HAWK!

 

philamom- I think I am already in contact with the person you mentioned. Rogers came very well regarded by that family. I am going to call her tomorrow for some more help.

 

WorriedDad- so how did they suggest you get someone who refuses help, help? this is such a problem at many places. If the child, with PANDAS, AGREED to help, I probably would not be in the severe situation we are in now!

[danddd]

Hi, I am so sorry your daughter is going through this. About a year an a half ago when my daughter was in severe exacerbation, her psychiatrist wanted her to go to franciscans, and it was all set up. He said the staff was wonderful, and he would trust them with his own kids. I cancelled 2 hours before we were to take her. Parents are only allowed during "visiting hours". My daughter was 8 at the time and had never slept without me, her dad, or her grandpartents. Never had a sleepover. I could not imagine her, with her severe fears, and anxiety having to go to sleep in a strange place with strange people. When I voiced my concern, they were very short, you know "rules are rules". (maybe i should not say this, but to me it was like...lets see how long it takes for the "breakdown". then they can see what they are up against and try meds to help) However, franciscans is known for being a good place, you just have to look carefully at the rules, and schedules, and see if it would be a good fit.

 

on another note : after i refused franciscan's, they found another psych hosp (short term eval) where I could stay the whole time. I should not have taken her, we arrived at 2am, and i spent the night awake thinking of how i could explain it was not right for her. i was not allowed to take her home without the approval of the doc, which i had to wait for as he was doing his rounds in the morning. nightmare, but he agreed with me, it was not the right place, there were no othere kids like her there. the other kids scared her terribly. (she still has bad thoughts about it occasionally. it was like one insanely massive exposure to all her fears. seriously there were so many wierd cooincidinces i cant explain). if only i had known, i think you can leave "against medical advice", you just have to sign the papers for it.

 

after that we persued ivig, (and prophylactic abx) it has helped a lot, not magic though. she had a second 7 months later, and you never know we may do a third someday.

i dont mean to be negative, but you have to really examine the facility, and there routines to see what is right. i went in blind, thinking maybe they would even advocate for ivig (honestly how stupid of me?) BUT if it is a good fit, it could be great opportunity.

good luck

Edited July 10, 2011 by danddd

[PowPow]

danddd- I pm'd you..

 

also, how did you find out the schedules & rules? do you remember any specifics?

thank you so much for responding.

[sf_mom]

I'm sure you know this already from your LLMD. BUT, for others that may not know..... Lyme hinds on a particular cell (sorry forgot the name of the cell) in the central nervous system and often when relapses occur the bugs head straight for the brain. Relapses are typically neuropsych symptoms only and more severe then when original diagnoses of Lyme was made. Hopefully, you are in contact with your LLMD about her current condition to reconsider relapse especially since the hdIVIG for PANDAS has been unhelpful.

 

Wishing you all the best as you struggle to get your daughter well.

 

-Wendy

[PowPow]

SFMOM- Thank you so much for your comment. I am aware of what you mentioned. that is exactly what her LLMD HAD told me (ages ago, that IF we did IVIG, the timing of restarting antibiotics was critical. Of course, our daughter will not take any meds. So I do not know what to do! Do you think (if this regression is related to a lyme complication) it will subside as the IVIG wears off? We do not see the LLMD anymore (only because my child will not see anyone!) so I do not have that angle on things available to me. It has been over a year since we saw that doctor.

[sf_mom]

Some kids with Lyme do have a negative reaction to the hdIVIG... Think of it as potentially a huge herx that could last weeks and once the donor antibodies wear off the individual does typically improve. However, if she is not on any antibiotics and it is Lyme/co-infections cropping back up she will eventually deteriorate again if not treated. My girlfriend also has issues with her son who has PANDAS/Lyme with medication refusal associated with herx's... She begs, barrows, pleads, threatens (no sleep overs), etc.... once he starts feeling better he complies with medication.

 

Perhaps if you could get in contact with your LLMD.. explain the situation he would consider a pic line to get through this tough hurdle.

 

So sorry she is doing so poorly. I sympathize with your situation.

 

-Wendy