Iowadawn Posted September 16, 2012 Report Share Posted September 16, 2012 When you say a residential program- is that like a long term stay place for mentally ill kids/adults? I am at a loss to why these options are even being discussed. These kids can get well! I'm happy to hear your child is doing well enough that you've never considered this an option. For some of us, things are so bad that we feel we cannot take care of our children or keep them safe at home. Its really an individual decision as we all are doing the best we can for our kids. This is our situation. Impulsivity/rage/dangerous to property and others--- 13 yo hopping in the car in a rage grabbing the car keys, getting it in gear--luckily we had pulled the van directly behind. Police popped window-----Aaaa lastest of a long string. We have no choice. We have had to hire retain an attorney. $$$$. There is a lot more to the story that I will share via PM only. Our son's case has been very complicated. It has been a lonnnnggg haul, and seeking placement has not been taken lightly. He will be behind bars if we don't. This place will continue medical treatments. It is probably a year or so stay. This place isn't your grandma's dude ranch. Dawn Link to comment Share on other sites More sharing options...
LaurenK Posted September 17, 2012 Report Share Posted September 17, 2012 (edited) A lot of these problems that these kids have- they have been solved with IVIG, PEX, IV Steroids... If none of that worked, then you move on to more experimental things like the hookworm, looking at gut flora, fecal bacteriotherapy, RTMS- if necessary DBS. My personal opinion is that it's never too late, AND CERTAINLY all of these options should be looked before sending someone away. =( Guess I feel quite strongly about this topic as I have PANDAS and can't imagine how horrible I'd feel if I was sent away as a kid. ESPECIALLY when a couple days of IV steroids brought me completely back. I do hope you find a way out of this. I am sorry for what you are going through. Make sure you look at all of your options carefully! Sometimes things can be so overwhelming that you don't see clearly! Edited September 17, 2012 by LaurenK Link to comment Share on other sites More sharing options...
DeterminedMomVA Posted September 17, 2012 Report Share Posted September 17, 2012 Hi Iowadawn, Hang in there and keep doing what's best for your family and child. This is such a difficult disorder that causes so much suffering for the child and family. I hope this placement is effective and helpful for your child. It's so hard to make decisions with so little support and understanding (and sometimes hindrance) from the system. You're doing a great job...just keeping moving forward. Hugs. Link to comment Share on other sites More sharing options...
dcmom Posted September 17, 2012 Report Share Posted September 17, 2012 Hey Iowadawn- Sometimes the right thing to do for the child, is also the hardest to do as a parent. You are responsible for keeping your son safe, and it sounds like that is what you are doing. Hopefully he will benefit from the treatment the facility offers. I know I have a family member who was sent to a long term treatment facility for drug use, and it turned his entire life around. For sure, it was not easy, but his parents went to the ends of the earth to help him. They have a great relationship with him now (he also was a teen at the time). There are some issues that are too big to be dealt with at home, or at a once per week pscyh visit. Hang in there! Link to comment Share on other sites More sharing options...
PhillyPA Posted September 17, 2012 Report Share Posted September 17, 2012 Iowadawn - I get it. I totally get it. You have to do what you have to do. You have my support and admiration. You are so strong. Stay strong. Link to comment Share on other sites More sharing options...
Iowadawn Posted September 17, 2012 Report Share Posted September 17, 2012 I certainly had no intention to hijack the topic. I so very much appreciate the encouragement. This is very hard. Dawn Link to comment Share on other sites More sharing options...
PowPow Posted September 17, 2012 Report Share Posted September 17, 2012 we have pm'd before, Dawn. As someone who has been there, done that.. this is really hard, but I think you are doing the best you can right now with this situation. I do not know the facility you are looking at, but I wanted to say publicly that this is really brave decision for your son. Most PANDAS parents will never ever deal with a kid this severe, but when you do, sending your kids to a place like this is not shipping them off or giving up. It is just another part of their healing. Thinking of you. For those of you who can not figure out what these facilities could do for our kids, they offer safety, security 24/7 & intensive therapy of every kind all waking hours. Like PANDAS, I would not wish this decision on my worst enemy. However, perhaps I can offer some hope and let you know we survived, our child did and is so much better for it. Link to comment Share on other sites More sharing options...
EAMom Posted September 18, 2012 Report Share Posted September 18, 2012 (edited) rogers in wisconsin is an excellent residential ocd/anxiety program. they do not medically treat PANS they wil,l continue medications your child is on and they will work hard at getting meds decreased and working well! excellent facility. feel free to pm me for more info. My understanding is that the IOCDF is working to encourage Rogers to treat PANS/PANDAS medically. So, hopefully things will change... It does bum me out that parents have to choose between the safety/security of a residential treatment program and treating PANDAS medically. They should be able to have both! Edited September 18, 2012 by EAMom Link to comment Share on other sites More sharing options...
PowPow Posted September 18, 2012 Report Share Posted September 18, 2012 (edited) this would be answer to many prayers. my child's psychiatrist and primary therapist were excellent, I cannot imagine how helpful it would have been to have her PANS treatment there. She may have gotten well years ago, had that been an option. If parents of Roger's "grads"can be of any assistance..fill me in, EAmom!! Edited September 18, 2012 by PowPow Link to comment Share on other sites More sharing options...
EAMom Posted September 18, 2012 Report Share Posted September 18, 2012 (edited) this would be answer to many prayers. my child's psychiatrist and primary therapist were excellent, I cannot imagine how helpful it would have been to have her PANS treatment there. She may have gotten well years ago, had that been an option. If parents of Roger's "grads"can be of any assistance..fill me in, EAmom!! This is on IOCDF's FB page (along with a picture of certain PANDAS folk: eg Swedo, Murphy, Jenike, Sue Dailey...in front of Rogers): "Last week, members of the IOCDF Scientific and Clinical Advisory Board and staff from the IOCDF met with Rogers Memorial Hospital to discuss the latest information about PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome). This meeting was part of the IOCDF's overall efforts to promote the mental health and wellbeing of kids and teens visit www.ocdinkids.org " Edited September 18, 2012 by EAMom Link to comment Share on other sites More sharing options...
PowPow Posted September 18, 2012 Report Share Posted September 18, 2012 man, I knew I should not have gotten off FB! thanks.. Link to comment Share on other sites More sharing options...
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