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Wilma,

I am too tired and mind numb to say anything useful right now- except I have had no real luck with any psych doc (even one who believes in PANDAS)- they really cannot do much. Risperdal did help my child, I think I remember it did not hellp yours-- but really, they need medical treamtent and all psych meds can do (in my opinion) is calm them enough to get it. The only one who has really been helpful to us is Dr L. Have not seen any of the others.

can you remind us how old she is?

 

Is she supposed to get IVIg soon?

Did you keep up the steroids?

i know this is a nightmare.

 

hang in there.

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Wilma

so sorry to read of the ongoing crisis but just wanted to mention that if you have concern about hospitalization, and unless there is a life or death crisis, avoid it!

 

My son had psychotic reactions to prescription meds, and sadly, when we rushed him to the ER, the hospital just pumped him full of more!!! making things much much worse. We refused to agree to their pushing to move him to the psych ward and I am so thankful for that!

 

Thank God we eventually found a caring psych who realized that the meds were really making things worse and helped wean him off and on to more natural treatments, which led to remarkable improvement

 

My son is not PANDAS (he is PITAND) so I realize not the same issues....but just wanted to urge you to follow your mommy instinct for your child

 

Praying things will get better

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Contact Dr. Leckman at Yale. He is (I believe) a psychiatrist) nationally known at Yale in Tourettes. He is heading up the IVIG trial for NIMH. He might be able to talk to them. Bring the docs literature, like Dr. Tanya Murphy's.

 

My DS was also treated with psychotropic meds before we knew he had PANDAS. At best, it took away his appetite. At worst, he became horribly violent.

 

Don't try to fight this yourself. I'm glad that Dr. B. is helping you, and I also think that that you should get hold of psychiatrists on the forum who treat/know a lot about PANDAS and the use of psychotropic meds. You need all the help you can get from other docs talking to your docs. They listen better.

 

Also, there was a study at Columbia 2 years ago about strep antibodies in mice causing OCD and tics. Get that study and show them THEIR OWN RESEARCH!

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So sorry you're dealing with all of this, Wilma! I too, would want to know what the plan is. Who would be her attending while there? I'd call to ask that question and then ask their position on PANDAS. I do this routinely now with any new doc. I've called psych hospitals as well and asked the same question and kept her at home safely b/c they did not know a thing about it. IF you ever feel she (or you) is unsafe at home (including nights when you are asleep and she is not), I would take her straight to the ER for immediate help.

 

I can't remember where you live.... do you still have my email address at home? Easier to reach me that way... I'll pm it to you. We do have a psych on our team (we've seen him twice for this in the last 2-3 years) who does believe in PANDAS and last time we saw him (although she was still having explosive rages at the time and the neuro had just pulled her off some psych meds), he added.... nothing. Prayers for you and her as you work through this.

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Wilma,

I am so sorry for what you are going through. I just wanted to add this in case you were not aware. Even if you voluntarily admit your child to a psychiatric facility, they can keep her against your wishes if you try to take her out and they think she is a danger to herself and/or others. If that occured, they would get a TDO (temporary detaining order) from a magistrate and be able to keep her against your wishes.

 

I worked in a pysch hospital with children and adolescents and I definitely saw children/teens who became violent with psych meds- this was in my PRE PANDAS years, so I did not know why, but I am 100% sure these kids had PANDAS in hindsight. Unless the drs are very aware of PANDAS and the fact that psych meds usually cause bad reactions in PANDAS kids, I would be extremely hesitant to hospitalize her. They would most likely continue with the psych meds, switching them, trying new ones or stronger ones, possibly causing her to be more violent and then you have the possibility of them using restaints if she becomes violent.

 

I am not trying to scare you, just want to make sure you know of the possibilities.

 

Hang in there!

Colleen

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Wilma:

 

We went the hospital route 3 years ago when my son pulled a knife on himself, at the urging of his therapist. We had to call the police to get him there. It was so incredibly traumatic for all of us. The docs at the hospital knew about PANDAS, but had no idea about treating it and did not. My son cried for 7 days straight from separation anxiety, and came home like a zombie from the ramped up dose of Risperdal. Two good things came out of that week, the first being that I got a few days of respite after months and months of exacerbation. The other was that from there on out, no situation was a scary as the hospital for my son, and he was willing to work hard on his ERP/CBT just to avoid the hospital. It got him back into school after 3 months of refusal. Whenever anything seemed hard or scary, we'd say - "It's not as hard and scary as the hospital. You did that, you can definitely do THIS". That being said, when we were faced with a similar severe exacerbation last year, we opted NOT to hospitalize him. I realized that he was medically sick, and no amount of therapy or psych meds were going to change that at that point. What he needed was medical treatment and understanding that this was something happening to him - not somehting he was doing. THe medical treatment was finally what got him out of the crisis. So, I guess what I'm saying is I've been in your position and made both choices. Neither is easy. I agree with brown eyes - what would be the goal? To keep her safe? To give you respite? To stabilize her with psych meds while they can observe her? To treat her PANDAS? Arre they willing to consult with your PANDAS doc? Find out, and see if this matches with your goals.

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When my son is having trouble his sleep is affected. I used to give him clondine at night to get him to sleep so that he could attend school. Since he has started pandas treatment, I just let it run its course. It's rough but he will get back to his norm - 12 hrs 1am-1pm. He's always been a long sleeper - 12 hours - except when sick.

 

I think you need to find a doctor and then a hospital. I would call NIH and get Swedo's opinion for a panda's psy. I called and they gave me a couple of names of Panda's doctors and a couple were psys. I didn't use them and decided to go to an immunologist instead because of insurance and because we have been to too many psys and neuros. I'm seeing some improvement - waxing and waning - and am still hopeful.

 

Hope things calm down and you find an answer.

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