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I'm new here. My daughter's been treated for PANDAS for a couple of months. She's on Aug and Azith and just finished a Prednisone taper for a flare due to a sinus infection. A week and a half ago she started feeling awful and after describing her symptoms, the nurse thought is was possibly the flu. Since then she's left the house twice and both times got physically panicky. She says her body gets panicky and tight and she gets physical pain from that and she's scared of the pain.

 

Well, we have a drs appt today to see what he can do, but she refuses to leave the house. My husband thinks she needs to see a psychiatrist ASAP but our past attempts at psych meds made things worse, so I'm trying to find someone who's familiar with PANDAS.

 

So, how can I calm her enough to go to the dr (he's an hour away)?

 

How can I find an appropriate psychiatrist and psychologist nearby? We live in Queens, NY- near Nassau county.

 

Thanks for your help!

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There are several supplements that can help with anxiety. Taurine and theanine are just 2 of them. You would have to start slow though and build up. Not enough time to do that in your situation. Would Benadryl help her sleep on the way there? I did a lot of bribing to get my kids to drive 9 hours to Chicago for treatment.

Psychs have not done much for our son. He is doing psych meds at night and getting help with a sleep issue on top of it. It has been 4 years of experimenting.

Therapy might help if you were able to find a top notch therapist.

I know our Ohio PANS/L yme doc makes house calls to a cople of his PANS patients who can't leave the house. He does phone conferences between in person appointments.

 

Good luck today. Hope the doc knows just what to do.

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if your dd is being treated for PANDAS, what reason does your husband give for taking her to a psychiatrist?

in your place, i would think that course of action useless. you don't say how was your dd treated.

if it is a bad case, as it seems to be, IVIG may be the best next step. Did you discus that with your dr who diagnosed PANDAS?

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My thoughts are with you. We've been there. We had one day in particular when we were in CRISIS, made appointment with family doctor to squeeze us in, and were not able to go. Called and spoke with doc--described what was happening as we spoke. Told him the only way we would be able to get her in would be by ambulance. Our doc called the mental health department and advocated/demanded an appointment with someone ASAP. He called back with prescriptions for very low dose SSRI and fast-acting anxiety meds, neither of which seemed to have any effect. Long story short--we got her to that next appointment with the mental health practitioner who asked if DD had had strep and asked to test her for it! Our DD has benefited from using an SSRI as we treat PANS. I know this is not the case for everyone. We did not want to go down this path, but we will do anything to reduce her suffering and help her to recover.

 

Our experience has been that during those worst times, we need to breathe deep and hold on to each other. Those worst times will pass and/or we will find ways to deal with them over time. Hold on and look for a better day tomorrow.

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Your DD definitely needs therapy. You do not need a psychiatrist, a psychologist who knows CBT and ERT to deal with her OCD is sufficient and a lot less money. Go to the IOCDF website. I have the link below. Click on the FIND HELP tab towards the top of the page. you enter your zip, therapists, then it will take you to another page where you can fine tune your list by "child" "CBT" "ERT" and "psychologist", etc. some will even make house calls.

 

http://iocdf.org/about-ocd/

 

Here is the strategy that would probably be used: try taking a step outside the house - just one. Later try taking two steps, then three. Try to get her to the car. Then just drive down the street and back, next time a bit further. Each time when she gets anxious, help her take deep breaths to relax. Exposure Response is all about one small step at a time and desensitizing. This would be done over a period of days. If she can't handle this, wait for a psych to aid you. I agree too w/ ktdommer, that Benadryl might help calm her before you try.

 

If your insurance covers mental health, you can go to their website for a list of providers and start making calls to find one that suits your DD's situation.

 

God bless!

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My Ds 10 rarely leaves the house. He has Pans/Bartinella. That is just another form of anxiety. When the antibiotic cocktail is working he automatically returns to normal and wants to go out. But these" refusal to leave the home sessions" have been coming and going for 8 months. NO SCHOOL here!! I no longer can work outside the home!

With each flare, herx or set back he wont' leave the home!! I am amazed at all these kids going to school. I guess not every child has this symptom. It's a tuff one I will admit. Our child is too young to be left alone much so I am in prison with him. We just started a new cocktail of meds and he is beginning to want to leave the house again. Just proves to me that it is brain inflammation . I will admit its a slow start and we take baby steps. Maybe one hour at the mall or a short play date at first. In the past, the agoraphobia has left completely but as soon as he flares or herxes (whatever) that is our first sign. ( I can't go out because my brain wont let me)

Some children find relief from psych meds but many have raged and become worse on them. If you can find a Psychiatrist that knows PANS, they might be helpful. If not, the doc will treat the child like other mental illnesses and this approach can be very problematic. My husband also wants a quick fix and a magic pill. There is none!!!! Lot's of patience and compassion. There is a well know Pandas doctor in Queens NY (Dr S I believe). Her name is on the Pandas web site. Call her office perhaps and ask if they have any references or suggestions. Work really hard at anti inflammatory supplements and food. That should calm her a bit. Viruses have a big effect with our Ds as well. Try L-Lysine. Have you looked into Stephen Buhner herbalists? Some gals on this forum swear by his protocol for Pans and co infections. We are beginning that journey. Take it day by day and know that many feel your pain. I have great compassion for these children because no human let alone a child should suffer like this! God Bless!

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