Loosing all hope

[alderliefest]

I spoke with Dr. K and he said that there is very limited amount of what he can do for adults with PANDAS. Since there is very little research. If the best of the best can't help me I don't know who can. I don't have the money to fly to see him or the time, so now I just don't have much hope. I live in NJ and have been seeing Dr. T and I think he is a great Dr. but I don't think there is much more he can do for me. I've had this disorder for 10 years now, got better in 2001 and relapsed in 2005/2006 with severe depression and eye issues. I have just OCD and Panic Disorder, and I also have an almost 3yr old. I feel like a relapse is on its way again and I just want help.

[fuelforall]

I spoke with Dr. K and he said that there is very limited amount of what he can do for adults with PANDAS. Since there is very little research. If the best of the best can't help me I don't know who can. I don't have the money to fly to see him or the time, so now I just don't have much hope. I live in NJ and have been seeing Dr. T and I think he is a great Dr. but I don't think there is much more he can do for me. I've had this disorder for 10 years now, got better in 2001 and relapsed in 2005/2006 with severe depression and eye issues. I have just OCD and Panic Disorder, and I also have an almost 3yr old. I feel like a relapse is on its way again and I just want help.

 

 

very sorry for your pain. Have you looked into neurofeedback? These folks are in NYC.

 

http://www.thewaytowellness.com/

[sf_mom]

If you are open to a more homeopath resolution that might take a year or two, I recommend consulting with the nutritionist we are working with out of Boulder CO. She suffered for years from auto-immune and has been symptom free for 16 years. She is $90 for a consult.

 

www.thisworkscrutchesdon't.com

 

 

I spoke with Dr. K and he said that there is very limited amount of what he can do for adults with PANDAS. Since there is very little research. If the best of the best can't help me I don't know who can. I don't have the money to fly to see him or the time, so now I just don't have much hope. I live in NJ and have been seeing Dr. T and I think he is a great Dr. but I don't think there is much more he can do for me. I've had this disorder for 10 years now, got better in 2001 and relapsed in 2005/2006 with severe depression and eye issues. I have just OCD and Panic Disorder, and I also have an almost 3yr old. I feel like a relapse is on its way again and I just want help.

[EAMom]

Are you currently on abs? Can you get something like Azith 500mg once a day long term (at least to try for 1-2 mo.)? Can you have Dr. T. rx it (since he's in state). And then go from there? Maybe add on a course of pred after a couple of months?

 

Have you recently checked family members (throat cultures) for strep?

 

Hang in there!

 

Even if there isn't research on Adult PANDAS...that doesn't mean Azith. won't help! (There is research (a small study) on plasmapheresis with adult pandas but that would be a difficult procedure to secure right off the bat.) You would want long term abs anyway, to prevent recurrance, so I think Azith. is a good place to start.

Edited April 21, 2010 by EAMom

[dcmom]

Consider trying Dr Freedenfeld at Stockton Family practice. He is known for his treatment of Autism, but also told me he works with lots of pandas kids. He is not a pediatrician, though, it is a Family practice. I don't know if he does IVIG, however.

 

If possible, maybe get to Dr B in Connecticut- he does treat pandas, and immune def with ivig.

 

Have you had an immune work up?

[Sheila]

We can see why you feel discouraged, but hang in there!

 

You have symptoms that do not seem limited to a PANDAS diagnosis, so you shouldn't feel like all the doors are closed.

 

Here's someone who you might want to consider for a consultation:

 

Dr Michael Schachter is here in Suffern, NY--not far from you.

 

You'll see on his site that he is a psychiatrist and nutritionist, and the author of a book on depression. He uses an integrative approach and would seek to determine what underlying medical conditions may be the basis for your problems. I don't know how much of his work would be covered by insurance or what your situation is in that regard--but it might be a good place to start in figuring out just what is going on.

 

I don't have any special connection/relationship with him (though I once interviewed him, he is very bright) and can't make any promises of course. . . but he's someone to think about along with other ideas that come in.

 

Sending good wishes your way, Sheila

[alderliefest]

I have been diagnosed with PANDAS. I have the classic signs of it, along with extremely high ASO titers.

[Megs_Mom]

Great advice above - I'm so sorry you are suffering with this - OCD and Panic can be quite debilitating diseases. I would echo Sheila's comments and wonder if you are sure it is PANDAS? If so, I know you'll find someone to help and to try IVIG or abx. However, even if not PANDAS, the therapy for OCD can be quite effective. And it can start to work fairly soon. It's called ERP - exposure & ritual prevention. Have you already tried this? Do you need a recommendation in your area? If so, PM me your general area and I'll see if someone great works there. The difference between a decent & a great ERP therapist is pretty amazing.

 

Keep hoping, there are lots of answers out there for you, even if it does not feel that way today. Do you have anyone that can help you with some of the legwork and support your efforts?

[bronxmom2]

I also have adult PANDAS (I had a temporary remission during and following pregnancy with my first child until we both got strep and unleashed the monster again.)

Dr. Bouboulis (an immunologist in CT) is helping both me and my child. He can do an immunological workup. I am not doing IVIG, just antibiotics (I am more concerned with protecting my kid from a "death spiral" we had developed) but I suspect he might do it if I pushed for it. Contact him. He is a good person.

You can PM me for his contact info.

[JAG10]

Warning-Gentlemen may want to skip this post.

 

I hope this isn't too personal. Someone posted information about a grown daughter with PANDAS feeling relief from symptoms post pregnancy. Did you notice any changes with your symptoms that revolved around your pregnancy?

 

The reason i ask is this... I don't think i have pandas, but I definitely have the ocd tendencies and had moodiness as a younger woman until my first pregnancy (my pandas dd10). Upon her birth, I had low prolactin, so I couldn't nurse and no menstration for 9 months after until I started taking BCPs to bring it on. I needed fertility help to ovulate to conceive my dd6 and did not start menstrating on my own until she was 4 y.o. So, for those 7 years, the moodiness was completely gone. Then, the moodiness returned similar to PMS. But before I had my first child, I was a handful mood-wise. Based on my experience, I thought the comment about the adult pandas daughter finding symptom relief with prenancy was interesting.

 

Does any of this mean anything to your experience? Do you have any history of PCOS? I guess my point is that perhaps you need to look backwards in time at periods of stability for you and see if the pandas docs can derive any meaningful connections. Hormone levels must play some role in this equation.

[Fixit]

Also if you can get ahold of momto2pandas and michealtampa..they are both adult pandas...if i am correct...mom2-2 has her's under control (and i think she is very busy with work and 2 kids )and mt...just kinda of got his diagnosis at the age of 42 i think....i believe he is in the throws of trying to get himself healthy and decided to step away for a while...but maybe if you reach out...maybe he checks in now and then...and can give you some directions.......other than abx....mt tries to go the natural route!!!!!!

 

God Bless!!!

 

 

 

I spoke with Dr. K and he said that there is very limited amount of what he can do for adults with PANDAS. Since there is very little research. If the best of the best can't help me I don't know who can. I don't have the money to fly to see him or the time, so now I just don't have much hope. I live in NJ and have been seeing Dr. T and I think he is a great Dr. but I don't think there is much more he can do for me. I've had this disorder for 10 years now, got better in 2001 and relapsed in 2005/2006 with severe depression and eye issues. I have just OCD and Panic Disorder, and I also have an almost 3yr old. I feel like a relapse is on its way again and I just want help.

Edited April 21, 2010 by Fixit

[thereishope]

Progesterone raises when someone is pregnant and they are currently researching to see how progesterone may help people with brain injuries. So, there may be a connection to the progesterone increase in pregnancy and the relief of PANDAS symptoms at the time. I brought this up awhile ago...

http://www.latitudes.org/forums/index.php?...hl=progesterone

 

alderliefest, can you go through a list of supplements that you are currently taking and what antibiotics you have recently tried or are currently taking? Do you take birth control? Also, if you have blemishes or adult acne you could try going to a dermatologist and often they will give long term antibiotics for acne. Those antibiotics may help your PANDAS. Just brainstorming here.

Edited April 21, 2010 by Vickie

[EAMom]

That reminds me that one or two of the moms with PANDAS have posted that certain types of birth control pills have helped with PANDAS symptoms....so maybe you could get on those (I forget types were good/bad but maybe some one will post that info!), in addition to the antibiotics and other things folks have suggested.

 

--oops...I see some birth control info. is already in Vickie's link.

Edited April 21, 2010 by EAMom

[thereishope]

Yaz was specifically mentioned.

[H Mom]

Progesterone raises when someone is pregnant and they are currently researching to see how progesterone may help people with brain injuries. So, there may be a connection to the progesterone increase in pregnancy and the relief of PANDAS symptoms at the time. I brought this up awhile ago...

http://www.latitudes.org/forums/index.php?...hl=progesterone

 

alderliefest, can you go through a list of supplements that you are currently taking and what antibiotics you have recently tried or are currently taking? Do you take birth control? Also, if you have blemishes or adult acne you could try going to a dermatologist and often they will give long term antibiotics for acne. Those antibiotics may help your PANDAS. Just brainstorming here.

 

I have read several posts that often girls outgrow pandas when they start their period - maybe this is related to the progesterone also????