alderliefest

Hey all I'm a 23yr old PANDA. My mom is constantly frustrated by my OCD habits and gets very angry with me when I let my panic get the best of me. So I ask you how do you parents handle your PANDAS children!?

I think its fairly common. I found out when I found out about the PANDAS that I had it. I don't know if DD2 had is it yet. I hope not. I have type 3 I believe which isn't going to affect me later in life but it is odd. I also have mitro vaulve prolapse because of the Ehlors Danlos

In 2000-2002 i was on 250mgs of Amoxicillin twice a day 2000-Current I am on Luvox 50mgs twice a day and Clonopin .5mgs twice a day 2009-2010 I was on Clydamicin 150mgs twice a day for 30 days end of march i took a round of zithro and am now taking 250mgs every 4 days. Also for the past month I have been taking omega3 once a day and cranberry pills. I have an OK immune system. I have Ehlors Danlos, which is a connective tissue disorder, and i get a ton of colds and ear infections, but otherwise i don't think i have any real immune issues. I'm definitely gonna call Dr. B.

Dr T doesn't want to upset my stomach by giving me too many or risking colitus

Yes. My first onset of symptoms was when I was 12, but I always had panic issues.

In 2000-2002 i was on 250mgs of Amoxicillin twice a day 2000-Current I am on Luvox 50mgs twice a day and Clonopin .5mgs twice a day 2009-2010 I was on Clydamicin 150mgs twice a day for 30 days end of march i took a round of zithro and am now taking 250mgs every 4 days. Also for the past month I have been taking omega3 once a day and cranberry pills. 250mg of Azith. every 4 days is WAY too low a dose. Try 500mg/day. Thats what Dr. T prescribed.

In 2000-2002 i was on 250mgs of Amoxicillin twice a day 2000-Current I am on Luvox 50mgs twice a day and Clonopin .5mgs twice a day 2009-2010 I was on Clydamicin 150mgs twice a day for 30 days end of march i took a round of zithro and am now taking 250mgs every 4 days. Also for the past month I have been taking omega3 once a day and cranberry pills.

I was diagnosed with PANDAS in 2000 by my psychiatrist, and was on 500mgs of amoxicillin a day for about a year, then took a round of zithro, and was so much better, then in 2002 i stopped the abx and bu 2005 I relapsed and had ASO levels up to 1400. Now the are at about 580 which is the lowest they have been in years.

During my pregnancy I lowered my OCD meds significantly and was okay, and got through the pregnancy. The second I had my daughter all my symptoms returned in full force. I had to take full doses of my meds, and felt better but was not allowed to nurse. I got my period 6 weeks after having my DD2 and I have been surviving with my panic since

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

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.

I am currently a patient of Dr. T and have heard nothing but wonderful things about him on this forum, but I feel as though he is neglecting me as a patient. He won't return my phone calls, it took him 2 weeks to tell me my lab work, and seemed careless about what my treatment would be. I'm not 100% sure what i'm even supposed to be doing. Has anyone had any problems with him, or if anyone can give me any feedback. He is my only hope, and now I'm starting to loose hope. Especially with my symptoms increasing.

a few years ago when I was about 17 (05-06)I was having a lot of vision problems and floaters. I went to 100 specialists and no one could tell me anything. It was around the time I felt like I had relapsed with the PANDAS. I also had sensitivity to light and "haloing" when i would look at someone against a light surface, I still have these problems but not nearly as bad.

no boyfriends have gotten strep from me, and my husband hasn't had strep in the past 4 years that we had been together. So I don't see how I could have given it to them.

I agree with you 100%. I was diagnosed in 2000 with PANDAS. I was better and living life normally after being on antibiotics and anti anxiety meds by 2001 and was thriving till 2005 (I stopped antibiotics in 2002). In late 2005/2006 I became really really depressed which i believe to have been a relapse of the PANDAS. I was in bed all the time and I slept non stop, my anxiety wasn't terrible though. Then I was better, but I don't think I ever felt as good as I did in 2002-2004. In 2007 I got pregnant and had a beautiful baby girl, after she was born my hormones went into overdrive and I was a complete mess. I recently have been feeling worse and worse with my anxiety and have been seeing a Dr and been on Clydamicin. I feel better when I am on the antibiotics but I can't be on them forever, I feel like relapse is definitely possible and may happen to many PANDAS suffers years after the original onset, keep pursuing your Dr's even after you or your child feels better, I wish I had.

I have had PANDAS for 10 years now. I am known as a carrier. I have had strep throat once or twice in my life. We don't know where the infection is hiding in my body, but we know its there. My ASO titers are in the high 700's. My highest being in the 1400's (2006). I was on antibiotics from 2000-2002ish and on anti anxiety meds for 10 years as well. I just ended a 40 day regiment of clydamicin (150mgs 2 times a day). I got blood drawn and am waiting on results. I have never given anyone strep even though I'm a carrier and I can't get rid of the infection. I know I'm a carrier, I just wish we knew how to get rid of it! .... i did feel better on the antibiotics, when I wasn't having G.I issues.

I would do this in a heartbeat as well!

i was "cured" but i've been having symptoms agian

I refuse to get one. My Dr thinks it would be a good idea but I seem to be a carrier and hardly ever get strep throat. I have only had it once that I can remember, so i don't think in my case it would help. Dr. T also said that I would get an onset of PANDAS symptoms if I were to get one, and I really can't afford to go back to the way I was even if it is only for a few weeks.

I sometimes get loose stools/diarrhea on zithro, by day 4 or 5 is when it usually hits me. I don't think its uncommon.

I have a 2 and 1/2 year old and every day is a struggle for me to deal with my anxietys and take care of my little one. I was wondering if there was anyone out there in the same boat and if there is how you deal with it. I have a hard time being alone with her I'm always afraid she is going to get sick and I won't be able to take care of her because I would be so scared, its happened a few times and luckily someone has been home or near that they could come be with me, but that won't always be the case

thank you everyone or all your much needed support!

I am a 22 year old and I have had PANDAS for 10 years now. I was diagnosed at 12 but no one knew how to treat this or what to do. No one would listen to me or my mom for years, and ignored my extremely high ASO titers (1450 in 2006). My ASO titers have always been high. Recently they have been what I call "low" at around 670. I finally am seeing a specialist who I noticed posts on this page, Rosario Trifiletti. I just started 150mgs of clydamicin twice a day for 15-30 days depending. I am hoping this will eliminate my symptoms, anxiety disorder, OCD, separation anxiety, depression, and excessive sleepiness. I also have a 2 year old daughter who I sometimes have difficulties taking care of because of my anxiety. All I want is to be better and for no one to have to suffer this long, like I did. I would just like to hear stories of others who have overcome this disorder, or people in treatment, and if there is anyone out there not in the "pediatric" age that has PANDAS. thanks for listening. Jane