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22 with PANDAS


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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

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Welcome Jane,

 

You will find strength and support within this forum. Keep us informed in your progress. I have a 2 confirmed children with PANDAS and I am wondering if my son will be diagnosed, also. He is 18 now, but has been suffering for years!!!!

 

Good Luck & Best Wishes,

 

Lynn

 

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

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Welcome.

 

The most important thing you can do for yourself and your daughter is to never give up hope. Obviously by your detrmination to find treatment, you know hope is there. PANDAS is treatable, but there is a lot of trial and error involved. Along with the antibiotics, take supplements like Omega 3's, DHA, and a good multivitamin. There have been parents who have posted here about their children who are now adults and doing well. You can also try taking Ibuprofen and see if that helps with any PANDAS symptoms. I have also heard the supplement SAM-E is good for moods, deoresssion, etc. SAM-E is the name brand. But I would suggest adding one thing at a time. Perhaps try the Omega 3's first and see how that helps.

 

Also, I would bring your daughter in for a strep test just to rule out she doesn't have strep. If you're going through this journey and treatment, you need to rule out you will catch strep for a family member. I also need to say to keep an eagle's eye on your little one. There very well might be a genetic connection with all of this ( I say there is, but the official research isn't there yet). If you see odd behaviors with her, again, bring her in.

 

Remember you're not alone in this. You have family here. Post any questions you Want. we will always try to answer.

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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

 

Welcome Jane,

 

You have reached the right forum and you have clearly found one of the best doctors around for treating this. You are farther ahead of the game then you may realize. You'll find amazing support, optimism, hope and utter genius within this forum. Best of all, the forum will continue to reiterate that you are not alone in any of this. Vickie makes great suggestions (she always does!) regarding supplements. I'll add my 2 cents also by encouraging you to take a minute for appreciation for this forum, for that doctor, the fact that you found both and for how much help there is available now compared to a decade ago. You're among friends.

 

Gayle

Gat's mom

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Hi Jane,

 

I am 42 with PANDAS. Dr. Kovacevic (referred to as Dr. K. on this board, he is one of the experts in the country, and does phone consults) actually sees my case as somewhat of a hybrid between pediatric onset and adoloescent onset. I have had plenty of the stanard symptoms for as long as I can remember, even back to childhood. My most debilitating symptom is sensitivity to fluorescent lights and wireless devices (cellphones, wireless networks, ...). Exposure to this exacerbates all the symptoms, but also makes me incapable of focusing or remembering things long enough to have a thoughtful conversation, as I keep asking the person to repeat what they just said. Dr. K. believes the primary problem for me is mycoplasma pneumonia, rather than the normal strep. I have just last night started on clarithromycin (generic of brand name biaxin), 500mg twice per day, and he believes there is a good chance that will take care of it all. We will see.

 

Michael

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