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PANDAS well into adulthood? Introducing KingJaffeJoffer


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Hello, Everyone.

Before I begin, let me say that I'm very glad to have found this forum. I have found many of the posts very informative and your children are very lucky to have parents like you all who are so concerned with their recovery. I'd like to tell my story, in hopes that anyone may be able to shed any light on any aspect of this situation. I have had very severe OCD since the age of 12, with 2 or 3 random episodes of OCD-like behavior before that (maybe ages 4 and 6?). Throughout childhood, I had strep throat around 30(!!) times, and when I was younger I had contracted Kawasaki disease. Around the same time the frequent strep seemed to wane (12 or 13), the OCD developed. This also corresponded with a period of great trauma in my life. More specifically, the strep infections may have subsided a few months after the OCD developed, but I don't remember. I was pretty much a complete disaster until the age of 22. I barely made it out of both high school and college, the latter of which was many years late. The only thing to ever help has been major dietary changes, if anyone wants more info please feel free to ask or PM. Even though I am able to function better, I am now 31, have taken a downturn in recent years and am still very sick. Recently it occurred to me that PANDAS might be the cause. I have seen two of the top PANDAS doctors recommended on this board, and am actively being treated by one of them now. It was found that I had high strep titers, which is a clear sign of PANDAS. I suspect that most people aren't lucky enough to have such a clear indication. I think my Cunningham test came back in the PANDAS range as well, but I don't have that paperwork as reference. Also, my strep-fighting antibodies were measured, (does anyone know what these are called?) and I was told that out of about 8 or 10 different antibodies, my body only produces one in any kind of volume. I just started treatment and am currently about 2 weeks into an Augmentin XR prescription, and am waiting to finish that out. I am unsure of our next move, of course it depends on what happens with the abx. I am 100% willing and able (in a sick way, eager) to undergo IVIg and/or PEX if it is deemed helpful by the doctor. Has anyone ever recovered or heard of anyone recovering from PANDAS that they had taken with them well into adulthood? Maybe this is all wishful thinking, but it seems like all the pieces line up and this may actually help me. I know that there is talk of the 'age factor' on the boards, but I have made tremendous strides towards health at 22 and 24, so I do know that some degree of recovery is possible. The fact that I have an active strep infection, have a positive Cunningham test, and have a documented inability to fight strep gives me a lot of hope for recovery. If the abx don't work, my limited understanding of PANDAS makes me thing that IVIg would be a very effective treatment for me. Hopefully it will bolster my immune system to be able to fight the strep and reduce inflammation at the same time. I'm sorry for the long post. I'm just coming to understand all this stuff so if my logic is flawed or if anyone has had similar experiences, please point that out to me so I can better understand what is happening - I would really appreciate it. Thank you for reading this far.

 

-JP

Edited by KingJaffeJoffer
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JP,

 

Hi. Have you had any other immune testing done recently? Ivig may be helpful also if your subclasses are low. I am also wondering what your level of exposure is? Do you work around children or serving the public? I know we are all exposed to a certain degree, but I work with elementary special ed kids so I swim in germs.

 

There's always hope JP. You may not think at this point in your life you are likely to outgrow this condition, but that does not mean all is lost. My dd11 was sick many years, maybe 7 or more, before we knew it was pandas so she wasn't caught early like you will often see referenced here. Don't worry about that! Nobody has the answers, just different degrees of educated guesses. Since my girl has been treated with various abx, steroids and several ivig's, she has only become healthier and closely approaches neurotypical....just in time for the normal drama of teen world. Yes, ideally, many parents wish they knew then what they know now. Oh well, gotta deal with the present. Kudos to you for taking the driver's seat in your own life! I applaud your self advocacy and persistence.

 

All the best!

Jill

Edited by JAG10
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I know a 25 year old that went her entire life without diagnosis of PAndas until age 23. She had several 72 hour stays in hospital due to suicidal thoughts, anxiety was attempted to be managed by lexapro (amongst other pych drugs, lexapro worked somewhat) that helped some. Mostly therapy is what helped her she had very tough time finishing high school and college due to incompletes when she was homebound. She also gets diseases like shingles, chronic sinus issues (several surgeries), strep throat and when sick her anxiety and Ocd are off the charts and she is sick frequently. She is finding some relief with abx longterm and would like to get off her psych meds as she does not believe they help her. Exercise and diet helped her at many times in her life as well. She worked with my son for years (missed a lot of work too) and when my son developed pandas she was aware and she researched it with me, she came to the conclusion that is what she was suffering with since age 5.

 

Like you she has had ups and downs, but able to still live her life. Keep posting very curious to know how abx works out for you. Best of luck for lifelong healing.

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Wow, big thanks to you all for all the support!

 

Peglem, that study is very encouraging, thank you.

 

Jill, Thank you for your kind words. I'm glad to hear that your daughter is improving! I have had some immune testing done, one thing that specifically stands out is that my IgG4 level is 3. I think normal is around 39, so that's pretty bad. I am going to get all my records from my current doctor next time I go so I can really have a full picture of what's going on.

My level of exposure is about average, I suppose. I currently live in NYC and work in a large office. I do not work with kids or the general public. I have a dog.

 

Hugs, Thanks very much. I'll certainly keep you guys updated. I wish your friend and your Son the best of health! I finish the abx in about 3 weeks and am excited to see what happens from there.

 

 

-JP

Edited by KingJaffeJoffer
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The low IgG 4 and failure of pneumo strep serotypes is a familiar picture on here for those going the IVIG route. The IVIg provides passive immunity but you want to do your best to clear active infections prior, so keep on top of the abx.

 

Your eclectic interests are curious......TX BBQ, cigars......nutrition, boxing..... Johnsmom turned me onto the BBQ Pit Boys and that was just the best ribs and beans I ever made!

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I live in NYC as well (which is great! why do you think it's awful?)... you should see Dr. B. They are very good at getting approval for IVIG for immune system problems.

My Igg4 was also very low, failed the pneummoccocal etc. See Dr. B in Connecticut. You can take the MetroNorth, it's walking distance from the train.

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Hey jag.... All this time on here and I never knew that you ALSO taught elem. Sp. Ed.! What state? I'm in Tx.

 

 

I'm actually as school-based SLP, so I work with all the special education students in a variety of levels/programs. Between the illnesses, allergies, drool, spit from lisps.....

 

I've often wondered if there are so many nurses, therapists and sped teachers on this forum because we are skilled observers and diagnosticians or because we are bringing home so many germs!

 

Probably both :ph34r:

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Jill - I'm glad to know I fit the mold! That gives me even more hope. Yeah, I'm definitely all over the place with my interests. Changing my diet and lifestyle had a tremendous positive impact on my OCD. It was that alone which got me from a complete disaster to being able to live a pretty normal life (from the outside looking in, anyway. Girlfriend, good job, etc). I fell in love with Texas BBQ, which was very fortunate because I stick to a paleo-type diet - no grains or sugars, etc. Pretty much just meat and vegetables. Boxing is a ton of fun and keeps me in great shape. I guess the only outlier is the cigars... a guy's gotta have a least one bad habit, right? ;-) I have cut down a lot now that I am actively in treatment.

 

3Boys - I'm all over the probiotics, thanks ;-) I was a little disturbed by the idea of taking abx since I haven't taken so much as a Tylenol since 2002, so the first thing I did was buy a bunch of probiotics to go with them.

 

Bronxmom - I can go on and on about NYC... but I'll spare you ;-) Thank you very much for the excellent recommendation. I just started seeing Dr. B about 5 or 6 weeks ago and so far I am very impressed and hopeful.

 

-JP

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