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What happened to people on here from a year or so ago?

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As somebody who's been on here since summer 2008 (when our son had his "exorcist syndrome" overnight PANDAS symptom explosion), I can say that Buster's contribution has been enormous. He's been patient and generous in clarifying some of the trickiest aspects of the science around PANDAS, and the links below contain invaluable info that he distilled from his exhaustive research, then graciously refined with feedback from the whole online community. I miss his posts... but I'm awfully glad that things are going well enough that he doesn't have to live on this forum anymore!


I don't spend as much time posting as I used to, because so many others post responses that cover everything I could have offered. But I still read the new posts almost every day (my addiction, I guess). Thankfully, our ds is doing much, much better now... but he's not 100% yet. So I'm always interested in new developments, links to new research, and shared results of new treatments.


Mostly, though, I feel an obligation to check in regularly in case I can help somebody else the way so many helped us. When things seemed hopeless in 2008, folks on here like Buster, EAMom, Diana P, and others provided a lifeline. They pointed us in the right direction time after time, when local docs had nothing to offer us. They kept us sane when my wife and I felt like our world was crumbling. I honestly believe that this online community saved my son and our whole family (kind of sappy, but it's true). I want to return the favor, at least to the extent possible.


So a lot of us "old-timers" still lurk on here but aren't as vocal as we used to be. And some have moved on, because the posts can be painful reminders of the darkest days of their lives, too traumatic to relive.


Interesting question... We're doing well and I'm not on the forum all the time. When I do check in, there's a lot of great advice and I'm finding I don't have a lot to add -- this is frankly a bit of a relief.


Back in 2010, I started documenting everything I had collected or learned in hopes that I'd save someone the hours I spent searching.


I hope these resources continue to be beneficial and I update them occasionally.




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This month marks our four year's of PANDAS in our lives. I remember when I would go on the tic board (there was no PANDAS board then) and read everyones old posts and wonder where did the families go? Are they cured? Did they give up? I even would instant message some and ask. Well, I also remembering making some promises to god that I would keep checking in for everyone elses curiosity. My son is a PANDAS ticcer. Just when I thought things were under control last year, a year after his IVIG, last spring/summer was his worst year yet! I believe it to be a combo of things: allergies which always makes him worse, lost soooo many teeth last spring (a big problem for him) and he was 11 which is also a key time. We did a steriod burst, upped to high dose antibiotics and moved on the IVIG #2. Things settled down with bumps and the last 2 months have been pretty good. He is not tic free but pretty well. I also added a few new supplements to his regimine for screen sensitivity and this has been great as he is able to handle more time and does well with them now. I am trying to come on here much less and hardly post as it does bring back such traumatic times for me of reading all night. My son is 12 and turns 13 in 7 months. I am praying he is going to grow of it all soon and we can live our lives in a normal way! I am moving into a less panicky stage when I see things and trying to grow our lives in other ways. Through it all, he has remained a happy, friendly, straight A student, involved in sports and other activities. He has many friends and loves school. For that, I am very thankful. I am also thankful to all that posted and helped. I hope that everyone finds success for their children and we can get the answers we need.:)

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Hi Formedbrds,


You said IVIGs did nothing. How many did you do? Were they high dose?

We haven't done IVIG yet but know our doc is going to bring it up soon, so want to hear all sides. We had luck with abx for about 8 months, but our luck seems to have run out...





Not completely cured, but functional. Maybe about 80% back. Antibiotics did it. Steroid taper burst maintained about 90-95% normal for several weeks. That may of helped booster the antibiotic benefits. I don't know??? IVIGs did nothing. It was a very slow process... still is. We still have some bad days but nothing close to the nightmare last year.

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we did IVIG- I feel they helped improve our baseline- happier child. I visit now and again, but a recent Lyme diagnosis and starting of treatment (which so far is conservative, just an addition of abx) has improved us so far to a pretty happy functional level. Just a few quirks left to work out with the OCD but doing well so far. Just gets overwhelming to think about going back to that place so sometimes I stay away. I do want to be able to come back soon "certain" that the lyme treatment is our cure, share our whole story, and help as many as possible. I was a huge lyme skeptic, but we are doing well, and I guess time will tell if the proof is in the pudding.

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Thank you Buster for all of your hard work. When I am trying to educate a new family or physician willing to treat I always include your hard work in what I send them. I am finding now that a lot of the first line doctors like pediatricians, school nurses, psychologists, etc. have heard of it just have never seen it and don't know what to do. In the last 2 years since I have been on the forum there has been truly unbelievable progress. The scary thing though is I feel new cases are popping up everywhere.

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I still read the forum once every week or two. Most of the time I find that someone else has already said what I would have said, so I don't post. My dd too, has now been diagnosed with Lyme after a year of PANDAS treatment (multiple hd ivig and antibioitcs) did not get her to 100%. I read the Lyme forum more often now, but don't participate as often as I did when I had no idea what was wrong or how to fix it.


Dd has been on Lyme treatment for about7 weeks now. She is struggling with the herxing but I do feel like we are on the right path. She has had 4 lyme rashes as a result of die off. We are one of the few who is continuing with IVIG and Lyme treatment.


It's been a long road to figure this all out. I'm tired and sad. I wish I could say we weren't here as often because my dd is well, but that is not the case yet. I will certainly come back and let you know how she is doing as she continues with treatment.

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Mary - it does help, thank you-

May I please ask: are you keeping her from school while she heals from #2 IVIG? Are you keeping on daily antibx. after your IVIG's?

Thank you-----Sarah


Yes, Sarah she has not attended school since IVIg. She has not attended school since Feb 28. Her symptoms prevented her from getting out of the house form that point forward. She talked about going to school this week but now she has 3 weeks of homework to catch up on and the stress of thinking about that...well, we all know how stress works with PANDAS! But, I am not concerned about her missing school. School is a petri dish of infectious material and I am glad to have her away from that at the moment.


Re: abx-yes, she's on 875mg augmentin twice per day for 10 days then she will be on 275mg twice per day for a year. This is a different protocol than Dr K has used for others. We described to him that our dd demonstrates a decline in function as the hours get closer to the next abx dose. So he thought we should try spreading the dose out over the day and see what that does.


from Michigan

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I would like to echo WORRIED DAD...I do try to check back as I believe that the support I received here, the knowledge I gained(in large part due to Buster's exhaustive research)and the encouragement I received when things were just as dismal as I ever thought life could become provided me with the strength and endurance required to find the correct diagnosis and treatment for my child and I want to be sure that that continues for anyone who ever stumbles upon this forum in the wee hours of the morning, with tears in their eyes and sorrow in their hearts as their child is lost to them yet sitting right beside them.


from Michigan

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I still check this forum several times a day, but I echo what other posters have said. I don't post as much because 1) most of the time, the information is already posted and 2) we are in a great spot, and I don't have any experience with IVIG or Lyme -- just steroids and some antibiotics.


So, I try to share what our experiences have been. However, I'm sure for some of the regulars, it's a broken record.


I also want to add my thanks to EAMom, Buster and Diana. Their time on (and off) this forum have been invaluable.


We are currently just past the 1 year mark of our PANDAS daughter starting steroids a 2nd time. This time last year were were relieved to be seeing her improvement on only 2 weeks of prednisone.


Since then, she has had her tonsils removed, and we dropped to a prophylaxis dose (150mg omnicef daily) of antibioitcs. We saw some minor, minor upticks in her OCD here and there...but we can usually associate it with strep exposure. She does still once in a while say that she feels like she needs to use the bathroom too much or right away after just going.


She has had a very successful 1st grade experience, and she is at the end of the same results for 2nd grade.


She also had a stomach virus in the winter, and after that her minor OCD was better...*shrugs shoulders*


We've also seen no side effects of the flu shot she received in October.


I still continue to pray for all of our children. This disorder breaks my heart because I feel that there is a good number of children who would be in my daughter's situation, if only their pediatrician heard of it, believed in it, and every neurologist would treat it.

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I haven't been posting at all because things were not going well. My son would have a brief good stretch and then relapse. I am hopeful that we are finally getting to a point where we are making some lasting headway, but it is still too soon to be sure.


My son had PEX and has had five high dose IVIG's with the best response coming after PEX and the first IVIG. Subsequent IVIG's have had a positive effect but nothing long lasting or dramatic. But for each of those IVIG's that didn't seem to do much, we had a fairly significant immune challenge fairly soon after that may have been the reason, tooth infection, ear infection, multiple bad colds, gastro-intestinal illness.


The tooth issues have been big for my son. After PEX, he had a tooth infection that was devastating. Like others I have seen on the forum, he seems to have a significant uptick in symptoms even with a loose tooth. He has three baby teeth left and I can't wait until they are out. I had a thought the other day that the supposed growing out of PANDAS at puberty may be related to the fact that around puberty is also when all the adult teeth have grown in. I have heard so much lately about poor dental health resulting in inflammatory/immune processes taking place in the body, such as heart disease, related to the bacteria from the mouth that enter the blood stream when people with gum disease chew or brush teeth. Maybe the same thing is happening with the loose teeth. The breach of the gum allows all that mouth bacteria an avenue into the body which requires an immune response, and voila', psychotic child. Just a thought.


Anyway, we finally broke down and saw an llmd when nothing else seemed to be working. He didn't see any real evidence of tick born disease in the test results but said that doesn't necessarily mean anything, and that regardless, my son's issues certainly seemed to him similar to what were infection induced problems in others and thought it was worth it to try a multi antibiotic approach for a while. I would say we have definitely seen positive results, although he is not symptom free, he is happier, has much more mental clarity and is more vigorously health. We'll see where it goes.


We also recently took him off of gluten due to ongoing bouts of constipation followed by diarrhea and low appetite in addition to poor teeth quality which is a Celiac symptom. The stomach problems are certainly much better, and Celiac is associated with mood and behavior disorders and even OCD. Here is a link. http://psy.psychiatryonline.org/cgi/content/full/50/3/300. We are going to eventually get the testing for Celic, but that requires going back on gluten, and right now we don’t want to rock the boat.


I wish we had better news but he has really had a good stretch these last few weeks and we have some optimism again. I'm still convinced that worst case he can live a good life with at most a low level of symptoms that need to be managed. Hopefully better than that. I still read the forum on occasion and still hope someday to get on here and tell of our success.


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Miss you, Alex!


My girl prematurely pulled out her upper canine 10 days ago. Ugh!!!!!!!!


Since that event, we've seen memory/math issues and the past 4-5 days the meat/texture avoidance has emerged (which has been gone since last May.)


Oh yeah, and an uptick in creativity (no longer a good thing through my momma pandas eyes.)


Feel your pain. Going to CT next Wed-Thurs for another infusion.



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Buster, you are AWESOME!!!


I just wanted to add that one reason I don't log on here as much anymore is that I don't get on the computer nearly as much now that I have my iPhone. Sounds dumb, but it's true. I've also gotten in touch with some of the Moms I've gotten closest to on here on FaceBook & through the phone & all that. SarahJane, PixiesMommy, & BrownEyesMom are some examples of that. I definitely haven't forgotten about ACN though!!! Lots of times when I do log on I'm just watching. I've been doing my best to avoid posting "updates" everyday because believe me, I want to. Hahah.


Another reason is that I have been doing my best to keep Lyme stuff on the Lyme board. I'll mention it on here if it's relevant, but I try to keep them separate since I know some P.A.N.D.A.S. moms do get frustrated about all that. I think a lot of it ends up on here just because there are so many members & most of us are really active, whereas the Lyme board is just getting up & running. I still think about everyone I've met on this forum every day & I am so thankful to have found ACN when I did! A year ago at this point I had never seen a P.A.N.D.A.S. specialist. Had no idea about the Lyme. Had never even dreamed of starting treatment! I've made more progress in the ten months I've been on ACN then I have in the six or so years that I've been sick, & I owe it all to you guys! This forum is invaluable & while it is sad to see people go, you have to remember that most people wouldn't want to surround themselves with all of this after things got better. Personally, I think I'll only be logging on more once I'm better, but it's totally understandable. I love my cyberfamily! :)

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