TwoSocks

3boysMom, No direct experience with your situation but I wanted to say I hear how scared you are and I'm sorry. There is always hope, in every situation no matter how hopeless it may seem. I'm not normally a rah-rah cheerleader type of person, but I had to respond because I believe it's true and I can tell you are worrying about forever, instead of today. Focus on today and try to remind yourself that there is hope. Kathryn

How are you Topaz? Have you found any sucess with anything new? We are status quo here, although we had an EEG this morning for possible absence seizures, so we are waiting for the results of that - and I was thinking, maybe lamactil will do something for my son as well? I don't know. Hope things are improving for you!

Thanks everyone for your replies. Kim I will have to look into those probiotics. I didn't know VSL#3 was a heated topic. My son seems to have an iron stomach like mine, but, I don't want to test it. I will get to my PM's today - thanks!!

Which probiotics are you using?

Want to present our story to all of you and see if you have any advice, and can think of something we haven’t yet. DS is almost 7. He has had two major PANDAS flare ups that lead to lots of tics which finally got the attention of Drs. Currently, DS is doing pretty well overall. He is also diagnosed with PDD-NOS, although he has not yet been officially diagnosed he likely will be when we do the ADOS tests again. We did them last when he was 3 and it was borderline. He does have impaired social skills, more apparent with peers, and conversational skills. When we began this odessy, he was on the following medications: Ritalin and tenex (guanfacine). He had his first PANDAS episode in pre-K. We didn’t know what was going on at the time, as we thought we were dealing with behavioral issues, in retrospect we were dealing with symptoms of PANDAS, OCD – rigidity, anxiety, emotional liability and eventually tics (in the end he looked like the third base coach giving signals and it was near constant movement). Luckily for us, the teachers knew about PANDAS and suggested that might be the issue. It took us a long time to convince his Dr. who after testing titers discovered how insanely high they were. We finally found the right antibiotic and within 24 hours EVERYTHING settled down and we were almost at pre-PANDAS level. I’m not sure we have ever been back to baseline honestly, but, not sure. We lived with PANDAS so long before we knew what it was, at least 4 months, maybe a lot more. BTW, I think the fact that DS had other issues caused the Drs to write everything off as, ADD, OCD, possible PDD, etc. So, we found our antibiotic and carried on, sharing our story with everyone since most have never even heard of it. After that first flare up, whenever we saw a spike in tics, we tried antibiotics which had mixed results. At this point we were working almost solely with our Developmental Pediatrician since our regular pediatrician said he didn’t “believe” in PANDAS. So about 1 ½ years after the first flare up, we found we were using antibiotic frequently – not constantly - but they weren’t having much effect. Beginning of first grade and he was doing OK, then we started to see a decline in general. It wasn’t until we started seeing the tics that I knew we were facing PANDAS again (yes in retrospect we were probably seeing the it whole time and should have been treating it). While desperately trying to find a PANDAS Dr. we were still working with our Developmental pediatrician (DP) who prescribed antibiotics, which while they didn’t do much for symptoms, we needed since his school was a HOTBED of strep, especially his class. We also tested his titers again which were elevated (he almost never tests positive for strep). Our Developmental pediatrician, while a PANDAS “believer” was suggesting a neurologist and possible non-PANDAS OCD, and meds to treat the symptoms. I was not a believer in this theory! I can’t stress how hard things were (January 2012) but, considering this group I don’t have to explain Finally, the DP prescribed steroids, prednisone 20mg 2xday for 5 days, almost as an afterthought, I’m not sure why I wasn’t asking for them since I was well read in PANDAS by that point, I guess I was waiting for a PANDAS Dr. We gave him his first pill on a Monday night, by Tuesday night all the tics were gone. GONE. (You know this though) I was so terrified that the tics would start all over again after the steroids “wore off”, but, since then we have actually done fairly well. We did find a Dr, I am sure I found her name here somewhere. She is an immunologist @ Newark School of Medicine and Dentistry, this is good because she accepts insurance, and also that is a good institution which at least in theory should be on the cutting edge of “new” things. We are able to pay for the more famous Drs., but since this is the beginning of our journey I didn’t want to start spending enormous amount of money out of pocket yet. She was wonderful. Honestly I didn’t understand much she said (LOL) but she took copious notes, drew some blood and then prescribed azithromycin for 30 days, and VSL#3. As my DH said, she had a very clinical approach, which I think is positive. I had brought so much information, meds backgrounds and lists and charts and graphs and notes, and she didn’t see any of it. Probably better she draw her own conclusions. So, that’s where we are today. The blood test results should be back soon and I am eager to see them. We have not had an exhaustive search of his blood for whatever possible underlying infection might be causing these problems. So here we are, that’s my story and here are my questions: Does anyone use VSL#3? I heard it has strep and after paying 60 for a bottle, it is sitting in my fridge and I’m terrified to administer it. What do you think? Am I missing anything obvious here? Thank you so much for reading this far and giving your valuable opinions about my DS and what we are doing to help him. Also, thank you for sharing your experience and the things you have learned, it has helped me tremendously. Kathryn

I don't have any advice, since I need similar advice actually. However, I wanted to tell you that you aren't alone. My son, 6 and in first grade is similar. When I started reading your post I was thinking OMG he has undiagnosed PANDAS. But, luckily you found support in that area. We were recently told to administer VSL 3 (probiotic) but since I found out there is strep in it, I haven't started it. I need to get a post together for the PANDAS board. My son was diagnosed with PDD-NOS recently and I know he is on the autism spectrum because he has conversational & social problems. He is social, but, frequently it is odd. His level of anxiety is directly proportoinal to his PANDAS status. It's so hard, the whole thing. Sometimes I just want to bury my head in the sand. Hugs to you and your son.

Yes!! I figured this one out afterward and it could have been a few things, but, he did have fifths disease. I am almost positive the flare up was from fifths. Our second worst ever (DS6) that lead to our first prednisone try, which resolved EVERYTHING in 2 days. Literally. It's a longer story than that of course, I ahve got to starta post with our story soon. Anyway, YES!

I would love to see these replies as well and will share my limited experience here. DS6 is on his second round of PANDAS (or continued for 2 years, but recent huge tic outbreak - more symptoms as well but this is the most obvious). The first time we discovered he had PANDAS, antibiotics turned his life around in two days. This time, he has been on antibiotics for a few months and still had the overnight explosion in tics. He weighs 65 lbs and was given prenisone, 20 MG 2X daily for 5 days. We gave him his first pill on a Monday night, within 36 hours all of his tics were gone. Totally gone. We are now 16 days post steroids and seeing things creep back in slowly. I have a much longer story, currently unfolding, but you asked about steroids that has been our experience so far. I know they can't be used long term, which is sad because this was like magic. Sigh. I will get a more detailed post together soon so I can share our experience (and knowledge?) with others.