ChrissyD

Dumb question but would he go swmming in a pool? Maybe you could book a hotel with an indoor pool? My son has IVIG last Thursday & Friday as well, go figure. No improvement yet but a lot of old behaviors are resurfacing and definitely more rage/anxiety. I'm praying its just the beginning of his healing. I'm hoping the same for your son T.Anna.

I don't think there's a simple answer to that question. My son is on Augmentin as well, and after a little trial and error we have him on florastor twice a day, as well as Klaire labs children's chewable probiotic mid-day. It has 25 billion units per tablet. He used to be on a super potent probiotic, VSL #3 which was 450 billion units and seemed to trigger him. We thought it might be die off but itnever got better. On the new regimen his tics are gone. We also made other changes so its hard to say if it was the change in probiotic that helped or just coincidence. I'm a nurse practitioner (sadly I don't treat children) and I registered with Klaire to get the health care professional wholesale discount. They sent me some educational monographs. I have their technical summary entitled "making sense of probiotics". If you want a coy, DM me and I can scan it and email it to you. I'm not endorsing Klaire labs or their probiotics, and I don't sell supplements---I only registered to get the wholesale price. But I'm happy to pass on their literature if you are interested.

Agreed Thenmama. I didn't mean to imply by linking to that article that I accept it as truth. I was just offering another opinion. I know of at least two PANDAS docs who say S. thermo is ok but then i understand others advise to avoid. I have experimented by switching my son's probiotics to one without It and my son's tics are better (he's also mostly dairy free). It's so hard to tell what's a contributing factor....lots of trial and error in our home.

Here's an article I found on strep thermophilus from Klaire labs. Not saying i don't believe some kids aren't affected by S. thermo but this offers another view on the issue. It seems there are different opinions on if it needs to be avoided-- http://www.klaire.com/images/PANDAS.pdf

Thanks for the link. That goes back awhile. My son is doing IVIG next week so if I'd ever consider pursuing it, it wouldn't be anytime soon. But I'm open minded to anything that would help my son. I'm enjoying your posts ThinkGut. Thx.

I was going to ask your opinion on that. Talked with Dr Hollander's assistant late last summer about possibly evaluating my son for PANDAS, and based on my son's history they felt he was a good candidate for their whipworm study. Didn't even consider it at the time because my son was in crisis. But now that I'm learning more I'm intrigued by the concept.

My son is on his waiting list -- please PM me too.

So a question...what do you do if your child has a classmate with strep? Do you add or change antibiotics? Keep them home from school? My son is already on a treatment dose of Augmentin so I'm not sure what if anything we would change due to a strep exposure. What's your protocols?

Interesting article. Thanks for sharing.

Maybe you could try Motrin to start with?

Dr Harumi Jyonouchi has a theory about it. She told me it's most likely to occur with fever due to influenza and chicken pox. Something about resetting the immune pathway. She's very academic so it's hard to follow her sometimes. Also Dr Hollander is doing a study of autistics that display this febrile response phenomenon; looking at the immune-inflammatory response and the inhibition of pro inflammatory cytokines (using whipworm parasites).

When my son was sick with influenza two years ago, every time his fever rose, his Aspergers traits went away...good eye contact, speech was improved, sociability improved, less sensory issues etc. doesn't seem to happen with bacterial infections w/ fever though, only viral. Now that he developed PANDAS we saw a similar improvement when given IV steroids...he again improved beyond what we knew to be his baseline to about 125%. Sadly, like when the fever subsides, we saw a regression when the steroids wore off. We are in the midst of setting up IVIG. Praying we get same effect but more long term.

I had a rather 'interesting' back & forth email exchange with the conference organizer. Was told that a 'leading pediatric neurologist' from Johns Hopkins would be choosing the speakers, so it would surely be an excellent and balanced panel. Sigh, it's not looking good.

There's a holiday inn in Ramsey that has a pool and some good reviews on trip advisor. Don't know it personally but it looks good to me. http://www.tripadvisor.com/Hotel_Review-g46762-d98201-Reviews-Holiday_Inn_Express_Ramsey_Mahwah-Ramsey_New_Jersey.html

I recently added Florastor to my son's regimen and am seeing some worsening of behaviors the past few days...raging; hyperactivity & silliness, but no tics/OCD are back. Could he be experiencing die-off symptoms or is it more likely an intolerance? Any input/advice is appreciated. He's been on Augmentin twice daily with probiotics (VSL#3) mid-day, and before that he was on Azithromycin.

For what it's worth, I shot this email off the other night to the conference organizers. I'm sure it will go nowhere but it made me feel better. Hello, I'm reviewing your conference agenda for Orlando and I have one request. Please do not schedule a session on 'controversies' and include PANDAS on your panel. You do a grave disservice to those children out there who are suffering with true severe auto-immune reactions to strep infections. We do not need any more pediatricians being mis-informed that this isn't a true diagnosis. We parents have been through ###### & have had to travel long distances at great expense to find pediatric specialists knowledgable in this disorder, in order to heal our children. To even refer to it as a hypothesis is an insult. I suspect you have already recruited some of the notorious naysayers to speak on your 'controversy' panel, such as Drs. Kurlan and Singer. They sadly have their own agendas & do nothing but cause our children to needlessly suffer. It's time for the AAP to keep up with the current research and realize that PANDAS is indeed a well-established and complex disorder. Your conference would better serve the needs of the pediatric community by presenting the current evaluation & treatment protocols for PANDAS as developed by the leading researchers at the NIMH. I'm sure Dr. Susan Swedo would be happy to oblige.

In my son's case I had history of allergies and asthma and received allergen immunotherapy for 5 years as a child; also his father had rheumatic fever last spring. (Dr. L helped us realize, as he was initially misdiagnosed) It's rare in adults, but he was a gulf war veteran and we believe some toxin he was exposed to (vaccines; biological agent) triggered an autoimmune dysfunction -- many of the soldiers deployed have similar issues.

Thank you NancyD

My son is on a multivitamin supplement with 400IU of Vitamin D3 and I recently added a separate Vit D3 supplement of 400IU for a total daily dose of 800IU. His level has not yet been measured. Do you think it's an adequate dose? He's 9 years old and 55 pounds. He has PANDAS/PANS & Aspergers. Thanks for any input.

I see my comment was published. I hope she reads it. I only figured out what was going on with my son by a friend sharing her son's PANDAS diagnosis with me. If it wasn't for her tip off I never would have put it all together.

http://parenting.blogs.nytimes.com/2012/11/16/four-hours-of-screen-time-no-problem When she is describing the changes in her son I immediately thought of PANDAS (esp the grunting tics). I posted a comment for her that is awaiting approval. I hope the author reads it.

We recently tried it for two weeks. Hard to tell if t helped bc we had so many other things in play. Had a bunch in the freezer and lost our stock due to a power outage from the hurricane. Not sure if I notice a change off of it.

Interesting conversation. When my son's flare hit I described it as his autistic traits on crack. Every quirk he ever exhibited was multiplied 1000x overnight. And his prior, milder episode last spring, when he started OCD tapping of his fingers and feet and head movements, we attributed to autistic 'stimming' even though he never stimmed before. There is so much overlap I think that's what delayed his diagnosis. I feel like such a bad mom now for missing the obvious signs and blaming everything on 'Aspergers'

I agree! Dr T believes Pandas research IS autism research! It provides a glimpse into the autism world and may provide the answers, he said all this on one of his radio/blog shows! The explosion of "autism" is all immune/gut dysfunction and depending on age of onset and various other factors, depends on where on the spectrum you fall. There still are "classic" cases of autism, but these are few and far between. The bulk of them start out normal and regress into autism in the early years.

Hello all, I'm new to this forum. My 9 y.o. Son was recently diagnosed with PANS/PANDAS and its been a whirlwind learning process for me. He also was diagnosed with Aspergers/PDD-NOS at age 7 and now we are questioning everything. The immunologist we are currently seeing has a research background in both PANS and immune dysfunction in autism. We are beginning to believe that either our son is in this subset of children with immune dysfunction and autism that develop PANS as a related disorder, or that he was totally mis-diagnosed. Last week he received an IV dose of solumedrol for his flare and for a few days EVERYTHING went away, including all of his autistic traits! Sadly it was only temporary but we are hoping its a sign of things to come. His speech improved, he made eye contact, he was calm & connected and social, and he lost all of his sensory sensitivities. Even his handwriting dramatically improved. It was a miracle to see him change so dramatically. Anyway I'm sorry to hijack this thread. I just wanted to say that the more I learn and research and read, the less I feel I know. Everything we believed to be true about our son for the last two years has been turned upside down. Our family has been in crisis mode ever since but I finally feel like we are going to get our son back. Thank you all for sharing your stories online. I've been lurking here & It has really helped me over the past two months.