nicklemama

I second the florastor recommendation. My DS has been on antibiotics for a year and has taken florastor during the entire time. We've had no problems. My DS had IVIG in May of this yr. He was 7.5 then. Five when this PANDAS business started. IVIG will not get your DS off abx. My DS will be on abx until at least May and then, probably for some yrs to come. I've sent you a PM about BCBS PPO. Check the upper right hand corner of the page.

We've been using Melatonin 0.5mg nightly for over a year now. My DS7 still has a lot of difficulty settling in and falling asleep w/out it. He had IVIG in early May and is on 250mg augmentin sid, 2000iu vit D, multivitamin, 200iu vit E, 500mg vit C, 1500mg omega 3 fish oil, 18.75mg bid lamictal(reducing it to get him off) and florastor bid. I forgot to give him his melatonin on Monday night and after watching him fidget and toss and turn, I realized I'd it. Gave it and 30min later, he was out. We just haven't been able to get away from the melatonin and I feel he needs his sleep rather than spending 2hrs tossing and turning until he's exhausted. I had hoped the IVIG would have helped w/ his falling asleep but it hasn't. Its helped w/ so much else. DS is in a very good place right now (knock on wood). I'm hoping he won't need the melatonin for more years.

This is a revelation to me!!!! My DS has had "pimples" on his face in the past. Just little pink things. They never weeped or crusted over or even broke open. Just eventually went away. Do you think that was impetigo? Strep impetigo? DS has never had strep throat. We've been sort of looking for the strep. He had an ear infection and we thought maybe that was caused by strep, but all this is in hindsight. Since we've known he has PANDAS, we have not caught him w/ strep nor has he shown titer rises. Of course, he's been on abx since dx. Interesting.

I thought impetigo was weepy lesions. Are you guys telling me it can look like small pimples?

I would invite you to come over to the PANDAS/PITAND board and explore the symptoms of your DS. The sudden onset, the ocd and tantrums and tics sound very similar to PANDAS. In fact, while I'm no doctor, I'd guess its very likely your son has PANDAS.

WorriedDadNMom- I sent you a pm. Check in the top right hand corner to access the pm's.

You can have a strep infection and show no signs of infection. Don't ask me how. I don't understand it. At this point, just being around someone w/ strep increases my DS's behaviors, even while he is on prophylactic augmentin and does not actually get sick. Fortunately, so far, its just minor flare ups. Your younger son sounds like my DS's initial PANDAS presentation. It was never documented as strep. He had very similar behavioral symptoms as your son did, after he had an ear infection. We did not recognize it as anything more than a phase or a reaction to Flonase that was prescribed. Our son had just turned 5. The big exacerbation that was severe occurred 9 months later, after Flumist. I don't know what is prescribed for toddlers w/ PANDAS. I'd guess treatment would be the same as for a bit older child.

LOL, I never made the connection until I read your reply. Yes, that is exactly the time line. Dec wart removal. Jan ear infection, then some milder PANDAS symptoms that we totally did not recognize. He was irritible and difficult for a few months. If he had OCD, I cannot say. I don't remember any but I really did not understand OCD in kids. He was given Flonase at the same time as the ear infection and we thought maybe that was the cause of his behavior. We stopped the Flonase several months later and the behaviors subsided as well. Turns out, that was coincidental. Dr K told us this milder episode was his first PANDAS episode. We had no idea what was brewing and how that would explode in Oct of the same yr. Dr K believes strep caused the ear infection but we have no concrete proof of that. I really don't think the wart removal and blistering agent caused the PANDAS.

My DS was diagnosed w/ Aspergers at age 6y9m during an ongoing PANDAS episode (we didn't know it was PANDAS) and just a few weeks before Dr T diagnosed him w/ PANDAS. I'm telling you, he had a LOT of Asperger's behaviors. I almost bought into it. He was NOT Asperger's before Flumist and PANDAS. I read about the glutamate and ASD like behaviors w/ a lot of interest. DS was taking 50mg bid of Lamictal when he was diagnosed Asperger's. The lamictal did nothing to curb any of the Asperger like behaviors. It did dampen his irritibility and anger. Still had the OCD, no change in that. He was also ticcing badly by the time of PANDAS diagnosis. We are currently weaning him from lamictal (its slow) but I don't want to miss anything so I keep reading anything and everything put out there about glutamate. He has lost most of his Aspergers behaviors. He still has some trouble w/ social skills but nothing like before. Abx and IVIG have really turned him around.

My DS also had IVIG in May 2011. He's had three exacerbations since and all were directly related to exposure to kids w/ a known (after the fact) strep infection. We bump his abx up to treatment dose for 7-10 days as soon as each exacerbation starts and it calms things down.

Ok, its not the same as a blistering agent. The blistering agent causes the wart and skin around the wart to blister. This causes the body to send its agents to the area to attack it and get rid of it. Left no scar. It did not hurt DS. The freezing did. He was not quite 5 at the time and just gritted his teeth and took it. Two months later, ear infection and PANDAS. Our lives have never been the same.

I would second the Zymaderm recommendation. My friend used it to rid her kids of molluscum. The dermatologist was amazed at the results. Is the squaric acid a blistering agent, by chance? My DS had a huge wart on his knee (prePANDAS). The ped froze it and used what she called a blistering agent to "aggravate the area so the body would help rid itself of any wart left after being frozen". She said we might have to come back a few times but all it took was once w/ the combo of freezing and blistering.

My DS was sudden. He woke up one morning irritible, angry and raging. The OCD and other behaviors seemed to pop up over a period of weeks afterward, so we caught it, but, unfortunately, no doctor did. What bothers me is many doctors require active strep surrounding the episode to diagnose, which my DS does not have. His exorcist episode occurred after Flumist. He has, in fact, never tested positive for strep or anything else. I believe this fact kept him from being diagnosed for a year. I actually saw the Mystery Diagnosis episode in fall 2010 and the light bulb went on. Dr K pointed out the original episode occurred 10 months prior to the exorcist episode that caught our attention. He had an ear infection and was irritible and somewhat difficult for several months afterward. We attributed it to a phase or the Flonase he was prescribed.

If my husband can't go, its just me, unfortunately. My husband has gone to all the appt's w/ Dr K. Local appt's, he normally doesn't go. I don't ask him to because I want him to have available time for our out of state appt's. I have no family anywhere near me, so I'm on my own when Dh doesn't go.

Anger, raging, aggression was the initial presentation for my DS, then came the ocd w/in a few weeks. Tics started a yr later. We see flares of anger now when he is exposed to strep, but no more raging(knock on wood)since starting abx. He has not had a known case of strep since starting abx. We suspected he had strep back in early August. He had some behaviors and a fever for a day, plus stomach ache and headache but his rapid test and culture were negative, as were ASO and antiDNAse B. Within a few days, it faded away.

I highly recommend getting a probiotic started. One of DS's PANDAS docs recommended Florastor that Nancy mentioned. My DS has been taking Florastor 2x a day w/ his abx for a yr now. No diarrhea. No gut issues.

This increase in symptoms may be a herx reaction to the killing off of bacteria. I would keep at it and see how it goes. Augmentin does not seem to do this to my DS but he once had a herx reaction to amoxicillan(prePANDAS)when he had an ear infection. He got really irritible and had some tantrums.

I just started out w/ a very low dose and it worked and we've kept it that way. At the time, DS was 5.5yo and could not swallow pills. I found melatonin at Trader Joes that is chewable, 0.5mgs and has a mild spearmint flavor. I got the ok from his pediatrician, neurologist, neuropsychologist and psychiatrist (yes, we've been around the block like most here, lol). I was told he could go as high as 3 or 4mgs but I didn't want to go that high if I didn't have to. In Oct, it will be two yrs since we started melatonin. It really saved us our sanity and some sleep and he still takes the same amount, even though he's now 7.5yo and weighs 7 or 8 lbs more. He was probably around 50lbs then. He currently weighs 57lbs. He's gained weight since we got the PANDAS treated and he eats better. You can get just about anywhere in pill form. Target, CVS, Walgreens, you name it.

We've been using melatonin for our DS for nearly two years now. He takes 0.5mg each night, 30min before bed. It helps him fall asleep but does not keep him asleep. He had terrible sleep issues. It took him hours to fall asleep, due to his fears and anxiety. Melatonin cured that. If he wakes, he will usually go right back to sleep. However, he was coming downstairs in the middle of the night and getting in our bed. We allowed this because we were exhausted from taking him back upstairs several times a night. IVIG in May really helped w/ the sleep issues, but weirdly enough, I think the lamictal he's been on has been contributing. We are tapering him off it. He's gone from 50mg bid to 25mg bid over the last nearly two months and he's mostly sleeping through the night now!!!!

sebrown- pm'd you w/ the MI PANDAS info

Woohoo, you may have found a diamond in the rough. Please update the Michigan group. Not all read the posts here. This is such great news, as we struggle to find treating docs in our state.

I'll follow that up w/ two PANDAS docs believe my DS was pushed over the edge by Flumist. Unbeknownst to us, he was displaying minor PANDAS behaviors after an ear infection in Jan 09. Those went away after a few months and we chalked it up to a "phase". Oct 09, two days after Flumist, our then 5yo son was severely impacted with what we now know was an exorcist presentation of PANDAS. Took us a yr to get a proper diagnosis. Today, he's doing pretty well after 6 months of HD abx and then IVIG in May, now on prophylaxis. STAY AWAY FROM FLUMIST.

Four yr olds can receive Flumist. My DS had Flumist at age 4, w/out complications and then again, at age 5. BIG mistake.

I second Mary. PLEASE, go to VAERS and do a self report. I did. My son had a reaction to Flumist in Oct 2009. Sudden OCD, fears, anxiety, raging, severe separation anxiety in a little boy who was as 'normal' as the next before the Flumist. All started 2 days after Flumist. He was 5.5yo then. It took me a yr to figure out what was wrong w/ him (because none of the local doctors and specialists we saw could say other than he was suddenly mentally ill) and then I had to find someone to treat him. My DS has PANDAS. The tics didn't start until a yr after the Flumist episode.

I hate to be the bearer of bad news but you are going to have a hard time finding help w/ the locals here in MI. Wish I could have better news. Most of us here have been from dr to dr. No help. Call a PANDAS expert. Dr K in Chicago and Dr T in New Jersey do phone consults. Dr B in CT is an immunologist. He doesn't do phone consults. Don't know if Dr L is taking on new patients at the moment. Please understand, strep confirmation is NOT necessary for a PANDAS diagnosis. My son has never had a confirmed case of strep. He was never tested in a timely manner when he presented w/ pharangitis symptoms. He has never had anything but normal strep titers, either. He has been diagnosed as having PANDAS by Dr K and Dr T. Don't give up and don't let a pediatrician who knows little about PANDAS deter you.