jdude

My PANDAS son (10) is also asthmatic. When he had a bad wheezing episode in November, he was put on a 10 day prednisone taper. As a side benefit, he was OCD/tic symptom free for 6 weeks after (until next exposure to a lot of strep in the classroom,,that was in January, he is back to symptom free (PANDAS) again (past 3 weeks....fingers crossed....)

It was two weeks to the last day of the 5 day Medrol pack for us. His tics stopped completely at the 14 day mark. Hang in there and good luck!

For those in NE Ohio (I think Pittsburgh as well), Panera Bread is donating all of the profits from the sale of puzzle piece shortbread cookies to Autism Speaks. They are available April 1-8 and you can pre-order if you want. I'm not affiliated with them at all, just noticed it when I was eating lunch there yesterday!

My husband is tired of PANDAS being the excuse for every behavior of my son. He (the kid, not the husband) gets obsessed with doing something (say, X-box or the computer) and when we tell him it's time to get off, he acts very defiant. My husband thinks he's just being a pain in the a** but I think some of his inability to transition well is due to his PANDAS. He does much better with a warning, and some reminders (i.e. you need to get off in 10 minutes...five minutes), where my husband just says "get off now" and turn the thing off which results in a meltdown. LAst spring when he started this constant potty talk I didn't attribute it to PANDAS as his friends seemed to be joining in quite a bit (maybe they were following his lead), but then he stopped and it started back up again when other OCD behaviors came creeping back, so now I'm thinking it is related. Then yesterday my son started making a weird noise with his mouth, I quickly turned around and he looked at me saying "what are you looking at, I'm recording sound effects for my DS game" (where he can draw an animated cartoon). I'm starting to think I'm going crazy, and maybe it doesn't matter, except when I'm keeping track of symptoms and flare-ups, it's hard to say what is just due to being stubborn, or a kid, and what is PANDAS related. The typical OCD behaviors are easily identified, however, the defiant behavioral attitude is a little trickier to pinpoint.

the problem with my son is that he does not do anything that is not "normal" for his age... he just does it with such frequency and such intensity that it is dysfunctional! WOw, that is my son to a "t"...everything he has done, was done with "gusto" and complete obe\ssession...Thomas the Tank Engine, Club Penguin, and now X-Box (he's almost 11).

Before logging on today, I was going to ask the same questions...to IVIG or not to IVIG. My son (will be 11 in June), started showing symptoms last May (started with OCD hand rinsing, morphed into more tics, separation anxiety). The worst was in September/Oct when he was ticcing quite a bit, even at one point writhing on the floor. He started doing much better after a 5 day Medrol steriod burst, then was symptom free for 6 weeks (during which time he had another steriod taper taken for a severe asthma attack). Around Christmas, symptoms began again, this time OCD (hand rinsing, which went away and was replaced by touching objects several times), also noticed a change in handwriting. His PANDAS doc (neuro) recommended a change in antibiotics, which he's been on two weeks. Still has OCD behaviors, but I have noticed a significant improvement in his handwriting. She recommended IVIG as the next step if little or no improvment with this antibiotic. Compared to some on this board, his symptoms are mild. He functions quite well in public and does very well in school, no raging, no inappropriate behavior, just the OCD, and obsession with "potty" talk and handwriting (which as I said has recently improved). She feels that IVIG may blast lingering antibodies that continue to attack his basal ganglia. If I knew for certain it would help and knock the bad stuff out, I would do it in a heartbeat, but considering how relatively mild his symptoms are, I am wondering if it is worth the risk.

I know what you mean about the "acute" thing. The first neurologist I visted did believe in PANDAS (but had no clue about treatment), but he felt my son's symptoms weren't "extreme" enough to be considered PANDAS. At that time he had just finished a 20 day antibiotic treatment and his symptoms were way lessened. Even now with his recent symptoms, the average person wouldn't notice unless they spent time in my home...he keeps his OCD in check at school, but at home it's a whole different story.

Dr. Phil had a show today about an overworked, overstressed mom and extremely unhelpful Dad. In the midst of this, one of their kids (he looked to be around 10) was exhibiting OCD behaviors, ritualistic licking of things, etc. Dr. Phil attributed it to anxiety from the stressful environment, which may very well be. But me, I immediately think "could this be PANDAS??". The mom also runs an in-home daycare, so the exposure to germs is more prevalent than the average home. I'm starting to think I see PANDAS everywhere....

Thanks everyone for your responses. My son is 10 (will be 11 in June). He did seem to respond to the 1st steriod burst, which is why I'm disappointed it didn't work this time. I do worry about the prolonged use of steriods, since he has also received them for asthma symptoms. So far it doesn't seem to be affecting his growth. I see Dr. R this Thursday. I believe he does have PANDAS as his relapses occured after known strep exposures. However, I figured it wouldn't hurt to rule out/or in as the case may be, Lyme , since that wouldn't be farfetched considering the deer population here, or other underlying infections.

I posted back in December about how well my son was doing (shouldn't have jinxed it I guess), then close to Christmas, the OCD symptoms started back up. Background: His original symptoms started last May...started with OCD, then went to tics. After a 20 day course of Augmentin (for sinus infection), the tics subsided significantly. In the meantime, we visited one neuro who didn't really think it was PANDAS despite ASO Titers being high (normal range for test was <100, his was 200). Went to only known PANDAS doc locally who felt it was PANDAS and put him on Zithro (started with 10 day course, then 1X week thereafter (2 250 MG every Sunday). Tics were significantly worse to the point of writhing on the floor at one point. Did a steroid burst. 2 weeks later no tics. Then one month later he was on another steroid for a severe asthma attack (10 day taper). It was during this time he was completely symptom free. This was about a 6 week period. Around Christmas, he started with hand rinsing (not washing, he just briefly wets them constantly), this has now been replaced with constant touching of things..people, objects, and it seems to be a certain number of times (I counted, it changes). We were playing a board game the other day and he had to get up several times to "touch" certain objects. I also noticed his hand writing is significantly changed. He always had very neat printing and hand writing. Now he doesn't even attempt cursive and his writing has regressed...it's large, light, and very "young" looking. He does seems a little "hyper" and also has an obsession with talking "potty" talk and "sexual" thoughts..more along the lines of talking about body parts. Despite this, he sleeps quite well at night and does very well in school. It doesn't seem to be affecting his attention (his past three tests he got 100%). His teachers have not noticed anything unusual in class, so he's keeping his OCD in check there. We recently did a 5 day course of Zithro...no change. Then a 5 day steriod burst two weeks ago. No change. We have another appointment with his local PANDAS doc this Wednesday. I'm thinking 1), the prophylactic dose isn't enough 2) we ought to consider other underlying causes i.e. Lyme (we do have a lot of deer around here), and 3) perhaps it's time to visit one of the PANDAS experts. It would be about the same drive for us to visit Dr. K or Dr. Latimer. Any opinions on which would be better?

Last night when talking with my mom on the phone she asked me if I'd seen this show. SHe had nopticed his eye blinking and her first thought was "could this boy have PANDAS?". I will e-mail the show as well. Just think what a dedicated Oprah show on PANDAS could do...

This is too eerie...my older (non-PANDAS) son, age 13, who knows everything, was looking PANDAS up just the other day in Wiki and he focused soley on the piece that states it is "controversial." He just thinks his brother is acting up (although I did have a long talk with him, made him watch "Mystery Diagnosis", and read several other articles). My PANDAS child is a somewhat mild case compared to others on this board, but he is currently displaying some "behaviors" like lots of potty talk that I now attribute to his PANDAS (he had this obsession when he first displayed symptoms, and it went away when he was symptom free). After reading the article, I was kind of annoyed at the focus on the "controversial" aspect as well. Although Wikipedia can be informative, it is not even allowed as a reliable "source" in my older son's school when kids are reasearching topics. It is a helpful tool in obtaining other sources, but teachers won't allow Wiki as a source due to several innaccuracies.

I wouldn't rule PANDAS out just because he doesn't have all of the symptoms. My son (age 10) started with mild OCD, then tics. He was also clingy and somewhat moody, but that wasn't unusual for him (he's always been a tad moody). He never had any sleep issues either, and has not had any focus issues, he has been doing great in school. It was when the tics (that actually seemed more OCD as they were in a pattern) got worse that we suspected something medical was causing this behavior. i took him to his Pediatrician and demanded bloodwork to check ASO titers, Anti DNase. etc. The ASO titers came back high. He showed vast improvement after a 20 day course of antibiotics for a sinus infection (in August). He was diagnosed with PANDAS in September. We have had ups and downs...he was completetly symptom free for a 6-7 week period, then a lot strep was going around. I agree with everyone else, it doesn't seem like coincidence to me.

I've often wondered about this as well. When my son had what we called tics, it seemed more of a compulsion. I say this because most had a specific pattern, head turn, arm movement, mouth movement. It was always the same pattern. I'm not sure it makes a difference except perhaps that could be a way to eliminate other possible diagnosis's (e.g. Tourette's).

My DS,10 was diagnosed in September 2010 (symptoms began May 2010). He is currently takes Zithromax-250 mg/2 times once a week. After reading this forum, it seems this isn't as much as others are taking for a prophylactic dose. When he has a known exposure, his PANDAS doc will increase to 5-10 days of the antibiotic. He was symptom free (after a round of antibiotics and a steriod burst) throughout November and most of December. Around Christmas, the OCD came creeping back (hand rinsing), I cntact his doctor in early January and he was given a 10 day course that ended over two weeks ago and we have seen no improvement. The hand rinsing has waned, but new behaviors have emerged, avoiding eye contact, touching objects twice, walking around rooms in circles. In public, he can keep it together, we were at a Superbowl party and he was able to keep his behaviors in check. I've heard through other parents that strep is running rampant through our schools, and it seems his current dose isn't cutting it. For those taking a prophylactic dose, what are you taking and how often?

We did a 5 day burst back in October when he tics were exploding. 2 weeks after, all tics stopped. He is just starting some behaviors again, and the antibiotics didn't seem to help, so we're considering another steriod burst. I share your concern about long term steriod use. He actually has asthma, so has been on steriods before for that.

The PANDAS doctor we see is a neurologist. At the initial visit she did an in-office neuro screen and also ordered a CT scan (to check for inflammation and also to rule out any other issues).

I am certainly no expert, but this is what we've been through with my son (age 10). Although the start of this whole PANDAS thing was OCD behavior in May 2010 (rinsing of hands), it morphed into mainly tics over the summer. An initial 20 day course of Augmentin (given for a sinus infection) helped those to subside somewhat. However, a month later they started up again worse than before. It wasn't until we did a 5 day steriod burst that the tics subsided completely. It took about 2 weeks after the steriod burst. He also was taking Clonidine in conjunction with that for the tics. The Clonidine makes him sleepy, so it was given to him an hour before bedtime. Since early November, he has had no tics. Recently he has started up again with the hand rinsing, we're on an extended antibiotic course since there is strep galore around the school.

My son starting the frequent hand rinsing thing again and due to it being winter and the fact that he doesn't fully dry them, his hands are really chapped. We use Vaseline or Eucerin at night. He also likes wearing these Spa gloves of mine that feel rubbery inside and make his hands look like "Mickey Mouse". I imagine not all kids would like the feel of these, but he does and they really help (from Bath and Body Works).

Back in October, my son was exploding with tic behaviors. We did a 5 day Medrol pack (steroid). Two weeks later the tics lessened considerably. We were tic free all of November. Was it the steroid? I don't really know, he was also taking clonidine for the tics, but it wasn't until after the steriod that they stopped. He was doing great until recently, when OCD (hand rinsing) started up again. Still not tics, but I'm reluctant to do the steriods again for the hand rinsing (OCD), only because he also has asthma and was on a 7 day course of steroids the week before Thanksgiving. I'm concerned about the long term affects of too many steroids. I am curious about the ibufrofen, how much do people give? My son is 10 and about 80 lbs.

My son, age 10, starting OCD symptoms in early May of this year. Spoke w/school psych who mentioned in passing a possible strep connection, but we didn't consider as there is family history (my MIL has phobias, and what I was told was OCD, later determined not to be OCD). On a vacation in July noticed many new tics, extreme clinginess, behavioral regression (acting much younger). My husband said, this must be something medical, I remembered what the school psych said and did a lot of research. Came up with PANDAS-Bingo! Went to our pediatrician, who agreed to run the blood tests. ASO titers were high...he referred me to neurologist. Neuro thought it was Tourettes, said there wasn't really treatment for PANDAS. I knew better because of this forum and Beth Maloney. Looked at doctor list and made appointment w/Dr. Reed here in Ohio. She explained difference between PANDAS and Tourettes and why she felt this was PANDAS (no previous tics, no ADHD). She put us on Zithromax, a 10 day course to start, then 1x week prophylatic. This was end of September. In early October, ticcing was worse, constant. She gave steriod burst and the next week my son's teacher notified me there were two confirmed case of strep (aha-that is why the tics were worse), increased Zithro. As of Halloween...no tics, no OCD. Knock on wood he is doing great. However, when I hear of doctors still questioning the PANDAS diagnosis, I want to shout...look at my son, explain how he is doing so much better now!! I feel so fortunate that this information was available and out there so he could be diagnosed relatively early. Thanks to all of you. I haven't posted much, but the information on this forum proved so valuable to my son and my family!!

My son (10) was put on a steriod burst (medrol pack) starting 10/14 as his tics were really increasing. The next week his teacher e-mailed me to notify of 2 confirmed cases of strep in the class. He went on a 3 day Zithro course (his doc has him on a 1x week prophylatic). His doc said the steriod burst can take a couple weeks to start having effects. It is now two weeks after the steriod burst and starting Saturday (10/30), we noticed no ticcing. Zero, zilch, none. This is a huge turnaround from two weeks prior when he had writhing on the floor episodes along with practically non-stop tics. No OCD symptoms either...hoping this lasts!! (BTW all of this started in May, so I'm hoping that due to early intervention we can keep it from progressing).

My son has never had a problem with the flu shot, then again the PANDAS symptoms just started in May, so this will be the first year with PANDAS that he gets the shot. And yes, he will get it as he has asthma and was hospitalized one w/that. I figure that first and foremost, breathing comes first. If he didn't have asthma, I probably wouldn't get it. Somehow I survived w/o ever getting a flu shot until I was an adult w/kids (I get it since no one allows mom to be sick).

My son, who was just diagnosed by a pediatric neurologist with PANDAS, started out w/mild OCD symptoms, then the tics started, which is what got my on the path to thinking it was PANDAS. Anyway, the tics were got better after a 20 day dose of augmentin (given by my pediatrician for a sinus infection, I begged him to extend the normal 10 day course). After a week or so off of that, the tics came back, but not terribly bad..they were fairly far between and subtle. We finally got in to see a doctor in NE Ohio that does treat PANDAS, she put him on a 10 day course of Zithromax, then a 1x per week prophylactic dose (250mg 2x one day per week). His tics have exploded in the past week and a half...he is constantly ticcing..I'm concerned it will affect his ability to concentrate in school, although so far he seems to be doing well in that regard. The doctor prescribed a medrol pack (steriod) and also chlonidine for the tics (haven't started that yet...waiting to see if the steriod burst does anything). She feels it's PANDAS v. Tourettes due to the sudden onset, plus he has had elevated ASO titers since testing in July. I appreciate you asking this question as I'm trying to figure out what the next course of action is.