fsilverpsych

Hello, Graph 2 was spot on for us. When we look back, one year prior to DS6's first major episode, there were some mild to moderate symptoms (I attributed it to genetics and age- he was 3.5 then with mild ocd and anger). One year later (following the regular flu vaccine, getting strep, swine flu, and then strep again in the course of one month... we had the first major exacerbation within the next couple of months. Even with treatment (abx and a couple of steroid bursts/tapers; then tonsillectomy/adenoidectomy; and now prohylactic azith.), we have never quite returned to baseline (or like in graph two, the baseline seems to get just slightly higher with each episode). Francine

So sweet to read that!

Hi. I just posted recently (not sure how to repost) on having "trouble lowering the azith. dose." It's in the recent archives. The reason I wanted to post was because you said your daughter is not tic-free or free of mild ocd on a low dose of azith. This sounds very similar to my son (age 6, dxd at 4.5). He does his absolute best (almost tic-free and almost ocd-free; and free of all associated sxs such as enuresis, separation anxiety, drawing deterioration, nighttime fears, etc.) when he stays on the full strength twice/day azith. (for his weight- I think 42 lbs, he is on 200 mg twice/day). The problem is everytime we try to wean to once/day, his tics/ocd/associated sxs return. His recent liver function tests were normal and I sometimes wonder why I am even bothering to try and wean to a prophylactic dose when it clearly does not work. All I know is full strength azith. has worked great for him... Good luck, Frannie

Hi... just rechecked... I think NJ only requires the annual flu shot for pre-schoolers and those in licensed day care centers (as of 2007)... which would affect some of the younger kids on the forum. I lucked out with a great, private daycare (which is licensed) but did not make me get the kids the flu shot. Sorry if I freaked any NJ residents out with the last post... but it would still affect younger kids who go to pre-schools that will uphold this mandate. Frannie

Hello, My son Jack (now 6) was diagnosed with PANDAS at 4.5 years old. He has done wonderfully on azithromycin 200 mg twice/day (bid). This was following an initial trial of a different antibiotic and a 5-day steroid burst (worked great). We didn't keep him on long-term abx (at first!). After multiple episodes of strep with subsequent abx 10-20 day courses (he also has mycoplasma), we also did a month long steroid taper one summer. This kept him symptom free for several months (until the next strep episode, of course!). Finally, after so many brief trials of abx and back-sliding with each discontinuation- we finally realized he benefitted from staying on the abx and he's been on azith. in the above dose since Nov. 2010. We prepared him for an April 2011 tonsillectomy by giving a course of clindamycin before the surgery and maybe one week after... followed by immediately going back on the full-strength twice daily dosage of azith. The tonsillectomy went great and we haven't had any strep since. However- every time we even try to reduce the azith. to even a once/daily dose- he starts to have symptoms (his symptoms have always been relatively minor- a few tics at a time, some obsessive rumination- mostly at night, which makes him scared to sleep, some compulsions, emotional lability and sensitivity- along with separation anxiety- however, all still relatively minor and manageable, and finally some day and nighttime wetting- oh also, handwriting and drawing deterioration... basically, all of the classic PANDAS symptoms- just currently mild and manageable). Even though his symptoms are manageable- we hate to see him suffer (e.g. the nights are so sad as he is writhing in his bed, afraid to sleep b/c he can't get images and thoughts out of his head). Dr. T did some recent blood work (which all looked pretty good)... however, given the past mycoplasma issue, he wondered if maybe there was still a chronic, underlying issue... preventing us from slowly titrating down on the azith. He recommended a 10 day trial of clindamycin- which worked great at reducing Jack's sxs even further before his tonsillectomy. We stopped the azith. and started the clindamycin... by day 8, all we have noticed is a return of his PANDAS sxs- albeit, still mild... but very noticeable to us and even to him (even though he still doesn't know what "PANDAS" is, he knows his body feels "weird" and that he is having the nightmares again (it's actually more rumination before sleeping than actual nightmares). Are any other kids SO sensitive to azithromycin only?!! Are we destined to keep him on such a high dose? I was hoping to have him on a maintenance dose (which Dr. T said would be once/daily only twice/week... we can't even seem to get to once/daily!!! Any thoughts?! Thanks in advance, Frannie

Hello Eileen (DC MOM)! It's Frannie- from our NJ support group. I was checking back in specifically to see if you had any success with the NJ Vaccination issue. My son Jack (going into 1st grade after 1 yr in a private kindergarten), might not have a problem this year... b/c he is making titers to MMR and I think he is up to date on the rest... actually- we will have a problem given that NJ is one of those few states that REQUIRE an annual flu shot as well. His PANDAS episode started after having the flu shot, getting strep, getting swine flu, and then strep again- ALL in a month and a half's time. Needless to say, I don't want him getting vaccinated or getting the flu shot anytime soon! Hope it went well for you and the girls. Frannie

It's so interesting how so many of us see these odd symptoms. My five-year-old son had massively peeling feet for a week or so... I googled it and saw that there could be a connection to strep/scarlet fever and immediately thought my Pandas son must be having some sort of strep-related reaction... so I take him to the Dr... they asked me if he wore socks at night (he usually did)... they recommended stopping that and given that his strep test was negative (and there were no other symptoms), just told me to keep an eye on it and come back if it kept up. Stopped the socks at night and it immediately went away... go figure. So even though this didn't turn out to be a big issue for us, it still has me wondering what it is about our PANDAS kids that they all get these mysterious symptoms (e.g. even if it wasn't indicative of a bigger problem this time, is it something about their immune system, gut health, etc... that leaves our kids prone to all sorts of weird issues?). As a baby, my son had ecxema, lots of heat rashes... he also has mild asthma (which is getting better as he gets older). My four-year old son who also wore socks at night, gets strep a lot too (and has asthma) but does not have PANDAS, does not have skin issues, or peeling feet etc. But yes- the peeling feet did worry me at first! Frannie

I also have enjoyed her videos! My child is half Jewish and half Irish... so that was interesting to hear from Dr. Schulman... however, I also agree with EAmom that many go undiagnosed. As soon as we had an early-onset OCD, I started scouring the internet and found out about PANDAS within a day. That's my neurotic, susceptible to Jewish- guilt side (lol)- must learn, must fix... immediately! Francine

My five-year-old had his tonsils out in February... and we sterilized them with Clindamycin... Dr. T recommended that (and although both the ENT and our Ped. didn't think it was necessary, I went with Dr. T's opinion). My son did great pre and post- tonsillectomy. Interesting to note: my son's behavior dramatically improved the week before the surgery with the stronger antibiotic; he's been on full strength azith. for a number of months now. We kept him on full strength azith. following the surgery (for him that was 200 mg 6ml twice/day). He's been doing great since the surgery (albeit on full strength azith)... he still has some tics- tends to get about one or two at a time- they disappear and and a new one replaces it (e.g. a cough tic left to be replaced by a hand licking tic). However, we just switched Jack two days ago to the same dose but only once/day... Maybe I'm too vigilant, but I think he's acting goofier and more hyper already... he also just demonstrated more tics at once at bedtime (cough tic, hand licking and scratching at the palms of his hands because they constantly feel "itchy" to him). I hate the idea of staying on high dose abx for so long... but it does seem that every time I try to reduce it, the symptoms get stronger. I'm still very glad we had the tonsillectomy... he had positive cultures for strep 6 times in the past year with associated changes in behavior. The surgery went well, the recovery period was much easier than I expected, and with that much strep I think it was warranted. We also did his brother at the same time since he needed his third round of ear tubes (and already had adenoids out with the second round)... he also had the same great recovery. But as I knew before I did this, it isn't a cure... and we still need the antibiotics- and in strong doses, it seems. Francine

I have been worried about the possibility of my son developing Type I diabetes for a number of years now- even before I found out about him having PANDAS/PITANDS... (re: Lymes, his western blot is negative except for band 41)! My brother and father both have Type I diabetes... they were diagnosed at 19 and 21 respectively. My son with Pandas takes after my brother so much (in looks, temperment, etc.). Given that having one autoimmune disorder can predispose a person to developing others, I have grown more concerned (I've seen firsthand how my brother and dad have suffered- but I do have to add that neither takes the BEST care of themselves). My two sons have been tested for diabetes and they are both negative... but I've done some reading on possible ways to prevent Type I diabetes... the book I have is How to Prevent and Treat Diabetes with Natural Medicine by Michael Murray, N.D. They give suggestions including avoiding nitrites (I now only give my kids nitrite-free turkey, ham and hot dogs which are very easy to find in regular grocery stores like shoprite and pathmark in NJ); using an elimination diet to test for food intolerances (the standard milk, wheat, corn, soy, eggs, etc). I've yet to make the big move to trying a casein and gluten free diet but I feel in my heart I should; also, the book recommends supplements including fish oil (which makes my son tic more), vitamin D, and probiotics. Francine

Yep- son with band 41 positive also. I remember Dr. T was not surprised about this when we first saw him one year ago... I know he is the only doctor I have ever met that actually is a true scientist as well. He really does want to understand this disease, as compared to "just treating". I know some of the the Dr. T posts were closed... but just my two cents... he is worth it... a little hassle re: getting messages through has been worth the time he gives when we see him (what doc comes in on Sunday and then spends an hour and a half with new patients (and even on subsequent visits?!). Hope he figures out the band 41 issue and what it means for our kids! I haven't pursued Igenix yet... but I'm sure I will pursue it at some point soon... no stone left unturned?! Frannie

Darlene, sorry this will be long... To answer your question: Jack was a somewhat colicky baby (not the classic screaming 3 plus hours per day)... but just fussy enough... we used to let him sleep in his car seat overnight because it was the only way he'd sleep contentedly... I used to worry about his neck/head but our ped. said we weren't the first to do this and we wouldn't be the last! He wouldn't take a pacifier and I used to have to let him suck my little pinky for what seemed like hours to soothe him. He had a lot of early ear infections, bronchiolitis, and ultimately asthma (which he still has). We had our second boy when he was only 13 months old... and from early on, you could see they had very different temperments... Jack is more like me and my family (neurotic!!)... and his brother Charlie is like his father (easy going and laid back)... interestingly, they BOTH get a ton of colds, infections, etc. Charlie has had two ear tube surgeries and an adenoidectomy with the second; after about 12-15 months, the tubes start to come out, and he starts getting ear infections again. His just stopped functioning and he's had three ear infections already... so he'll likely be getting his third round of ear tubes and I might as well get his tonsils out... since he's had strep almost every time Jack has... Jack will also be getting his tonsils/adenoids out. But... whereas they both get a ton on infections... only Jack has PANDAS (and it seems that he just has the genetic susceptibility that his brother doesn't. All of these years (well, he's only 5 and a half!), my husband and I just figured Jack had a more sensitive temperment and chalked up a lot of behaviors to that...e.g. at 1-2, he was just a fussier baby (no major tantrums... just more easily startled, more easily annoyed, less willing to share than his younger brother, more frustrated when something didn't go his way). Oh- and a pickier eater! At 3, we noticed more of the same and by 3.5 he had some more major anger issues... e.g. spitting and some mild hitting when he was upset or told No to something. He would also growl when angry (and although fussy... he wasn't an angry kid... so we chalked it up to just a phase... I think now it was some Pandas episodes b/c it really came and went episodically. He is competetive and rigid (likes to follow the rules). At around 3- 3.5, I also noticed that he would throw a drawing away if there was one thing he made a "mistake" on... he couldn't just continue to draw like his brother... he had to completely start over. He was a thumb sucker until age 4 (and don't laugh but I actually used the sensitivity to rules in my favor by telling him 4-year-olds aren't allowed to suck their thumb anymore... it worked in 2 days! But since he had a sore spot on one thumb from the years of sucking, after he stopped, he started rubbing the spot over and over until it became more sore. At 3.5 he had a brief period where he wouldn't step on cracks (my brother did this as a kid too!). But this too passed quickly... my thoughts at the time were that we would one day be dealing with some minor anxiety and even OCD issues (given the cracks issue, wanting perfectionism in his drawings)... but honestly, I thought I'd be dealing with it at age 12, 15, 20, etc... more classic ages for OCD to hit. I had some minor OCD tendencies in high school; they were present but not debilitating... and I figured I'll just help Jack deal with that when the time came. At age 4, he got hit with strep, swine flu, and strep within a month and a half period (in the Fall). By March, my DH noticed a strange symptom appear... palilalia (whispering his words right after he said them aloud)... just like the little boy on THe Middle. That was the symptom that got our full attention...in what then seemed like overnight... but was probably over several weeks... a few more classic OCD and tics started all at once. He had the palilalia, he wanted to count going up the stairs and start over if it wasn't right, he wanted to kiss me 100 times before bed, he started the business with not stepping on cracks again, he starting sucking furiously on his collars, zippers, and shirt sleeves (previously just did that a little); He couldn't stop itching his nose (a tic), and he developed a cough tic (we ruled out an asthma cough with his pulmonologist- even she said this was a tic); he also asked if he could touch my watch with his other hand b/c he had apparently touched it with one hand and wanted the symmetry (I thought, oh no... I had a symmetry compulsion in high school!); what also alarmed me is that he started to have very jerky, hyperactive movements, especially at night... he couldn't sit still to listen to a story... he was jerking all over the place; sometimes with eyes rolling in his head and grimacing. Oh- and he LOST complete ability to draw pictures... he literally went from being a really good, detailed artist for a 4.5 year old (I mean, he's not Picasso..!) to drawing stick figures and scribbling odd shapes... he was aware that he suddenly couldn't draw and that was sad. Finally, he also starting wetting the bed after being recently trained at night... he has had urinary frequency for years... which were probably early Pandas symptoms. Oh- also started with these "super silly" behaviors- saying nonsense words over and over and louder and louder; repeating words like butt and penis; also, getting attached to new stuffed animals and a little more clingy to me when saying goodbye in the morning (e.g. needing to give multiple hugs and kisses (and of course, he wanted to give just one more than Charlie or the last one!). When we noticed that all of these symptoms started to come together at 4.5 (after that round of 2 strep episodes and swine flu), I started researching early-onset OCD/tics because I felt that even with his genetic predisposition, it seemed too early at 4 and a half to be dealing with this. Learned very quickly from reading the Pandasnetwork website, Saving Sammy, and this forum what I was probably dealing with. I took him to his ped. that weekend, and sure enough, he had strep (titers are always low). I got to Dr. T in NJ quickly and found that he also had high mycoplasma numbers. Some other younger behaviors included: asking a million why questions (but my husband and I loved his curiosity and always answer... so even though there's probably a compulsive element to it, he's a very smart kid because I always answer the questions! I can deal with his temperment (in fact, I rather like having a funny, sensitive, slightly quirky kid... the things that make me the most sad are the wild, jerky movements and watching his eyes roll, and limbs move of their own accord... someone else said it well.. it's like a weird energy that somehow seems wrong. I use a lot of ERP with him... e.g. when he wants to count something, I'll say something like... "hey we can't waste our time with that...we need more time for fun, for a story, etc. I will then prevent him from counting something over... I'll make him step on cracks... but done in a humorous way. After having several exacerbations (by which I mean a return to jerky movements/tics, not stepping on cracks, and more sensitive than usual), then I've tested for strep (he usually has it, and we've treated with abx or only twice we tried steroids (one 5 day burst, one month long taper)... so clear that the steroids worked. He does better on azith. than augmentin... actually seems worse with augmentin. Here is is now... on 2 weeks of azith... started to get better... and I am almost positive I have strep right now (he's backsliding...). I'll be going to the doc tomorrow for a strep test... although I could just get called in an abx, I feel like I want to know as much about whether I actually have it or not... more diagnostic and teaching my doctors that I'm not crazy! Well, hope that helped... and I'd welcome any thoughts if others were in similar positions! Sometimes, it seems that despite all of the symptoms... e.g. bedwetting, deterioration of drawing skills (surprisingly, he can still write letters... but they are sloppier than his younger brother...the occasional jerky behavior, etc., it still seems to be too mild to go for IVIG or something stronger than abx and very occasional steroids (only if absolutely needed). He has friends, does great in Kindergarten, is loving at home... it just scares me that so many people seem to have similar histories... and then the big episode hit in grade school (e.g. school refusal, etc.)... I also wonder like many other parents about whether we should be hitting this harder while he's still young... as compared to waiting for something big to occur. My husband and I both work... I don't know how we would ever do home schooling if that were necessary. God bless to all the parents who do whatever it takes to get answers and solutions. Take care, Franie

Son was 4.5 when multiple ocd and tics started... raised the alarm... he was diagnosed within a week or so... Dr. T saw us on a Sunday! He started an antibiotic and 5 day steroid burst... worked great... then strep again... did the cycle again ... strep again ...and he also had high mycoplasma titers.... abx and month long steroid taper... that worked best... few months remission ...then strep again! I now realize he just can't be off azith. He's on 200 mg bid... but as he gets a little better we will try to go to a maintenance dose... not sure what that will be yet. Oh... and we're getting his tonsils out soon even though I know it's not curative ... but he's had strep 7 times this year. Last but certainly not least... although I caught the first BIG PANDAS episode quickly, I now realize he likely has had it for several years ... chalked up the other symptoms to his being a 2, 3, then 4 yr old who was smart, quirky, stubborn, sensitive, and neurotic . But hey, he comes from a long maternal line of high functioning yet neurotic individuals ... I only did the research after the cluster of symptoms hit hard following sequential bouts of strep, swine flu, then strep within a month and a half period. I now wonder if tx might have been more curative if caught earlier. Frannie

Thanks Eileen! See you hopefully at the next meeting in January!

When your kindergartner celebrates National Nut Day at school and his response to the starter phrase "It makes me nuts when..." is "when my mom makes me step on the cracks" complete with a picture of me pushing him over a series of lines. Yes, I push my son onto the sidewalk cracks that he tries to step over. A little exposure plus response prevention.... at least he laughs about that one. I've been reading the forum for a while and I'll send a longer introductory post but thanks for all of your dedication to trying to figure all of this out. Frannie (mom to Jack- 5 1/2)