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Just wanted to chime in here. It's been a while since I've posted. Zithromax was doing nothing for us, so I took the plunge after a year and took him off, and our family has' beenon Gaps now for 6 1/2 months. Improvements with our Pandas son started around 3 weeks in (he majorly detoxed on day 3 through 7 with fever and vomiting even chicken soup). Now it has gotten to the point where the rages have pretty much gone. If he does get angry, it does not escalate into abuse, just moodiness. Just began probiotics, and by the 2nd week on biokult I started to notice a definite increase in moodiness, frustration, sobbing about insignificant things, etc. These are the same type of behaviors, on a lesser level, but the same as when he was in Pandas mode. I am going to switch him to another probiotic (Gutpro? any ideas?) and am hoping he will normalize soon because my nerves can't stand it anymore. Once you have seen improvement, it makes the regressions so intolerable even if it's on a lesser level than before. This negative reaction kinds of seals the deals on his having Pandas for me (not that I didn't have other proofs before, but he has never had classic tics/ocd, so I always wondered if it was truly pandas). He has reacted in the past to sick family members (sometime a day or two before we knew someone was sick), and now a probiotic strain with strep...done deal. What happens when I introduce yogurt - that also has streptoccus thermophilius in it...anyone have feedback on that? Thanks and good luck to everyone with their healing.

Sounds like my son. Can't transition, stalls at bedtime, and rushing him just sets off a meltdown, throwing things down the stairs, shaking the banister (I hope it doesn't break!), etc. Even when we are having a good day, it can change rapidly out of nowhere, like a storm cloud that justs creeps up all of a sudden. For people not experiencing this, there's just no way they can even fathom the havoc it wreaks on your daily life and mood. Keep strong!

My son has pandas, and I think my duaghter may also be showing early signs. Her blood resluts were elevated ASO 320 (normal range was <150 for our lab) and low Dnase-B AB at <50 (ref range given for the lab was <187) The doctor we are seeing for my son's pandas said the aso was nomal and dnase low, so she did not think it pointed at pandas. (This convo was via e-mail, she has not yet met my daughter and I wanted the bloods done first to see if I should schedule a consult $$$$) However, I am questioning that - with the symptoms and high ASO (according to the ref. range), how significant is a low Dnase really? Your thoughts...thanks. Also, her eosinophils, absolute were elevated at 704 (range is 15-600) indicative of parasite infection or allergic reaction (she definitely has seasonal allergies in the spring, but that's all I know about). Any link here with the new behaviors (meltdowns, grumpiness, bossy/nasty to siblings).

That's why having this forum is such a relief - at least here people "get it". I have had very similar experiences. So often people tell me what a sweetheart my son is. HA! What a joke - he's a holy terror at home, tormenting his younger siblings, ekeing out whatever little strength we have left, always wanting more and going ballistic when we put our foot down. But the truth is, he does have a sweet side that we are seeing more of now on zithromax. However, you get the feeling that they (family especially) think you are exaggerating it. Well, like you said, they've never seen his rages. I told my mother the other day that these specialists (DAN, LLMD, etc) cost a lot of $ for consults, but if they can help, maybe I should try it. She listened politely but reminded me that I tend to be a hypocondriac and maybe it's not necessary to spend that much...but if it were her child and she was in the situation, what would the alternative be - let him deteriorate mentally and see where this disease takes him? Thanks for the vent - and to the forum for being our understanding soundboard.

Thank you all for your responses. Just knowing that others are in the same boat and somehow muddle through really helped me today. When ds came home from school I was able to be more patient and loving and the anxiety I was feeling watching him the past few days as these new symptoms appeared seemed to be able to be pushed aside to allow me to be able to interact more happily with him. Interestingly, he seemed pretty happy mood-wise, which is always a nice surprise - I would have thought the rages would spike if he was showing new symptoms (although since we had some of the germs in the house this past month his moods have fluctuated more negatively, but never back to the rages). Will keep you posted on what the doctor says.

I have no knowledge about alternative diets, but I would like to try it as complimentary to our antibiotic treatment. I know that anything white is not good...but I have no idea how to cook and cut out white sugar, etc. and it seems so daunting. Where should I start? A book - any recommendations? A consult with a nutritionist? I also don't know where to focus - eliminate sugar cooking? anti-imflammatory cooking? Any advice and pointers would be helpful. Thanks.

Thank you both for your empathy. It is really hard to watch, especially when I mentioned it to my husband and mother and they had a hard time noticing it at the outset - I kept saying, "just watch him". He is about 46 lbs and is on 250 mg zithro a day (a.m.). Takes 1 culturelle probiotic (p.m.) and 500 mg omega 3, and melatonin at times to help him fall asleep. The zithromax really helped cut out the rages, but his moodiness has still lingered and I feel like we are not going to see much more progres on it. My doctor was away, but I will speak to her tomorrow a.m. to see what the next steps are. Thanks!

I am so distraught - until now my son's main issues were the rages which have become much more manageable while on zithro for the past 6 months. Living with him is very challenging, but I felt lucky compared to a lot of people here whose kids seem much more debilitated. Just recently I noticed something new which I now see is an established tic. He does neck stretch and shoulder shrug now. It is heartbreaking for me to watch him. I also detect something different in his speech pattern. It seems like there is a little blip in his speech, almost like a momentary pause, and then he continues but backtracks one or two words. It sounds almost like a little stutter. Unless you are looking out for it you won't really notice it, but to me it's plain as day. I am so sad - why is this happening while on zithro. I do know he had a could earlier this month, and my daughter had an ear infection, but stil - he had not shown a real tic before (he had a persistent cough but that just seemed more normal than a head/shoulder thing.) I just feel so lost.

My son's ODD flared during the summer months. His eyes are usually dilated, even now while on zithro. His ODD was also the most severe part of his Pandas (so far). Anything would set him off - misplacing his watch (that happened at least once a day), not liking breakfast, having to carry his knapsack into the house from the car...Evenings before bedtime were always pretty bad.

Thanks for the insights. To clarify, it wasn't the usual hard spot at injection site. Her whole upper arm blew up, was hot, very hard, and my understanding was that it was infected. I am having a hard time getting my records form that office, as I am switching from that doc, but will persist. Re: the lyme, I'm also skeptical because I can't imagine when that would have happened, but you're right, it's possible. I plan to see an LLMD to test further co-infections. Do I have to present child by child (i.e. separate consult fees for each kid), or do they do testing on everyone if I want?

Just thinking...the daughter that I am strongly suspicious of showing signs of Pandas had a reaction after a vaccine about 6 months ago - I don't remember which vaccine it was for, but she was 5 1/2 and her arm got swollen, red and hard. I called the doc and he put her on amoxcil. Having trouble formulating the thought, but this is an autoimmune response, right? Makes sense that maybe she would be Pandas if this is how she reacts to the shot? (She also gets terrible eczema/allergies in the spring, had chest pain which was her only symptom when she had strep, leg pain, now she is having disposition changes.) Any thoughts on this?

Way before this whole thing began with my son, I was the one who always got strep - evry 3-4 months for about a year and a half. (Had strep prior times, but not as often/recurrent) Got amoxcil each time I cultured positive and was good for a few more months. Then an ENT told me I had allergies causing a post nasal drip, tonsils infecting, and gave me Levaquin for 10 days. After that, strep stopped but my next infection many months later was a sinus infection. I've since had some of those, maybe strep again (?) but not nearly as often anymore. Not sure what my bloods are, but would be curious to have them drawn.

I've been following your posts and know you have been through so much. This is great news. I really hope you see continued improvement towards health!

Thank you all for your responses. Thanks for the Dr. Horowitz reference - that is a good location for us and he sounds well informed. How is his bedside manner? Do I go to both a Dr. Horowitz (LLMD) and a Scott Smith (DAN) - I guess what I am confused about it, is what is the primary approach of each type of doctor and if they are different I guess go to both? Also, I have had on occassion gotten a stiff neck, but not sure this would be related to Lyme? To Eljomom - my son had his first major exacerbation a year and a half ago (at least that we noticed). He became more manageable after a few months, but a year after the first exacerbation it recurred, more intensely even. He began treatment on zithro, omega 3 supplements and probiotic and has been on it for 6 mo. We started at 200 mg per day (he weighs in the mid 40 lb range) and then increased it after 3 months to 250mg per day. We have seen the rages decrease but the improvements have been very gradual over time, and he is still moody. Sometimes he is moodier an other times happier but more hyper. He is in his moddy/down state again, but the rages are still pretty much gone.

I am working with a Pandas aware Ped in NY, who is a godsend. My son is doing much better on azith, but not 100% after 6 months still. I want to do further testing for co-infections and not sure how to proceed. Some of you recommended DAN doc Scott Smith, PA, who sounds great from what I hear. Will a DAN doc who is Pandas aware do they same thing as an LLMD? Do I need to consult with both types? If so, who would be a good LLMD in the NY metro area? Thanks so much!

Before we knew about Pandas, my son had a cough (later realized it was a tic) and some behavior issues. He was put on med. for the cough - the doc had listened to his lungs many times and kept saying nothing was wrong, and finally put him on something - I am thinking now it may have been a steroid. Anyway, all I can remember is that it was probably around then that his behaviors really deteriorated and his rages and tantrums escalated to the "this is not normal" level. I wonder if the steroid had anything to do with it?

I am so glad you started this thread. My ds8 began having outrageous rages and ODD symptoms when he was 6 1/2, a non-productive constant cough that would not seem to go away. (He had a + throat culture 6 months prior, but I hadn't connected it yet). We seemed to get past it after about 3 months, but it started up again with greater intensity a year later in the summer when he was 7 1/2. So I scoured these boards and put together the diagnosis mostly by myself. Found a wonderful doctor who agreed and sure enough his titers were elevated. He's been on zithro for 6 months and although he is still quite moody at times, his rages have pretty much disappeared. He also has some tics still if you want to call them that - sybtle neck stretch, nose clearing, and at times the cough. Now, we are concerned that our dd6 may be showing symptoms. Hers are different though. She will tell em at random time that her legs ache, her chest hurts, she will have a meltdown crying (probably due to anxiety of something - like she was not ready to turn out the lights for bed and the next thing you know she's sobbing). She is also a little brattier. This may not sound much to a doctor, but this kid used to be "the perfect child". She has such a good nature, sweet, happy, and now she is moodier as well. But I am embarrased to tell the doctor because then they will look at me like I am crazy, especially since my kids are not presenting with the "classic" OCD and tics. Certainly my ped thinks I am crazy - I asked her to add the strep titers to the routine bloodwork they were ordering, and she refused (via her sec'y) saying she's not involved with our specialist and doesn't know the case, so we should have it done through the spec. I mean, really, why have the kid have blood drawn twice, and what's it going to hurt her to just see what the titers are? I don't know how much to trust my instincts that she also has Pandas. Maybe I'm just a stressed out mother and crazy like everyone thinks. I am also scared for my kids, their future, and selfishly for myself and the struggle it is every day. I have 5 kids and afraid I see a little of Pandas everywhere I look. Thanks for the vent!

I have two DAN doctors, one is in Edison, NJ (not far from NYC, I suppose). He has two pandas sons and is very well-versed and knowledgable in pandas. He has also helped my youngest tremendously with "spectrum" issues outside of pandas. He is not on the DAN list, but one of the best. contact info: Scott Smith www.drneubrander.com (he has not yet been added to the website, but you can use the phone number listed. he used to be with rossignol and bradstreet in florida) Thanks - he seems to have a great reputation by what I've seen on my web search. Are DAN doctors covered by insurance, or is this all out of pocket, and what can I expect to pay for a consult/visits? Thanks again!

Excuse my ignorance - need some advice on the natural stuff as I wish I knew more about it. Do you use a DAN doctor in place of a regular pediatrician, or as a specialist? Also, I looked at the DAN list, Malke. Thanks for sharing the link. Has anyone here used any of the DAN docs in NYC/Queens/Long Island/Brooklyn area? I would like a recommendation from someone who has Pandas and used them. Not sure how to pick one from the other. I would like comprehensive testing to rule out other issues (other infections, vit. deficiency, etc.) Also want to see what can be done holistically for our entire family to boost our immunity, make us healthier, etc and prevent the other kids from getting this (I'm nervous about 2 of them already). Also, I spoke to a chiropractor in my area who I've used for my own neck pain, thinking chiropractic may benefit my Pandas 8 yr old son. He was not familiar with Pandas but I explained the basic theory and basal ganglia connection... he would do nutition/supplement recommendation as well as chiropractic adjustment (and cranial). Should it make a difference if he does not have prior Pandas knowledge? Thanks!

Thanks for the welcome! There is so much to say but I'm not sure where to begin, so please excuse my ramblings! Last summer when my son was 6 1/2, he became very defiant, had terrible rages directed at us over seemingly insignificant things, and we knew that something was really off. Concurrently, I noticed he had a persistent cough that would not go away despite multiple trips to the doctor who insisted his lungs were clear. Only later did I realize that the cough was probably like a tic, and that was one of the clues I used in putting this Pandas diagnosis together. My ped finally agreed to get the ASO titer tested (I guess he did not know about dnase, which he had tested later and was elevated at 435). Even when he cam out mildly elevated at 285 (normal range was under 150 for the lab we used), my doc pooh-poohed the Pandas theory and said that it is characterized by tics and OCD, none of which my son had (he never even connected the habit cough...) He said we could try putting him on zithro for a month and see if it helps. At that point I left that ped (he had been my ped growing up too) as he was so patronizing to me and I was so upset at him for not taking this seriously (my whole life was in a shambles over this, every evening was a battle getting this kid to sleep, and the doc made me feel like I was the neurotic mother with the mental illness). We went to another ped near our area who specializes in Pandas and she has been so compassionate and wonderful. She agreed with me and said she wanted to treat it as a Pandas case even though he did not have the tics/ocd. So many of the other symptoms my son has were also part of it - such as the shirt chewing, getting to sleep issues, ODD, etc. He was on zithro 200 mg but we raised that to 250 and have seen definite, but SLOW progress. His all-out rages are infrequent and we do not need to restrain him from throwing chairs around, tipping over the kitchen garbage, etc. We are still dealing with his moodiness and immaturity, and occasional melt downs/crying/wailing (probably anxiety drvien). Interesting things I have not seen mentioned but will throw out there.. his pupils are dilated most of the time (as are many with Pandas) and he just got glasses...I read online that dilated pupils can let in too much light and damage the eye - wondering if anyone else's pandas kids needed glasses early because of the dilation factor? Although both my dh and I have had glasses at an early age, so maybe it's all genetics... Before things really got out of hand, I started noticing that there were always holes in his socks - he would get them caught in the screw of the folding chairs at the table...I couldn't figure out why his were the only socks that got holes. Now I'm confidently wondering if that falls into the chewing shirt category or something - also pandas related. Other things describing him: someone here posted about issues modulating voice - my son is really LOUD except when he retells a story at the table...I have such a hard time hearing him. Also, he doesn't know when to stop talking...retelling a story he heard in school can take up the entire meal, and no one else gets a chance to speak if we don't cut him off! He irritates his siblings, has always needed a lot of attention, even at a young age, late nighttime training at age 6, super smart, very charming outside of the home but inside it's a different story - that is why my original ped. (and others I've spoken with) all want to say it's not Pandas. That is why the forum has been so helpful...seeing your similar experiences made me know deep down that this might be it. Now we are also worried about our dd6 - she was the happiest child, sweetest kid, our "perfect child" and now she is becoming more defiant, having meltdows, etc. ever since her sore throat (neg. culture) a month ago. I am going to have her tested soon. I have a history of strep infections (maybe I have Pandas too but that is for a new post - this is getting way too long) approx every 3-4 months over a year and a half beginnig 4 years ago. Now I just get sinus infections but nothing for a while... My son had a strep infection about 6 months before his behaviors went ballistic, and my dd6 (and dd4) have a more extensive strep history (still + after a round of amox.), etc. Enough for now. Thanks...this was cathartic!

Hi. I am new here, but have been lurking for the past few months. Just wanted to say a big THANK YOU to everyone here on the board for sharing their stories and experiences. It has given me a lot of support as we begin the journey with our Pandas son age 8. I will post more of our story later, but for now, I just want to say I really owe a large part of my son's diagnosis to you guys! He did not present with the "typical" overt OCD and tics that the textbooks described, so my ped. scoffed at my suggestion that this might be pandas (even after moderately elevated ASO titer to go with the behavior change). After reading the forum posts I saw that the RAGES were definitely part of this disease and it gave me the confidence to pursue another opinion (even though I am generally timid to be assertive to professionals). (He is currently on Zithro for 5 months and his rages have improved a lot, but he still exhibits the moodiness and other difficult behaviors so we are hoping the zithro wil continue to work that out over the next while...) Thanks! Ange