Stephanie2

I didn't read all the replies, but I wanted to let you know that my 2 boys have pandas and they also each have issues along the spectrum (neither officially diagnosed, didn't even get my 2 year old evaluated). Both of my boys are with a DAN doctor (started out with Andrew Levinson and then switched to Scott Smith with is with Bradstreet b/c Levinson was not managing pandas very well). My 5 year old responded to biomed, but not in the area of behavior b/c his pandas went misdiagnosed for so long. I am hoping that we are on the right track now. Just had his first IVIG done 3 weeks ago, no big wows yet. My 2 year old was diagnosed at the age of 18 months with pandas. He has been a big responder to biomed in terms of socially and with increase in language/communication. However, we still don't have a lot of speech and we are just starting to treat his pandas. We just did his first steroid burst and he improved remarkably, but then pandas came back with a vengeance. I guess our next step with him is IVIG, but he may be too young for that. Did I see that someone mentioned Chiari Malformation? My 2 year old has Chiari Malformation as well. He has had some rough days here and there with pain in the back of his head and having trouble swallowing and walking, but for the most part, 95% of his days are symptom-free, as far as I can tell. You never know what impact the chiari is having on sensory, behavior, speech, autism signs, etc. I will send you a PM, seems like we have a lot in common :-)

My 2 year old is at times sensitive to bright light (since he came out of the womb). He puts his arm over his eyes when it happens. I have not made a connection to his pandas exacerbations, though. Also, he has Chiari Malformation and sensitivity to light is one of the symptoms. I have never seen the droopy eyelids, though. Best of luck, Stephanie

Each time my son gets a positive throat culture for strep, it has been preceded by a day or two of vomitting (usually 1-2 weeks before). He has had 3 positive cultures in his life and it happened all three times! Stephanie

Thank you for all of your replies! My sons ped said that most kids this age (2) get impetigo from strep, however, my 5 year old got a positive throat culture for staph during this time. So we are assuming it is staph (but with my luck it is both strep and staph!). Either way, I assume it can exacerbate both kid's pandas. We started with Mupirocin cream, then we were switched to Altabax b/c it has less resistance. We are just finishing up the 3rd antibiotic and the impetigo seems clear for now. I am definitely going to do some laundry (hot) tonight and disinfect the house so that he does not become reinfected. I have not been able to bring myself to do the bleach baths, as he has very bad eczema at times. But I am using a medicinal soap that has an antibiotic in it. By the way, my 5 year old just received a stool analysis that showed 1+ for staph aureus. The lab indicates that this is "non-pathogenic", does anyone know if this would pose as a problem? Do we all have staph in our guts??? He also had klebsiella, but that's another post. We are the "house of microbes"!!!!! Stephanie

My son is about 50 lbs and I give him 1 Reishi capsule twice a day. He really could use it 3 times a day but I don't want to overdose, if that's possible. It needs to be a good standardized extract. The one I found is called Reishi Max by Pharmanex. It is also supposed to be immune-modulatory, anti-inflammatory and has direct action against strep and staph. A lot of ppl use it for autoimmune conditions. Also supposed to be helpful for regulating bowel movements which it seems to have done in both of my boys (one had constipation, other had diarrhea). ReishiMax Pharmanex 500 mg per capsule standardized to 6% triterpenes and 13.5% polysaccharides 1% cracked spores (whatever that means!) Our DAN also recommended Quercetin, but I haven't started that one yet either... Stephanie

Never heard of hist neutraization, but maybe that's just a fancy term for using an allergy med? Our DAN recommended using claritin (H1 blocker) and pepcid AC (H2 blocker), which I have not yet started. Also, Reishi mushroom (if you are looking for something natural) tends to act as an antihistimine in my 5 year old. It really helps control his urticaria (chronic hives). Not so sure what it is doing for his pandas, but I did notice an improvement in symptoms when i first started it. Stephanie

I have heard that some strains of strep are more problematic than others (Buster could go into more detail on this if I am right). You bring up an interesting scenario, though. I really do believe that both of my neices (my brother's daughters, my brother had kawasaki as a child) had pandas at one point with unexplained sensory and separation anxiety, etc... Then when my neice got strep throat (they caught it very early) I was surprised that there were no pandas symptoms. Maybe they caught it early enough or maybe I was wrong that she ever had pandas. As for my kids, my 5 year old always seems to get pandas symptoms before the sore throat (couple days), and my 2 year old sometimes just gets pandas symptoms with no signs of illness. Stephanie

Maybe I should break this up into two posts, but I don't want to "hog" the forum. Two questions: Both kids have pandas (ages 5 and 2). My 2 year old has been battling impetigo for about 5 months now. He is on his 3rd antibiotic(Septra) and also a steroid burst. The first 2 antibiotics, while they helped the pandas symptoms tremendously, did not altogether get rid of the impetigo (Keflex and augmentin). So my question is, what do you all think is causing the impetigo, strep or staph? I should add here that my 5 year old cultured positive for staph in his THROAT during this time, and also I developed an absess in my finger that cleared up with a round of antibiotics. We have been assuming this whole time that the impetigo is staph due to my 5 year olds' culture, but then the pediatrician said that MOST impetigo in children this young is due to strep. Also, how likely is it that the impetigo is causing my 5 year old to exacerbate with pandas symptoms, regardless of what microbe we are dealing with? Also, I just started my 2 year old on his first steroid burst (hard to differentiate pandas vs. being 2, so I have been waiting for a DEFINITE pandas exacerbation and I think today I got one - like out of exorcist movie). The thing I did not expect is to see results within 12 hours of his first dose! I mean, he is still a little crabby and may still have a tic, but he started speaking a bunch of words (he is speech delayed) and he started giving me tons of affection today. Also, his impetigo looked SO MUCH better and his eczema looked much better. All within 12 hours. Is that possible? Unlike in my 5 year old, I have not quite gotten his tell-tale pandas symptoms defined. Being non-verbal it is hard to pick up on OCD. The one thing that stands out sometimes is his eye tics. But when those are absent, I don't really know what I am looking for!! I do know that today he had a very crazed look in his eyes while he went nuts and he didn't know what he wanted. He kept pointing to things and screaming his head off. He was so lost and confused and crazed! I finally gave him ibuprofen and within 20 minutes he was very calm...so I started the steroid that I have had in my fridge for just such an episode. Stephanie

Mom MD, did you go into it planning to do 2 treatments 8 weeks apart or did you decide to do the 2nd tx when the first didn't bring about the results you were looking for? Why 8 weeks instead of 3 months like Dr. K recommends? I'm just wondering what Dr. Latimer's/your thinking is on this. We just did 1 mg/kg for my 5 year old and I'm not sure what to do from here. Considering waiting 2.5 to 3 months and then doing 1.5/kg if needed. Thanks, Stephanie

She sounds a lot like my son with the pointing and grunting, hitting, screaming, velcro syndrome. You are probably right that there is more than we know about the effects of pandas. I started him on a steroid today for the first time and WOW he came out with SO MANY words and AFFECTION, which is rare for him!!! He was stroking my arm and my hair while I rocked him tonight!! So darn sweet! I really think there is a lot of inflammation in his poor little brain! Stephanie

Johnsmom, We are doing the DAN protocol. We started the GFCFSF diet during an exacerbation (didn't know he had pandas at the time) and there was a definite difference when I removed gluten completely. There was a calming effect. I have to assume that the diet did have an antiinflammatory effect, and I have heard that it does. Additionally, my son tested IgG sensitive to gluten and soy, so by removing these there should be an antiinflammatory effect. By the way, I have been lax about their diet lately (husband out of town for extended time) and sure enough I have noticed non-stop pandas symptoms. I do think that he diet may play a role in the inflammatory side of things. We are doing tons of supplements that are antiinflammatory, but my 5 year old (and my 2 year old) just seem to be getting progressively worse in terms of pandas/inflammation. I don't know if that means that the supps are not working or if they are just progressively becoming more reactive to more antibodies and their pandas disease-state is just getting worse because it has gone uncontrolled for so long. My 5 year old definitley needs some bombs dropped on his pandas (just did our first IVIG 2 weeks ago, not sure if we did high enough dose, though), and my 2 year old as of today had one of the worst sudden-onset pandas I have ever seen with him so I started his steroid burst that I had on the back-burner. Interestingly, my 2 year old is what I consider to be a "recovered" early-onset autistic child (early onset of symtoms and very early DAN intervention with GREAT success) but still has a significant speech delay. Today I gave him the steroid this morning and by this evening at dinner he was spouting off words left and right! I could have cried! I know it may be temporary for now, but I now see how the inflammation is so much a part of his speech problem. Guess I need to suck it up and clean up their diet when daddy gets home. So hard not to put them in the car and head for mcdonalds (cringe). Anyway, we should keep in touch as the kids doing the DAN protocol have such a unique experience treating pandas it seems, at least my kids do. Such a hard time tolerating antibiotics, steroids etc... Stephanie

Momto2pandas and SFmom, are you saying that your younger children's speech delay is due to pandas????!!!! And how do you know that? You really caught my attention b/c my 2 year old has pandas and quite a speech delay (barely any words at all, and the words he has are incomprehensible to most people). I am doing all I can for the little guy, stopped vaccines, working our way through the DAN protocol, weekly speech therapy, constantly talking to him, etc but the speech just won't come. I never considered that maybe pandas could be affecting his speech. Just wondering... Stephanie

Singulair made my kid a little nuts, but Zyrtec put him over the edge!! When I took him off both one day, his behavior improved dramatically overnight! Watch out for both of those drugs! Also, the pediatrician said that zyrtec made her want to divorce her husband - she was on it for 3 years before she realized what it was doing to her!!! Stephanie

Ditto on the titer not being definitive. My 5 year old is a textbook case but does not have titer elevations even after a positive rapid culture. Also, I am sorry if this sounds niave, but maybe you could round up enough adults to just hold her down? It took 4 adults to hold down my 5 year old to insert the IV. Maybe you need 6 or 8 adults, but it would be worth it if that's what it takes. Where are you having this done? I am sure your daughter will not be the only wild child, ya know? Our doc said that they do this with 6 foot male teenagers. They just do what it takes to get it done even if the office gets torn apart in the meantime. That is their job in my opinion. Let us know how it goes! Good luck! Stephanie

My son's stool analysis just showed Klebsiella bacteria in his gut which was making him extremely aggressive and bad OCD. We gave him vancomycin and he is much better now. Just FYI. So much more out there than strep. And our doctor explained that strep is always the initial infection, but once pandas is activated, anything can bring up pandas symptoms in the future - viruses, bacteria, etc. He doesn't even make us go for a strep culture anymore b/c there is no way to know what any particular exacerbation is from. He just increases the antibiotic if I even suspect bacteria. (which is great, but in our case the high dose abx causes klebsiella, so then we add vanco, then we add diflucan, then we have to increase probiotics - it's a vicious cycle that we are hoping to escape with IVIG). Stephanie

I'm just curious b/c back in Oct./Nov. she and Dr. K were all the rage and then now all I hear about is Dr. K and Dr. T and Dr. B. Is it that Dr. Latimer became inaccessible (as in our experience) or is it that all those people are cured so they are no longer on the forum? I know she does a lot of PEX, is that the way to go? Stephanie

Let me guess, your principal is probably between the ages of 55-65? The older generation just doesn't buy into this stuff b/c they have been so "indoctrinated" to believe that if you have bipolar...then you have bipolar and you need a mood stabilizing med. And if you have depression, then you need an antidepressant b/c you have a "chemical imbalance". Not to mention the older generation thinks that if your kid is unruly then u are just an awful parent. And then there is the issue of increased vaccines and the increase in special needs diagnoses (don't mean to start a big controversy, just my opinion b/c I watched both kids regress after vaccines). They have not experienced this level of special needs before and they think that we, the parents, are just a generation of screw-ups who don't know how to parent. I could be wrong about your principal's age and I could be overgeneralizing about the older generation and their beliefs, but your post struck a sore spot for me b/c this is my own mom's attitude which has caused a major divide in our relationship and I can't even leave my kids with her b/c she calls my son an idiot when he rolls around the floor having tics. She REFUSES to accept ANY of his diagnoses. And if IVIG cures him, she will just say that he grew out of it. Oh, and my younger son acts like his older brother b/c he is learning bad behavior, NOT because he also has PANDAS (sarcasm, here)! How can it be possible that they BOTH have PANDAS???!!! And it doesn't matter that they were each diagnosed by a different doctor, each of which did not know that the other sib had PANDAS! What are the odds that that would happen and that both docs are wrong about both kids??? But that doesnt' matter to my mom. UGH! OK, a little off-topic. Just sent me off on a tangent... Anyway, I guarantee that HUGE numbers of PANDAS/PITAND exist. It won't be until the Cunningham test becomes mainstream that we will possibly be able to know just how big it is (so many ppl get the strep titer test and then dismiss it when they come back low/negative, like my son's). And then someone like Dr. K needs to step up and educate HUGE numbers of docs around the country or most people will be spinning their wheels trying to diagnose/treat it. There is a huge lack of a "standard of care" when it comes to pandas. Stephanie

Also my son was given the dx Cognitive Disorder - Not Otherwise Specified. And to comment on Alex's comment about Dr. K saying that all OCD is pandas/pitand initiated. This may be true because in my son's case he recently developed a worsening of OCD when he developed a klebsiella infection due to the continued use of antibiotics (2 steps forward, one step back). So now he has to take vancomycin in addition to zithromax. So, even when his PANDAS is under control, if he has bacteria in the gut he still has OCD (actually much worse than any pandas episode). Would be interesting to run labs on all OCD patients to see what other infections may be there even if no strep/pandas. Stephanie I totally agree. I started pulling stats for Autism, Bipolar, etc. I think the travesty here is how many kids end up on very significant psych meds which mask symptoms but don't address cause. I was very happy to see in the DSM-V that "tics due to a general medical condition" and "anxiety disorder due to a general medical condition" are both there. I was trying to figure out which medical condition would likely be used for coding. Seemed any of these are likely: 279.0 -- Deficiency of humoral immunity or 279.03 -- Congenital hypogammaglobulinemia or 279.10 -- Immunodeficiency with predominant t-cell defect unspecified or 279.4 -- Autoimmune disease not elsewhere classified or 323.4 -- Other encephalitis due to infection classified elsewhere or 323.62 -- Other postinfectious encephalitis and encephalomyelitis and then finish with either: 041.00 -- Streptococcus infection in conditions classified elsewhere and of unspecified site streptococcus unspecified I also agree the the direct cause should be investigated before just treating symptoms. Sort of before prescribing pain meds for "chest hurts" perhaps look for the sword sticking out or the signs of a heart attack -- likely treated differently Buster

Be careful with Singulair. It has a black box warning for the way it affects kid's behavior/depression, etc...Just observe for any changes, and the changes may not happen right away. Just watch... My son took singulair for a couple years. It is hard to say just how impacted he was by it b/c he was in and out of pandas episodes during that time. But I will say this...he had night terrors and leg cramps among other issues that I cant' remember right now. they went away the instant I stopped singulair. also noticed an improvement in behavior when i stopped it. I have to tell you that my son no longer needs those allergy/asthma meds now that I took dairy out of his diet and added some basic supplements to boost his immune system. Dairy products cause congestion in many people. After I saw the improvement, I stopped eating dairy as well and now I am off all my meds, too! Stephanie

I just had this conversation with my son's DAN doctor. He said that PANDAS/autism gets worse in allergy season, even for the kids who do not test positive for specific allergies. He said there was a study done along these lines...have no idea which study he was referring to. Stephanie

peglem brings up an excellent point. my ds5 was dx'd with SPD and anxiety and depression. the psych totally missed the tics and OCD symptoms. Not to mention, my ds2 was just confirmed to have PANDAS and we have not him evaluated for other diagnoses and we probably never will. So there are 2 kids right there that are not counted. I also think that my neices have had pandas episodes...possibly 2 more...

I find myself snapping at my ds5 all the time when he is in exacerbation. Sometimes I think that what is REALLY bothering me is just how sad it is to watch him act so strange and just how scary it is that maybe he will never really be able to function in society. I think that when I snap at him about his compulsions/tics I am really snapping about the big picture. I mean, it does drive you insane to have these children not be able to get through ANY normal activity without creating dysfunction for the rest of the family. Personally, I never knew life could get this crazy, as now I have both of my boys going through exacerbations together, my husband is out of town for 5 months, etc. Just the other day my 5 yo literally beat up my 2 yo in the back seat while I was driving on a major highway!! Never could have imagined that from my sweet boy. My husband and I just tell each other that things HAVE to get better one day. Try not to beat yourself up from the guilt. She is not the only one suffering, you as her mother are bearing the brunt of this insanity and you can't possibly go untouched! Stephanie

I haven't asked Scott b/c I'm not quite there yet in being ready to do it. I think that he would be willing to do it, especially if his immunology labs come back low. But I have heard that Dr. K would not treat a child that young and I am wondering what other docs out there are saying about the real young ones. Scott did my 5 year old's IVIG a couple weeks ago. By the way, if I did not already mention it, you may want to push for higher dose IVIG with Scott. He normally does 1 g/kg, but I know he recently agreed to do 2 g/kg for a 14 yo girl and I will be asking for 1.5 if we have to do it again. Please PM me and let me know how it goes with your appt and what the outcome is as time goes on! Stephanie I agree and not to mention he is quite speech delayed (he has had 3 words since he was 10 months old and he still only has 3 words, if that). He also had early signs of autism at one point. He no longer has the autism signs, but sometimes I wonder what all this pandas and antibiotics can do to him in the long run. Anyway, thanks for the suggestion about the steroid burst. I have been sitting here thinking about emailing his DAN doctor about that very thing. I know he would be willing to do it, I just worry what all these meds will do to his immune system while he is trying to fight impetigo, ya know? Stephanie

I agree and not to mention he is quite speech delayed (he has had 3 words since he was 10 months old and he still only has 3 words, if that). He also had early signs of autism at one point. He no longer has the autism signs, but sometimes I wonder what all this pandas and antibiotics can do to him in the long run. Anyway, thanks for the suggestion about the steroid burst. I have been sitting here thinking about emailing his DAN doctor about that very thing. I know he would be willing to do it, I just worry what all these meds will do to his immune system while he is trying to fight impetigo, ya know? Stephanie

My allergist does not do rapid throat cultures in his office for this very reason. He told me that rapid cultures CAN be false positive. I did not believe him as I thought he was trying to be devil's advocate about whether or not my son really had pandas. Anyway, I did a google search and I did read that 5% of the time strep can be false positive on a rapid. I don't remember the reason and I don't remember the site(s) where I read this. FWIW, Stephanie