reactive

Like airial95, I also carry the HLAb27 gene. I do not have AS, instead I have another form of spondylarthropathy called reactive arthritis. The difference with my type of arthritis is that it is infection triggered... which kind of stinks given my chronic tonsillitis. The other thing I will mention is that some autoimmune types of arthritis can lead to other organ damage..another reason to monitor with a rheumotologist. Reactive arthritis can cause aortic insufficiency..and AS can cause heart damage too.

Also, BTW MMC- our PANDAS son was sick and having a PANDAS flare...thought for sure he had strep- rapid negative but 2 days later culture + for H flu as you mentioned...not sure but may have caused the flare? This was a few years ago. H flu is common in the tonsils but in this case caused a tonsillitis in our PANDAS son and his fever abated once on antibiotics.

I have mentioned this before, but I firmly believe in T&A in most cases. Probably would have saved me the reactive arthritis I came down with at age 22. And I now have chronic cryptic tonsillitis. I really sucks. And the older you are, the harder it is. I really wish mine had been taken out as a child; I am now 45 and the risk is greater. Anyone questioning T&A needs to read the blog "tonsillitis understood" by a wonderful retired doctor named Itzhak Brook. He is awesome. It explains why strep can be recurrent...the tonsillar crypts and what not, and the other bugs that can live in those crypts that can render the antibiotics ineffective in killing the strep in the tonsils. And all this is regardless of PANDAS, although my son is PANDAS. Both my boys have had T&A. IMHO if you have PANDAS and strep, they better be taken out. Why take antibiotics everyday with those things still in there !!

Hmm...interesting. Our DS 12 PANDAS/PANS has complained over the years of an eye roll and darting eye tic. He has had reading comprehension issues and failed his 3rd grade state reading assessment even though he had A's and B's in reading in school that year. This past year- part of 5th grade and 6th grade this year we began having him use audio books for his reading when required to read novels. He is currently reading the Artemis Fowl series, and needs to read so many books per grading period and then test on them to get points...it is part of his reading grade. His comprehension went from getting 6 or 7 points out of 10 to 9 or 10 points out of 10. This is huge because it takes awhile to get through a novel with all the other things he has to do. So...I guess for us that is working...our DS says this seems strictly a tic for him, no other vision symptoms...he wears contact lenses for myopia. He says the tic would cause him to lose his place...plus I think his comprehension is better with audio regardless of tic issues too.

My kids have not been tested for HLA B27...never thought of it as related to PANDAS?

I would like to add that my DS 12 PANDAS had his worst flare at age 4, in March...and most years since then he seems worse in March...it is like a theme with him.

I have the HLA B27 antigen also...related to the reactive arthritis I have. DS 12 with PANS/PANDAS

sorry i keep double posting

I'm late on this one...but I have strong opinions on tonsils. Mainly because I wish I had mine out as a kid. I am now 45 and am living with the aftereffects of NOT having them out...including an autoimmune reactive arthritis I developed in my midtwenties and now a chronic crytpic tonsillitis that comes and goes. One ENT said to take them out even at my age, and another said I was too old and too much of a risk. My advice, if anyone is EVER in the fence about getting them out...just do it now. The older you are, the harder it is...

I'm late on this one...but I have strong opinions on tonsils. Mainly because I wish I had mine out as a kid. I am now 45 and am living with the aftereffects of NOT having them out...including an autoimmune reactive arthritis I developed in my midtwenties and now a chronic crytpic tonsillitis that comes and goes. One ENT said to take them out even at my age, and another said I was too old and too much of a risk. My advice, if anyone is EVER in the fence about getting them out...just do it now. The older you are, the harder it is...

I would also like to add...keep an eye on her stomach aches and headaches. My DS 12 is PANDAS...my DS8 is not, but the 8 year old would get strep quite a bit, and even when he did not have strep he would have intermittent headaches and stomach aches...when his tonsils were removed, those headaches and stomach aches went away Read tonsillitis understood, a blog by Dr. Brook.

Thanks to both of your replies. I do know that our DS 12 is PANDAS/PANS, there is no question...he was started on prophylactic antibiotics. But we do have a family history of OCD, tics, possible autism, ADHD, anxiety and panic disorder in several family members that do not fit PANDAS/PANS criteria. So it can muddy the waters a little for our PANDAS/PANS son and how to treat him. He reacted horribly to steroid exposure...it should have lessened his symptoms per PANDAS treatment guidelines- but it made him worse. So, I do think it is possible to have a tic disorder like Tourrette's and still have PANDAS. If 1 in 100 kids have a tic disorder anyway, there are bound to be some PANDAS kids who have one, like mine. But it is hard for us to know how to treat...steroids made him worse...but clonodine for tics made his tics worse too. Not only that, but it can be stressful to figure out a correct diagnosis when so many cases of this seem to be so different but yet the same There are times I read of some families having Lyme disease and I wonder if we could have that...esp since our PANDAS DS has enlarged spleen of unknown cause X 10 months now....but we also have a bad strep history. Like I said, can be hard to figure out. I think the physician we have just seen and began the prophylactic antibiotics is a good place to start...we are not and have not been in a position to travel to one of the leading PANDAS physicians. We have just this past week started zithromax 250mg x 3 days then twice weekly for the long term. This physician treats with steroids if a PANDAS flare shows no sign of improvement after one week and if that does not work she does order IVIG for patients. Our son is not that severe...but we want him to do better and feel better...one year ago hallucinations began occuring with PANDAS flares, where he had not had those since he was 4.

Hi all. I think it has been about 2 years since I have posted on here. Busy living life, happy to say. Our PANS DS 12 has done very well since his initial PANDAS flare at age 4. We are lucky, I think...but sometimes it can get rough. But nothing like some of you deal with day to day. We have dealt with PANS for 8 years now, and just saw a doctor 2 days ago and was finally given zithromax 250mg twice weekly. We'll see. Still have more questions than answers, I think. This is what I have figured out for OUR (stress on OUR) situation in the last 2 years. When DS was first labelled PANDAS, I figured strep was the cause...he got it all the time, and when baby brother got older he would get it too. And since I have been prone to strep, I would get it. A few years ago I was sick with a fever for 4 days, woke up the 5th day with a rash from neck down. Followed by knee swelling (reactive arthritis flare). The following week, after I am on prednisone for said knees, my 2 boys got strep. Next thing you know, my ASO is high...ooops must have had scarlet fever. BUT...I have learned in watching my DS 12 that some viruses, not all, and some allergens trigger flares for him. I have also now learned that I have chronic cryptic tonsillitis...and have learned that even though strep can linger in the crypts, so can h-flu and other bacteria. Lovely. In addition, I have come to realize, after feeling like a highly trained neurologist, that DS 12 with PANS has a tic disorder separate from the PANS. And this tic disorder is from my side of the family. Just one year ago, after dealing for 7-8 years of PANDAS, saw my own mother have motor tics. Looking back, she did a lot of sniffing when I was a teen which annoyed me greatly. I have another DS 8 who is very much ADHD and has had transient tics...but is NOT PANS. The icing on the cake was over a year ago seeing my out of state cousin who is mentally delayed, and noticing she has a definite tic disorder. She also looks like she has some autistic traits but is not autistic- very social- but has OCD and is savant like with numbers. It took 7 years of PANDAS to remember this cousin and link her to our situation. Genetics is an amazing thing...but not always in a good way Recently our DS12 PANS was diagnosed with a mildly enlarged spleen- found by ultrasound after an acute episode of belly pain. He has had ultrasound in April, July, October...same result no larger or no smaller...but CBC and metabolic panel normal and negative EBV and CMV titers. We need to see the hematologist again later this month for next ultrasound and visit. Our new doctor we saw this week gave us an order for more labs...CBC with smear, metabolic panel, vit D level, zinc level, thyroid function, ASO, antidnase B, ANA and sed rate. She also ordered a echocardiogram to check heart since my description of early symptoms overlap with sydenhams chorea and now the enlarged spleen. This doctor also thought we could try a very low dose of clonidine in the am to help with tics. Since she just gave us these meds, his first dose of zithromax was last night which he will take daily for 3 days then twice weekly, and the first dose of clonidine was this AM. He was very tired from the clonidine and his tics have worsened considerably. I really wish I would have started them separately because now I do not know which med increased the tics (even tho clonidine is supposed to reduce tics) Anyhow...I am so TIRED...I do not know how you parents with more severe kids do it...I is very tiring trying to figure out what to do!!

Hello to everyone as I have not posted in quite some time. We have had a long winter here; and we are glad to have summer here. In response to Sheila and all others, whether it is Beth Maloney or someone else with a story to tell...I have to say that thanks to this forum I have learned so much. I have learned from the forum directly; and in addition the forum has lead me to others from which I have learned quite a bit. As it stands now, I am trying to sort out everything and come to some conclusion as to the best way to help my son. I do not ever have enough time in the day to case manage our son let alone get to this forum as often as I would like. However, one comment I should make is this: since the diagnosis of PANDAS is still uncertain, and there is no recognized ICD 9 code for it, it will remain controversial. Until the medical community catches up to all us parents, controversy will reign. I am torn by which is right: let the medical field sort it out vs. let the likes of Beth Maloney and others steer us in certain directions. In the last several months I have struggled with so many decisions: steroids yes or no? antibiotics yes or no? allergy shots yes or no? a trip to Chicago? probably only if I would do IVIG which then leads to IVIG yes or no? Not knowing what to do has lead me to do nothing more than watch and wait while I study and go to a bunch of appointments. We are not in crisis mode at the moment, but have had many times in the past (remote and recent) in which we were. Someday in the near future I want to write you all with what I have been learning about my son. I hope that can be soon. But I am concerned about news stories and shows and what advice is being given. I have more research to do as I have not yet read any feedback from the autism one conference. But it is my very PERSONAL opinion that we do not have all the information yet, and any attempts for any one person to say "this is how we treat" is premature.

The only advice I have would be to switch to suspension or chewables.

Hi there This does not pertain to PANDAS per se, but I have spoken with a neurologist who taught me something. Evidently, some kids with TS can exhibit some symptoms of autism due to a "crossover" in genes. And, he told me that up to 5% (that would be one in 20) kids with TS are on the autism spectrum. Makes sense to me that if TS is related to autism that PANDAS could be....maybe....?

remember the john travolta movie that he sudden has outrageous intellect and motivation. then they discover he has a tumor that is causing differences in his brain. i've wondered about this b/c isn't it such a small, small percentage of our brains that we actually use? i don't know that i've seen anyone report a 'back to normal' from giftedness when they're kids are healthier. Here is one comment about your "back to normal" comment. My ds9 possible PANDAS was at his worst as far as PANDAS symptoms at age four. Around this time and into age five he became very very interested in anything space related. He studied adult space books and had memorized all the planets in their order from the sun. Then he also memorized all the moons to each planet. And there are a lot of those. His PANDAS symptoms are in my opinion very mild, and there is no way he has either the desire or capacity to memorize such facts now. I really thought he would have Asperger's because of all the overly intellectual behavior at that time.

OMG. I have said on prior posts that I am pro vaccine. I am rethinking my position, if this article is true.

When my ds9 was 3, he would line up letter puzzles. It got to the point he wanted to spell book titles, ect and we would have to go to the store and buy more letter puzzles to have enough letters. We thought it was neat that he could spell and use letters but now we realize that was OCD. He is our oldest and we were sucked in. He also had transient tics at this time but we did not know what that was either. He had strep around that time; but his worst flare was at age 4 with a respiratory infection and was neg for strep then. This is why I feel the docs need to be careful of the strep and sudden onset thing. At the flare at age 4 he was completely nonfunctional, but at age 3 he just had quirks.

After reading the responses to this so far, I see some are concerned about the narrow definition being used in the article above for defining PANDAS. I really do not know how I feel about this myself. Is it going to be within 48 hours of strep? Or is it going to be the severe and debilitating onset? Does everyone really always have both? I also notice the last statement, where they say tics are not REALLY a big feature in all this. It sounds like they mean the OCD, separation anxiety and handwriting issues are more at play. But, it seems to me the handwriting deterioration would be more aligned with a tic problem. If this is the criteria they use: within 48 hours of strep a severe onset of OCD, separation anxiety and handwriting issues, my son would not qualify for the study. But of course, I am still deciding myself if ds9 is PANDAS or TS. It's just that I keep getting this nagging feeling in my gut that there is more to it. I'm not sure being this narrow is a good thing, that's all. If we only use kids in a study with these limited issues and associate it with strep only, we may be back to what Kurlan found. But maybe not, Swedo kind of proved it before. It is all so very confusing to me....

Hi there; My ds9 possible PANDAS or TS has many tics that come and go. One tic he has had is where his eyes quickly dart back and forth, and then he will kind of move his head in a way, almost to try to compensate. Not sure if this is what you son is doing but wanted to add what my kid does sometimes in case it could be that.

Johnsmom: I am at work too. It is hard because when I am at home I am even more busy!! The amazing thing for me that I have found on this forum is other links to PANDAS my son has I did not think about before: Sensory integration issues Auditory processing issues Chronic, many allergies School issues Immune issues Looking like Aspergers but not Aspergers Chronic sinus issues, this one is new. We have a call today into the ENT he saw last week. Since you have the elevated titers as I said before your case seems more clear cut, more of a "slam dunk". When my son was four and five he was more severe and I would get teary at work too. I did not have this forum then. I wish I would have, it would have helped me so much. But even now that ds is 9 my husband and I still tear up when we talk about how severe and little he was back then, when all he wanted to do was eat and could not eat. My ds does not remember that. I teared up today when I read Dr. T's post about the little boy with anorexia symtpoms who is dying. I mean, I don't know the story but I hope that kid is getting IVIG or PEX.

This is more of a question: did you do the PET scan? If so, did you get the result yet?