Kiera

Great news! The word is getting out there!

No, ds is not immune def. I've talked to another local Pandas mom who's dd's tonsils also showed pseudomonas (no immune def, either) so I don't know if it's just an oppertune infection or what?? And no also, on the smelly breath, thanks goodness! Perplexing!

eljomom, thanks for the info. Jag10 asked about "hyponasal", not quite sure what she meant there either. But my ds is always congested, but improved lately with nasal spray and zyrtec. Also has hepafilter in bedroom.

I just spoke to a geneticist a few weeks ago regarding some abnormalitises in my ds. She's been working on the genome project the last 10yrs to try to find a genetic link to autism and so far it has been elusive! Initially, they thought it would be easy to establish, just test the blood of 100 kids with autism and see the similarities, but no, still looking for it!

Working on that now, have to get the paper copy with the sensitivity list, there are many to choose from.

Always nasal that were put down to allergies, he was on veramyst nasal spray and zyrtec to help!

Hi everyone, My ds just had T&As and sinus drained last week and the ENT just called with the culture results : Both tonsils and adenoids grew Pseudomonas (a bacteria, not good), and maxillary sinus grew gram neg bacillis - beta lactamase (even worse!). He himself was a bit shocked, he doesn't normally culture T&As but I asked him too, and he said he would be surprised to find this in any of his other patients, and the augmentin he's on does not cover it, he needs the big guns antibiotics! BTW, my ds still has some OCD and tics, however has not had a meltdown since surgery (touch wood). Hopefully now, ivig will just dilute the circulating antibodies to relieve the rest of the symptoms. I'm excited, in a perverse sort of way, to have found this hidden infection. From the outside, the ENT would not have recommended T&A, as tonsils were small and normal looking. The clogged sinus we found on MRI as part of work-up. I'll keep you all posted!

I did say DANs "Kinda" give this service! I did the DAN thing several years ago, yes everything you said is true, they're not the primary Dr etc but my point is they do look at the whole body like it's connected, try to get to the root of the problem, treat the cause not the symptoms etc, so there are some benefits to them also. But as in everything, there are good ones and bad ones, a personal referral is best. They can be an important contributer to your team of Drs, but unfortunately, very costly!

Way to go 1tiredmama!!! You just get yourself to the right ivig Dr and persue all treatments you want to persue. Love your post. I usually have all those great thoughts AFTER leaving the Dr's office, but I'm going to go in armed next time! And you're right, there's no waving the white flag on this forum either! There are many avenues to try and us mama bears never give up!

I work in an ICU in an area of the country with a large senior population and this is becoming popular. Again, it is a large group of Docs, so you've always access to a Dr. I can see some benefits to it, particularly in an older person with multiple health issues. In fact, I would argue, it is the dedicated drs who actually want to practice medicine the way it should, that go for this idea but the way the system is set up now, it's like a production line, Drs don't have the time to go indepth with patients at a typical Dr visit. The extra money is the money you would pay if you went to an alternative Dr as they do hour long visits, really get to know the patient etc. The patient that came into my unit with this service was indeed on his cellphone with his Dr, and I work nightshift! So if you have a really good internist, have many health issues, have the money, I do think this is a good idea. Yes you should expect this from a Dr anyway, alas that was the way things worked in the old days but these days everything comes down to cost - therefore wait an hour, see Dr for 5mins, fill your script and off you go! As regards Pandas, we can only dream! You do kinda get this service with a DAN Dr, they look at the whole body, promote more natural remedies, but you pay for it and no cellphone or immediate access!

Reporting from the arid desert climate of Arizona, I can tell you that those school letters of strep notification keep on coming just about every month through out the school year! Together with pink eye, head lice and all the lovely school age afflictions! We have 17 families on our support group e-mail list and we just got started! And Maui has dengue fever, but lovely to visit!

This is severe OCD behavior! Have you started on the PANDAS/PANS journey yet? Throat swab, blood tests, antibiotics etc, etc?

The neuro is not one of the experts, just a local neuro who believes in pandas and treats (not ivig though) so that's why I'm flying to see Dr K next month. Initially we saw the clogged sinus incidentally on the brain MRI (which was done as part of a complete work-up). They have ways of looking in there in surgery to suck it out. My ds 9, has severe symptoms, has had chronic issues since infancy and every year the list gets longer, SPD,anxiety,ADD,tourettes,GI problems, allergies etc and on and on. Everything exploded 2yrs ago with his 1st strep throat so my theory is - all his "diagnosis" are actually just pandas "symptoms" not disorders in and of themselves, so I'm just beginning to believe pandas has been his problem from the start but just came to light 2yrs ago. He's had a couple of remissions since diagnosis but seems stuck in an exacerbation since last April. His symptoms are rages/meltdowns/sensory off the wall/ADD - nothing done at school/tics/transient OCD. Can't wait to see what Dr K feels! Will keep you updated.

My ds has the opposite problem- persistently elevated titers (just recently came WNL) with neg throat swabs and cultures?? How does one explain this? Streptozyme just came back elevated so strep is hiding out somewhere I guess. Just had T&A so we'll see what culture of tonsils shows!

My ds just had his Ts & As out yesterday. I decided, after my research, to just go ahead and do it and I am so glad I did. His tonsils were small and normal looking, he hasn't tested pos on throat culture since the initial onset of Pandas 2 1/2 yrs ago, but titers have been mildly elevated all that time (think he's a carrier). Well anyway, ENT pulled them purely on the advice of neurologist for pandas, he said they were kinda hard to get out due to scar tissue, which indicates possible chronic infection! One of the sinuses was completely full of mucus, despite being on steroid spray and allergy meds and antibiotics. Everything was sent for culture so I'll get those results next week. We switched antibiotic 10days prior to augmentin (full dose) for broader coverage and will continue 10 days after. The ENT said they don't usually give a dose of IV antibiotics intra-op, but I asked him to and he said sure (love the ENT!). Everything went well, a bit sore but pain meds to take care of that and I'm just so glad it's over and wish I hadn't belly-ached about it so much and did it sooner! I'm planning ivig next, so wanted to get the tonsils out prior so as not to undo the effects of ivig by doing it post. I'll keep you posted.

I'm presuming you're giving the augmentin on a full stomach as it is severe on the tummy??

This could well be the case so you move on and get a pandas Dr! If you want to start AB immediately, Dr T in NJ will do phone consult, order the app. tests, order AB and talk to local Dr if he is willing to listen. It'll cost a few bucks but well worth it! As regards your other post and family not getting it - don't waste too much energy there either, it's common for those not around the child often or the dads (sorry guys) but not all, to minimize it all. Go with your mommy gut instinct. We are your family in the meantime, we get it!

Augmentin is a good one but is severe on the stomach, needs to be taken with food and pills are huge and don't taste good. Ped might not want to start with this though as it's a combo drug, he might want something less potent, keflex is good, but there are many and sometimes it's trial and error. Also, FYI, you may already know but PANS is the new proposed name for Pandas as not just strep can trigger exacerbations - virus's, mycoplasma (walking pneumonia), lyme, etc. PANS stands for Pediatric, Acute onset, Neuropsychiatric Syndrome!

A few answers to your questions 1) Great that you have a ped open to new info, however, when it comes to pandas, problem is they don't know how to treat and don't know latest research info. They'll probably go to NIMH website which still has outdated info on there (they're doing clinical trials right now so it can be updated at some point) 2)Still necessary to treat even though exposure has passed as it's the circulating antibodies that are causing the problem now, not the original infection (antibiotics help with this due to immune modulating effect) 3)Side effects of antibiotics are generally GI problems, this can be counteracted by using a good probiotic. Also, when they talk about drug resistence with overuse of antibiotics, they usually mean a people as a whole, not just one child, eg if the whole population went on permanent antibiotics over time, we as a race would eventually develop drug resistence, but you got to weigh the risks/benifits on an individual basis. If your child is resistent to one, there are many others to try. Also if your child has a mild case as like dschneider's case, then maybe just a longer than usual dose is needed per infection but not continuously. Rheumatic fever has a precedent for long term antibiotics with no ill effects. 4)Is it possible to grw out of it? Jury still out on that, many theories, when thymus gland shrinks in teenage years some can resolve, but at least seems to get more managable with age, esp. with treatment 5)Is this the worst of it? Impossible to say, each kid's course is so variable. I'd be surprised if it went completely away on it's own, never to return. But it may just stay at the current level of mild OCD and transient tics. Look up the full list of pandas symptoms to make sure there aren't other symptoms that could be attributed to pandas. 6)My gut feeling would be to agree with dschneider and start a prophylactic dose of antibiotic (after seeing a pandas specialist). That way you're minimizing the problem from the get-go and keeping it under control. Dr K in Chicago has been at this a LONG time and is an excellent choice for an opinion. I have to fly to see him! 7) Don't worry! Your daughter's symptoms are mild and you're on the right track if things get worse at a later point in time, you won't be wasting years trying to figure out what's wrong! There's lots of hope!

Highly suspicious for Pandas given that it started following a strep throat! Did things improve following the 2nd dose of antibiotics?? I would also advise going to the nearest Pandas Dr to be fully evaluated just in case it doesn't improve and new symptoms start. In the mean time, keep researching and reading here as you'll get a wealth of info here. (don't be scared off by some of the more severe cases posting here, there is a wide range of symptomatology) and good luck!

When my ds is in a flare-up (like right now) sensory issues go through the roof! He goes off even his old favorites, smells bother him, had a meltdown the other day due to his sister's breath!! So taste and smell may have a lot to do with it. But the fix? Well, getting at the root cause of Pandas is the way I'm trying to tackle it, so tonsillectomy tomorrow and Dr K next month for ivig. Just sorry I didn't treat more aggressively sooner! Hope you find some answers. I'm in the SW also, and yes, severe lack of experts here, even though some local Drs are believers and willing to try and treat, at this point I'm going to cut to the chase and get expert advice.

Thanks for the replies! So my next question - what do you do if it indicates he's a strep carrier? How do you eradicate strep carriage in a pandas child? What did they do for your husband socalmom? My son has been on keflex 250mg x2 daily for some time now. (also tried amox) Does it mean we need to keep experimenting with different antibiotics?

Hi everyone, My ds's ASO titer has finally come within normal range after 1 1/2yrs! The Dnase B got within normal range 8mts ago, but we just checked the streptozyme and it's 200 (normal < 100). Does anyone know what this means? Does any of the pandas experts check this titer? Also, his titer trend seem to have no bearing on his symptoms!? They've been on a downward trend since we first starting checking 1 1/2yrs ago but in that same time-frame he's had exacerbations/remissions and now is at near his worst! Makes no sense to me. Regardless, just made app to see Dr K next month and hopefully ivig to follow. (I'll ask him about this) Any insight is appreciated, thanks.

Praying for you and Ally and all to go well.

Very enlightening how she describes those moods she gets in like drunken, very sad and child-like. This is my ds, he goes from rages to slap-happy to babyish, with bits of normalacy thrown in, but he's never been able to verbalize how these moods feel! I wonder is it happening more often to older kids or just getting more attention and more older kids getting diagnosed? Either way, it is great insight for dealing with younger kids!