WorriedDADNMOM

Good Morning all!!!!!! Middle dd7 highly suspicious of having Pandas/Pitand-----Classic case after confirmed strep and subsequent exacerbation's after confirmed strep in house---- all symptoms right down to the chorea like movements. Seeing Pandas Doc early Dec. My Question is with dd 8. Some history. June 10 sore throat vomiting slight fever---swabbed confirmed strep. Late June to Middle July severe anxiety/sep anxiety that lasted all the way to early October. 5 days of Zith took care of the anxiety at my request from new ped. Her glands have remained swollen this entire time. We did not track the vomiting(maybe once or twice) thru late June/July/Aug, but she had alot of malaise, anxiety/sep anxiety right up until the 5 days of zith. But dealing with the old ped and the new ped, we have been documenting. June 10 vomiting with confirmed strep, Sept 11 severe malaise,sick, vomiting----was very scary since she was hitting her chest after the vomiting. October 11 Vomit, November 7-vomit, and now yesterday Nov 29 vomiting and 101 fever. We do know from blood tests on Aug 30, she had had high Igg for EBV, what I think now was in conjunction with the strep back in June. She has since been aggressively swabbed at the new ped with neg results. So we really do not know what is going on. The vomiting in this cyclical nature is of concern. 1) Could her glands be "leaking" strep into her throat down to her stomach over time, thus causing the vomiting and malaise?? 2) Could she have strep in her gut and when the concentration gets high enough, she exhibits malaise and then the vomiting???? 3) I know EBV can be tough to deal with and can take a toll on the immune system and take along time to "clear". But 5 months???? With the improvement in glands,anxiety and overall feeling well during and post 5 days zithromax in early oct????? 4) What blood tests could/should I ask the ped to do today?????------ as the school would not let her come back from yesterday with the 100+ temp and vomiting. None of this feels right at all. But, will keep fighting it every day till we get em healthy. Please respond if you have any insight. Thanks!!!!!

I think it is important to remember that OCD in maybe its milder forms can be linked to ODD,meltdowns, bedtime routines, other emotional lability etc..... Plus, much of the behavior stuff is always subject to the parents interpretation of what is going on with the kid. Ahh, but when the tics/chorea/movements that just do not look right appear, you start asking what is going on?????? If you start reading, many of the neuropsych diagnoses have SO MANY overlapping symptoms, even in adults. Does anyone else ask "Why in the world, is it so hard for docs to believe in Pandas/Pitands and treat it????? With all we know about Scarlett Fever, Rhumatic Fever, Sydenham's Chorea and the list goes on.............. The more I dig, the more I get ticked off and feel as if we are not being told the whole truth from the AAP. God Bless you on your journey.

I would echo Nicklemama as our "first" indication was a tic of the eye,forehead, eyebrow. But our dd had alot of severe emotional lability just prior to the tic and for several months prior, what I would consider pretty emotional. Same thing, we wrote it off as-----tiredness from all day 1st grade, not feeling well, pushing the independence envelope. If your ds is oppositional defiant, or "the crime doesn't fit the punishment" type of crying----meaning overreaction to being told no or little fights with siblings that are a nuclear meltdowns. OCD and lability can present very differently and vary widely from kid to kid. I would say if you have a primary ped that is willing to do abx that aggressively, then do it. My DD's have not responded well to amox as it did nothing for dd7's tic and dd8 strep infection-----anxiety post strep. Penicillin for dd7 took tic away, left her on it for 4-5 months with good results. Have since had other issues where co-infections were treated with zith with some good benefits, but I think they have been too short----in our case that is. I cannot stress enough about getting co-infections checked via blood draw. DD8 had EBV IGG high titer, I think concurrently with strep a few months prior to blood draw. DD7 had very high mycoplasma IGM titer level at blood draw. We have no idea how long she had this acute infection. My gut tells me it was going on for along time. Many of the answers we have gotten have come from this board and reading others stories. The biggest hurdles for us has been getting the peds and staff to believe us and if you have someone that is willing to be aggressive, I think it is a good thing. If the peds are passive, then move on. YOU ARE YOUR CHILDS BEST ADVOCATE!!!!!

This is why I asked. I am somewhat concerned about this. I don't really care how my dds get fixed, just trying to head off the run around that I may get.

What is everyone's gut regarding Pandas-------Is it................... 1) Immune response related to strep infections. 2) Week or too short of abx that does not eradicate the strep thus causing the immune issues. 3) Or.....................?????? We have Infectious Disease doc appt. I am beginning to feel as if the amoxicillin has failed thus created "untreated strep" and sent my kiddos' immune systems into overload, per se. Any thoughts???? Still working way thru this mess. Thanks for the input.

I have a question----anyone have kiddos diagnosed with Pandas by an Infectious Disease doc?? We have appt at ID and wanted to pick any brains with experience with ID and their experiences. Please respond.

Thannks all!!! Mom-Me-----When was your son diagnosed???? Where are you located??? Found a good Pandas doc/ ped yet??? I see you are a "newbie" to the forum. Much of what you talked about sounded like CBT which I agree with. Teaching our kiddos how to deal with stuff. My only issue with this whole thing is--------What is the root cause???? We know there are a lot of auto-immune issues that cause a multitude of problems for people. We know that HIV causes Aids. We know, I suppose that HPV causes cervical cancer. We know untreated strep is dangerous and there fore it is treated prior to the birthing process if moms tests positive. Untreated strep can cause rhumatic fever and eventually carditis and eventually heart failure. Other bacterial infections if left untreated makes the immune system open to future infections. I just don't get why there is so much resistance in the medical community to the whole neuro/phych issues caused by bacterial or viral infections and treating aggressively with abx. Seems as if the pendulum should swing back the other way and the medical community should use the tools it has. I refuse to believe, "this is just kids that don't feel good, or these emotional issues are normal growing up stuff. My kiddos have had drastic start of some of these issues then drastic stop of issues post abx. I don't understand it all, but I will figure it out.

Sorry guys for the multiple post---cell phone acting up.

Jag10----Amen is right!!!!!!!!!!! MY SIDEBAR RANT----------Teachers, Peds, School Nurses, nobody has fricken even heard of this OR "we have heard of it but we just don't know what to do". It is almost like pulling teeth. Please Oh please stab my daughter in the arm to get blood for a test cause I am just crazy to think something is wrong with my kid. Please, I just want to give all my $$$$$$ to doctors who so desperately need more. Needless to say I am pissed off!!!!!!!!!!!!!!!!!!! COLLEEN, BY ALL MEANS DO THE RAPID AND LONG STREP TEST. ABSOLUTELY THINK ABOUT GETTING ASO TITER TESTING FOR PREVIOUS STREP TEST. PREVIOUS STREP HAD STARTED MY DAUGHTERS NOSE,EYE,FOREHEAD AND EYE ROLL TICK. PENICILLIN DID THE TRICK FOR US---FOR ONE TIME. NOW WE ARE BACK AT IT AGAIN. I WOULD ALSO GET YOUR CHILD TESTED FOR MYCOPLASMA, S.PNEUMONIAE, EBV AND ANYTHING ELSE YOU, YOUR PED OR OTHERS ON THIS BOARD THINK MIGHT BE HELPFUL. YOU KNOW YOUR KID------NO ONE, REPEAT NO ONE WILL ADVOCATE FOR YOUR CHILD BETTER THAN YOU!!!!!!!!!!!!!!! Sorry guys-----had a very scary episode last night----read my previous post. Truly scary.

Anyone battle Mutism during flare/new infection??? Dd would not speak for roughly 2 or 3 hrs this evening did everything sign or writing or sharade. Very disturbing thoughts both written down and spoken after she snapped out pf it. Please respond.

Yes in NW OH near Toledo. Yes please pm me. Thanks

Yes in NW OH near Toledo. Yes please pm me. Thanks

Yes in NW OH near Toledo. Yes please pm me. Thanks

Yes in NW OH near Toledo. Yes please pm me. Thanks

Yes in NW OH near Toledo. Yes please pm me. Thanks

Hi All!!!! Have an appt set for January 2012, maybe earlier, with Dr. Nevada Reed out of Twinsburg,OH. Anyone had their Pandas Kids treated/evaluated by her????? Any feedback is appreciated.

Anyone on this forum from NW Ohio??? Looking for support, doctors, exchange of ideas, etc........... Have tried contacting Cleveland area off Beth Maloneys FB page to no avail.

Also, has anyone heard that Amoxicillin is the "standard protocol" ---first choice????? I have not been happy with it thus far. Any other input would help.

Just adding my two cents-- DD6 sudden onset of eye tic forehead scrunch and severe emotional lability DEC 2010. Took to ped put on 10 day Amox due to + titer level although low.--did not see any improvement till days 8-10. 4-5 days off right back to same tics. Put on 30 day penicillin within 3-4 days tics nearly gone. Put on prophylaxis penicillin until end of school year---happy with results. Sept of 2011 + strep for child babysat in home in conjunction with slight head bob/nod and few and far between eye/eyebrow tic. DD8 in June of 2011 +strep culture, not notified for week, put on amox with no problems. 2-4 weeks post ABX(amox) severe anxiety ensued. Severe separation anxiety. Took all three dd's to new ped. All cultures negative. However glands still swollen, put on Zithromax for 5 days. Both dd 7&8 yrs tics and anxiety better. Question, should I request 30 days Penicillin for both? or only the one who developed the tic????? New ped is more open than old ped.

Yeah, Back in Dec 09 she got it from a water park and I the dad got a staph or strep lesion. The gave abx(amox) and it cleared----I thought. Seemed as if periodically after Dec 09 thru even now she would get sometimes 1-3 or 3-6 little bumps around lower half of face or sometime on the fore head. Very faint in appearance. They would hang around for awhile, then go away. They never broke open and got crusty like normal or like back in Dec 09. Just a suspicion of mine post Dec 2010 tic disorder after positive ASO.

Ariel---thank you!!!! I will most likely pursue this nose swab as a possible course to take. Since my dd7 had Impetigo at 5-6 years old, again, amox was prescribed. She has had at times the slight little bumps since then just like full blown exacerbation, just not full blown(early stages almost unnoticeable). Just little bumps around mouth and nose. Thanks for the help.

So Bees--------------How do they test for strep in nose, perianal or even fecal matter----have heard they do stool sample??? Swab the nose????? I have not gotten a diagnoses of Pandas but I highly suspect it. I have just left our old ped since we did not find out for week our dd8 was strep pos for whole week. 2-4 weeks later, severe odd and separation anxiety started. We just had them all 3 swabbed very aggressively(concerned about previous ped regarding swabbing technique) in the throat and they all came back neg. Put them on zithromax for 5 days. Glands got better, but now they, especially oldest dd8 glands right back to where they were. DD7 doing what I think is a head tic-----kinda like a bobble head, only just up and down during downtime or inactivity----same as last year when she had the eye/eyebrow forehead tic. Some questions, in addition to ones above, for anyone who can answer please-------- 1) Can strep be in nose with out any major symptoms???? What would symptoms be???? 2 What are the perianal or gut strep symptoms???? Looking for next course of action. In NW OH. Would appreciate anyone with more personal experience with this. Have only been dealing for less than year

I am just getting going on all this stuff again now that school has started. Middle dd and oldest dd have had issues even this summmer early fall. Still sorting it out. Have not really had the time or desire to post since it has been stressing me out. I assume you know about the short "Rapid test" and overnight culture. You indicated you did the test yourself which indicated a rapid to me. Problem with them is the false negatives. Did you take to ped for overnight(long) culture???? If your gut tells you somethings up, then go get blood drawn for ASO titer level to find out if previous strep infection. Keep pushing. My dd's did not have classic symptoms of strep throat. If you think somethings not right, nobody knows your kids like you. I will say dd 7(middle) did not have any symptoms but developed eye/eyebrow tic. ASO turned out positive. 10 days Amox did not help end tic, penicillin was the trick for us. Now dd 8(oldest) developed odd,and severe, I MEAN severe separation anxiety after having strep in mid-late June 2011. Rapid at Ped negative, long test(sarcasm) since they did not let us know for a week it was positive. Talk about being ticked off. Amox was the abx prescribed. No real help with Amoxicillan. Symptoms have subsided some since taking to new ped and doing 5 day zithromax earlier this month. For us, the exacerbation's started a few weeks to "maybe" months after infection. Very tough if you do not know for sure of positive infections. You can read many of my early post from Jan 2011.I am not clueless about Pandas just overwhelmed on what to do next. Hope this helps.

OK---have posted here b4. DD6 diagnosed with tic disorder post strep, positive, albeit low, titers. Two rounds of ABX--amox and penicillin. 30 days of penicillin did wonders. Now done----still have concerns. Have been trying to remember all these issues with dd6. For about a year the emotional liability and odd have been occurring. Assumed it was school----1/2day kindergarten everyday and all day 1st grade. Now that she has had the tic disorder and positive strep the past few months has me thinking. All our dds 7,6 and 5 got a croupy cough around Christmas of 2010. Also, dd5 has for the last few months, since Christmas very bad odd and emotional liability----really whacked out stuff for a 5yo or "where in the world did that come from" moments. Similar to dd6 issues. Have gotten ASO titer done on her yesterday awaiting results. Will update What I am wondering is------It seems as though the emotional liability and odd may have been the 1st signs(we did not recognize) then comes the tics and ocd and other more outward signs of "somethings not right" not just the "my kid is acting like a brat" stuff. HAS ANYONE ELSE EXPERIENCED THE SAME PATTERN OF EVENTS??? I am thinking this could be dd6's 2nd or 3rd strep(no outward signs) event just did not notice till eye tics. Also am thinking this was dd5's 1st strep due to dd6 positive titers-----again----waiting for titers test for her. BTW---dd5 just had well-check yesterday and ped is more open to the whole pandas thing than when I first posted about dd6 back in Jan '11------which is good, I suppose. Sorry for the rambling. Looking for a pattern but just too much unknown at this point. I know I need to be doing a journal. Probably will start one now. ALSO, ANYONE KNOW OF TOLEDO, OH NW OHIO, SE MICHIGAN PANDAS PED OR DOCTOR????? PLEASE ADVISE IF YOU DO. I ALSO WENT ON PANDASRESOURCENETWORK.COM AND REQUESTED PED OR DOC INFO AND THEY HAVE NOT RESPONDED. THANKS FOR THE HELP!!!!!!!!

Thank you everyone!!!!!! Right now things seem better. Really trying not to worry. Right now we can really count on one hand or less than how many eye tics we see a day. Behavioral issues are very far and few between if any. We are hopeful but we are in a wait and see mode. We are just about 1/2 way thru the 30 day penicillin treatment. We are in NW OH which would include Toledo, Sandusky, Fremont, Bowling Green, Lima, Defiance and Bryan, as a general area. Will keep you updated and will continue to view these posting for helpful info. Again, thanks to all the participants of these discussion boards.