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Hello all!!!! WE NEED YOUR HELP!!!!!! Please forgive spelling an rambling thoughts, typing fast.

 

We have a 3 daughters all close in age-----here is our story.

 

Middle girl is 6 almost 7. Has always been very bright to say the least. Just figured she was getting smart via osmosis from older sister. But she has always been a little different, smarter without the effort, adult like manipulation. Chalked it up to being the middle kid and lack of attention.

 

Interesting History-----

Daughter started 1st grade in 2010----was very tough due to what we thought were just long days for her. Since about the last few years (2-6years old), our daughter always dealt with a little separation anxiety, fear of people in costume, refusal to do stuff bed, dinner, whatever etc......seemed normal. Dinner was the biggest fight.

 

1) December of 09 both this daughter (impetigo) and dad (staph or strep lesion)from a waterpark---- both went on abx---everything fine.

 

2) Start of 2010 1st grade school year, ODD(oppositional defiance disorder) seemed to present itself(looking backwards)--again thought is was just being tired and long days. Again, she has always been what we thought---just a different personality.

 

3) During, I would say Oct, Nov and into December 2010---she started a little nose twitch(thought is was allergies since dad always deals with it) along with more severe ODD, being withdrawn----very crazy things being said--- what we now think was the emotional liability, tantrums, thoughts of dred, refusal to go to sleep etc......

 

4) Just before Christmas of 2010, all? I think, of our girls came down with a croupy cough. Pretty much did not last long. But, our middle daughter developed a combo nose twitch, eye roll, scrunching of forehead and blinking of eyes that went on for a week or so. You name a Panda symptom and she had it during this period. Not really sure of the OCD part though. I will say, her math interest actually became intensified and improved(contrary) to the point where she would want to add 5-7 digit numbers and she understood the concept of carrying the 1 or 2 and so-forth.

 

5) Took her to the Ped and discussed prior to her seeing our daughter. Informed her of the above. She explained tic disorders after bout with Strep. I had known this since I started to research extensively tics in kids and what causes them. She checked our daughter out and viewed the tic. She ordered ASO Titer which we did a day later and it came back positive--albeit low---1 to 100 which means nothing to me. Also, she did recommend a ODD book for parents at the appt.

 

6) She did a round of amoxicilan for about 8-9 days. Took a couple of days, but the attitude/behavior/tics drastically got better, although is was very see sawish--some days we thought---great--making progress then bam--lots of tics and attitude the first few days. By days 7,8 and 9 she was great. I would not say things were perfect, but greatly improved. After the abx was gone, she started to go backwards again.

 

7) Called Ped again and asked her to call us. She seemed to indicate that PANDAS does not really exist but that we could do a 30day course of penicillan which is targeted directly at Strep. See said it would probably help via just the placebo effect. But I strongly disagree after seeing the 1st round of Amox and now Penicillin. After that, she recommended a neurologist about the tics and behavioral stuff.

 

8) We are about on 10-11th day of Penicillin and she is/ has been doing very well. Sweet pleasant, tics not all gone. But no where near the frequency or intensity. Penicillin seemed to work better and faster. Not sure why.

 

SUMMATION---

1)Based on all the info we have found, our daughter has exhibited most if not all of the PANDAS symptoms. Our doc knows about post strep tics.

2) I have ask Ped about rest of family getting tested for ASO titer values or putting all of us on abx----she said no.

3) Then why do abx anyway if there is no link in tics and strep.

4) I have dealt with the whole drainage, colds? etc as the other worried dads story here. Could I be the carrier.

 

UPDATE---today daughter stayed home with slight fever 99.2 last night and this am,while on penicillin -----which is why I am asking for help. Afraid I won't get help from our Ped.

 

Please respond with any helpful suggestions, courses of action, questions to propose, Docs in NW OH or anything you think is pertinent.

 

Thanks in advance for your time!!!!!!!!!!!!!!!!!!!

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Welcome. First, ODD is a symptom of PANDAS and it was once explained to me that with some kids ODD goes along with OCD. You mention you aren't quite sure she had OCD, but sometimes parents don't quite realize what they are experiencing is OCD. I'm not saying she it, but here is a link to examples of OCD in young children as seen by PANDAS parents on this board. Perhaps print it out and the two of go through it like a checklist if she has experienced it

Signs of OCD in a young child

http://www.latitudes.org/forums/index.php?showtopic=6153&hl=

 

 

Next thing...penicillin. Few things on this. Penicillin and amoxicillin clears some people of strep, but not all. In the world of PANDAS, it is actually almost rare for amox or pen to clear strep. Here is a link on the failure rate of these antibiotics http://www.entrepreneur.com/tradejournals/article/169459644.html Also, some kids seem to first improve on penicillin or amoxicillin but it seems they start to backslide around week 3, probbaly becasue the infection isn't completely cleared. Also, there are some kids on here that backslide whne going off antibiotics. What I would suggest is first looking for a new ped since yours is already on the defense and then get a script for something else like Augmentin or Zithromax.

 

As for the rest of the rest of the family, you could start with "basic" strep testing...rapids and cultures. My 2 non-PANDAS kids are asymptomatic to strep but will test positive on a rapid. I always say start with rapids and cultures since if they come back postive you can start antibiotics faster. If anyone tests postive, they need to go for a follow up strep test 3 weeks after finishing all medicine. Again, I know it's tedious, but it sounds like you need a different doctor.When searching for one, call, ask questions, also for the first appt, you don't necessarily need all med files transferred. This will allow you to "feel" out a new doctor before doing the transferring of files.

 

Finally, here are a couple more useful threads to read

 

PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

PANDAS FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

Edited by Vickie
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you might consider having your ped run tests for mycoplasma. The dry croupy cough is a typical symptom. My son had very similar presentation to that of your daughter. After almost 2 years we found he had very high mycoplasma antibodies. He had this dry croupy cough several times over those 2 years (3 or4?) no fever, but the cough seemed to last longer than a cough usually does - 2 weeks or so. No sore throat, no strep (cultured negative). He ALSO had a rash several weeks (2 months?) before his "sudden onset". The rash I know know was perianal strep, that I though nothing of and treated at home with topical, over the counter antibiotic ointment. Never even took him in for it.

 

mycoplasma can also cause pandas, or pandas-like symptoms. It is difficult to get rid of once it becomes chronic, and only certain antibiotics - azithromycin, doxycycline,..there are a few others..are useful against it. Amoxocilin and those simialr to it don't effect it at all, it has a different cell structure.

 

There are two first level tests - mycoplasma pneumoniae IgG and IgM. There is also a PCR test - considered more accurate if you suspect your kids have had this for a while. The IgG measures if you were exposed and are making antibodies, the IgM measures if it isa very recent, active infection. BUT these two markers will go back to normal levels if there is chronic mycoP. infection...that is when the pcr test is used.

 

I'd also get her strep pneumoniae serotypes taken (hey if they have to stick your kids - get as many tests done at once as possible!) . If she fails the strep pneumoniae titers - don't do the "challenge" test without very careful consideration. If your children received their immunizations, they should make strep pneumoniae titers (at least 75% of the 14 they test for) if they don't, the doctor may tell you you need to revaxinate and then re-test to see if the vaccine will stick...that is the "challenge test". ..Ask for basic immune panel while you're at it!

 

At the very least - start to watch for that cough, as well as chart behaviors and illnesses. tics, Bed wetting, frequent unination, insomnia, overly-concerned about body image, asking re-assurance questions, ANYTHING related to food/rituals/avoidance, insomnia, nightmares...these are all connected. OCD can present in a number of different ways, the kids aren't just washing their hands and lining up their toys - usually they have their own twist, and even a parent will sometimes have a hard time telling what is normal behavior and what is OCD.

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I've made this offer before, but I am willing to send my unmedicated - strep infected child over to any doctor's house for a weekend visit - with no takes-backsies! After 72 hours with my guy in full on flare, let them try saying it doesn't exist!!! :P

 

Our Dr. confirmed PANDAS simply by seeing how positively he responded to abx. But finding the right abx and dosage for your child/strain of strep is critical, and may take some trial an error. We had our dx confirmed by Dr. Murphy (one of the experts) eventhough all of our bloodwork came back totally normal every time.

 

My biggest suggestion - I know I sound like a broken record, it's always my #1 suggestion - keep a detailed journal of symptoms. Write everything down - no matter how trivial. This can help you identify patterns/improvements etc... that you can't always see in the moment. I's helped with skeptics immensely when we can show them a chart of progress on abx.

 

Another parent on here - Buster - came up with a good methodology for tracking symptoms - I think the original thread might be pinned in the helpful info thread at the top of the forums. I've taken his methodology and created an xcel spreadsheet that tracks and graphs. If you PM me your email address - I'm more than happy to share it.

 

Good luck!

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hahaha airial9... I've wanted to do exactly the same with my DD11 for the doubters, who I'm pretty sure think I am either exaggerating or it's all a psych problem... my only change is that I want them to come to my house where she is more episodic and stick around long enough to see her improve on antibiotics... then, tell me it doesn't exist and just exactly what IS going on with her! :P

 

WorriedDADNMOM, welcome to our forum and I'm very glad that you found us! The others have already given excellent advice. I want to add one thing that you most likely already know - you need a new pediatrician! I wish I knew one in the area, but we are on the east coast. Someone else here may be able to suggest someone who can help you. Also, I would encourage you not to be reluctant to travel to get medical care for your daughter. I resisted that initially, thinking our docs here (esp our pediatrician) would be able to manage her care. We just returned from seeing Dr. B in Connecticut, but my DD11 became so severely ill around Christmas that we had to call 911 5 times in 2 weeks and she was hospitalized for a few days in our children's hospital, where she received her first infusion of high dose IVIG. I wish we had not waited so long.

 

Some children can be managed early with antibiotics. As Vickie noted, it's important to find the right one for your child's case (Penicillin often does not do the job long-term, but Augmentin, Azithromycin and even Omnicef have better success) and as Norcalmom noted, it's important to have her tested for co-infections.... and with the appropriate testing as some of the screens will miss things.

 

You're in the right place - this is a great forum with a lot of valuable information. I wish you the best.

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I haven't read the rest of the replies, but speaking from experience here go heavy on probiotics. I did not do this and my boys guts have taken a turn for the worst, now they are on almost chronic antifungals (diflucan, ketoconozole) and even other antibiotics to control the gut bacteria that were a result of the initial antibiotics for strep/pandas. My boys have recurrent clostridia infections, which cause a whole new set of behaviors.

 

when we first started antibiotics my boys were on 40-80 billion cfu's of probiotics per day. for some kids that is enough. For my boys we had to up that to 1 TRILLION cfu's per day.

 

Point is, stay ahead of the gut damage...don't be afraid to go heavy on probiotics (must be taken away from antibiotics).

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I recommend that you contact pandasnetwork.org. There is a lot of helpful information on the website. And the advocate speer-heading this organization has communicated with many PANDAS parents and many PANDAS doctors and researchers, on top of having had intimate experience with the illness at home.

 

My child was misdiagnosed when he was stricken by this illness, and became much sicker over time. It's an illness that can be tackled, but it's insidious and dangerous, and can get worse. Do all you can to nip it in the bud.

 

I agree with the folks here who suggest that obsessive-compulsive symptoms are far more subtle and various than generally understood. Any unwanted idea, feeling, impulse that a person simply finds himself uncontrollably stuck on fits the bill. It's like a stereo needle being stuck in the groove of a vinyl record. So what might appear to be odd, stubborn, or "difficult" volitional behavior may simply be a product of a person being "stuck" against his will and without his understanding, while he struggles to cope with being stuck, and struggles to get un-stuck.

 

GOOD LUCK!

 

Tenacity

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Stephanie, How are you getting 1 trillion probiotics a day into your boys? What product are you using?

 

We tried VSL#3 DS (the one on Rx) and the stuff (only comes in a powder form) had such a repugnant smell/taste that we weren't able to figure out a palatable way to get it down even just once a day!

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Welcome. I would add to this discussion that OCD is not always so apparent in young children. Our DS is your DD's age. He turned 7 in Dec and started first grade fall 2010. He's been battling PANDAS for more than a yr now, only diagnosed in Oct 2010. He has a diagnosis of intermittent explosive disorder. Looking back, his explosions occurred when we interrupted OCD's we were unaware of. He has a "just right" and cannot stop what he's doing until its just right in his mind. We took it as defiance and would insist he stop, which resulted in a blowup. He also has counting ocd, similar to your daughter. He became obsessed w/ math and counting, adding, multiplying, etc... He's got many more ocd's when he's in an exacerbation. Right now, he's been on first biaxin and now augmentin since mid Oct and he's doing pretty well. I'd say he's about 90-95% of where he was before this all started. We were able to take a family ski trip over the weekend and had a great time.

 

He's also got a lot of Aspergerish type behaviors when in exacerbation. Loses his social skills, talks weird, talks about death/dying. Talks like a little professor, corrects everyone (adults included). We've also been told he had Aspergers back in early Oct just before PANDAS diagnosis but most of those behaviors have disappeared, as well.

 

He's never had the math difficulties. He's the opposite. He is reading and doing math well above 1st grade level.

 

Separation anxiety was horrible. That and the explosions were what caused us to go dr to dr looking for what was wrong w/ him for a year, not realizing he had ocd, which didn't become apparent to us until last summer.

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I agree with nickelmama - many of our tantrums were the result of us interrupting the OCD. Our son was very young (2) at onset, so we also initially misinterpreted his behaviors as the "terrible twos". Something we didn't realize until we were labeled OCD and started researching, in small children many of the compulsions/rituals must be preformed by the parent, not the child. So we were facing a WHOLE LOT of tantrums because mommy didn't pour the milk correctly, or didn't line up the food properly on the plate. You might see some of this with kids your daughter's age still. Once we figured this out, we saw an immediate reduction in tantrums - but a massive increase in our stress as we were performing elaborate rituals to keep our son from going all exorcist on us!!! (I don't recommend that course of action long term ;) )

 

and browneyesmom - I used to want them to see the recovery too - but now I'm just satisfied with the torture of dealing with my son at his worst! :D

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Stephanie, How are you getting 1 trillion probiotics a day into your boys? What product are you using?

 

We tried VSL#3 DS (the one on Rx) and the stuff (only comes in a powder form) had such a repugnant smell/taste that we weren't able to figure out a palatable way to get it down even just once a day!

 

www.customprobiotics.com

"D-Lactate Free Formula", has no dairy or strep. vsl#3 has both in it.

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Stephanie, How are you getting 1 trillion probiotics a day into your boys? What product are you using?

 

We tried VSL#3 DS (the one on Rx) and the stuff (only comes in a powder form) had such a repugnant smell/taste that we weren't able to figure out a palatable way to get it down even just once a day!

 

www.customprobiotics.com

"D-Lactate Free Formula", has no dairy or strep. vsl#3 has both in it.

 

 

Just wondering if you mix a powder into his drink or are you able to get him to take the capsule? We have difficulty getting our dd to take anything. If it gets in her body it has to be hidden in her food or something without her being able to taste it. We really need to get probiotics for her as well.

 

Dedee

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I agree that ODD and tantrums are a *huge* PANDAS symptom. Also, our child psychiatrist said that defiance can be a form of OCD.

 

I would throat culture everyone in the houshold b-4 worrying about strep titers. Be aware that lots of folks (including PANDAS kids) don't get elevated strep titers (even with positive cultures). It seems like girls are less likely to get titer elevations vs. boys. The reason for the culture is to check for strep carriers. Both of my kids get strep (culture positive) w/out typical symptoms (sore throat). Lots of PANDAS kids are like that.

 

In addition to keeping a journal, I would also rec. trying to take videos of "movements/tics" and even tantrums. THat way, if things go away with antibiotics, you have something to show docs.

 

Where do you live? Maybe someone can rec. a doc.

Edited by EAMom
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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.

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