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My suggestion is to maybe get a blood work-up done.... I know micoplasm and other illnesses play a major role in this illness, and you may just need a different antibiotic. My daughter (7) has alot of issues, now predominantly rage and repetitive phrases, but she, around 5 years old, began blinking constantly, went to the bathroom about every 15 minutes, did facial grimaces, grunted, etc. Currently, those tics are not present. I think with TS like behavior, one thing behavior just replaces another. And TS is a component of PANDAS. This is a really really complex illness, and doctors are still trying to figure out what works... I don't think Intuniv is a bad idea.. I may try it if my daughter's rages continue. Good luck!!! Noelle

I certainly will keep you posted on our progress. My daughter just had a few courses of Zithromax, and Augmentin, so, honestly, I'd love to give her body break for a few days before starting this new antbc. Good luck to you and your family!

Hi Faith. You are right. We are treating mycoplasm. Strep throat culture negative, but titers slightly elevated @ 200. Mycoplasm can apparently set this whole PANDAS phenomenon in motion, too.

We are switching gears, and, with Dr. T's help, are now going to try Biaxin for our 7 year old daughter. Her micloplasm igg's tested 5 recently -though she no longer tests positive for micoplasm - those antibodies are still very high in her system. Seems the Zithro did not help her - she was so angry and fell apart after returning home from school yesterday - and she raged until she fell asleep. This morning, she did not want to go to school, and it took both my husband and I an hour and a half to get her out the door. Amazingly, she missed an entire week last week, was tested on school work we hadn't gone over (she was very sick last week), and she did extremely well!! And, in school, this child is super super quiet, and very well behaved. Currently my husband and I are battling over whether or not to tell her school about our situation. I think not, as her only red flag there is a high number of absences. Wow, can this whole thing, when it is flared up, cause problems in a marriage.. Sometimes, I think it would be easier to pull her out of school altogether, and just start small. Other times, I am thankful for her being there, so she can get away from this monster for awhile, and so we all have time to re-group. Thanks for listening, everyone. And can anyone tell me if they had luck with Biaxin??? Noelle

God bless you. This is so tough to go through, and, when doctors are not on board or are unwilling to do research, things only seem to get worse.. My niece (17 years old PANDAS -EXTREME OCD) was on all those meds - increasing meds only made her symptoms worse. You need a strong antibiotic, Zithromax, Biaxin, or the like. A five day "burst" of steroids is something to try also, as this helps alleviate swelling around brain, and there have been many reported cases where this treatment has been proven to help. My daughter, 7, also has extreme sep. anxiety - it took us 1 1/2 hours to get her to school this morning, and not without tears and screaming, from all of us. This is a horrible horrible illness. I hope you find answers. Good luck to you. Noelle

My daughter had strep while on antbx. If your son does have it, you just need something stronger. Good luck!!

So so true.. and why is this dismissed by so many doctors, when studies are showing so many correlations in cases and in effective treatment? I think the link for Autism, ADD, ADHD, Tourette's and the like may lie inside of the research for PANDAS. And I'm not a doctor, just a worried Mom. If all of us see it, why can't they?

Perhaps the symptoms hang on longer, if the mycoplasm goes undetected. also, certain antbx that work for strep do not work for mycoplasm. My daughter currently has a mycoplasm igg of 5, and is raging alot - My opinion - get him tested for whatever you can. The more research you do, the better off you'll be. Good luck!!

So sorry your family is going though this. My daughter had her tonsils out about a year ago, and for three months before, was really really PANDAS symptomatic. Even on an antibiotic, a few weeks before she had to go in for surgery, she had to go on stronger ones, because her strep infection was still present. Post tonsillectomy, she was great for about one month to one 1/2 months. By great, I mean, quiet, calm, not screaming, or anxious. She still looked pretty sick - it took her a very long time to heal. And by March into April, I didn't think I was going to make it through the school year. Wonder if you are right about that.. maybe the strep just festers and goes elsewhere. I didn't have strong antibx afterword, as local peds are hesitant to treat PANDAS. Hoping your instincts are correct, and praying for you! Noelle

Thank you thank you thank you!!! We have named this "IT" to let her know that we truly differentiate the real "Amber" from the psychosis. But she is hard to reason with, near impossible, when she rages. Today, aside from a bit of the last of this working itself out of her, she actually is ok - exhausted, but ok. And all we have is today.. isn't it?? Thank you again!! BTW I just saw an article in an Autism magazine with a similar story. By chance, is that you? What a moving story.. I pray for your child, and help, help, help, for all the children and families going through this.

Thank you, Colleen, for your thoughts, and your wisdom. My daughter wasn't on augmentin for more than two weeks, but she was sick since Jan, and had Azith prior for micoplasm. It may be this c-dif. I don't know if she is on long enough for something like that to take hold. Thanks so so much!! Noelle Also, in response to your other question - the Azith is only a 200mg dose - 400 given on first day. And it's just until infection clears. I guess, then, we go back to Augmentin. Though, if this is happening to her belly due to antibiotics, what then??? I really don't know. Seeing Dr. T tomorrow. Maybe he can steer us... Hoping!! Thank you again!!!!

My daughter has been sick with a fever all week, and until today, she was extremely calm, which has not been the case here for some time. Today, she became increasingly agitated, feeling a bit better with no fever, but still stomach pain and diarrhea. Still, though, a good day overall. But tonite, tonite around 10:30, after having fallen asleep on the couch next to her sister a few hours earlier, "IT" is back, and with a vengeance. She woke up screaming that I had left her, and that she had to go to the bathroom. Screaming in an increasingly volatile way. Once in the bathroom, I couldn't get her to get off the toilet. She kept saying she had to go more, and then she began screaming about how she hates God - continually repeating "When I go to heaven all I wanna do is punch God in his big fat face" and saying she hated us.. We are bad parents... she wants a better family... Her tone would go from a whiney scream to the loudest highest scream she is capable of. When she wiped herself, she did so with such force I thought she was going to hurt herself. This went on until 2:00 am, with the wind down starting maybe 45 minutes prior. This episode was strong, very scary. My 7 year old child is not my child when this happens to her. This rage, these thoughts, they overcome her. Her eyes become dull, and clouded, her pupils really really small. The circles around her eyes go from black to red, and she really looks, God forgive me, psychotic, in these moments. As I am writing this, I wonder - does this affect these children like a seizure? What happens to their little bodies during an episode like this??? And, post fever, there MUST be a surge of some sort that short circuits their brain for a time - there just must be. She was recently on aug. for two weeks, but switched to azith. because micoplasm is still in her system. Maybe micoplasm is to blame. I just wanted to share this with you, and wondering if anyone has experienced a strong resurgence like this. Thanks so much, everyone, for being there.

What about losing teeth and getting new teeth? Perhaps gums breaking also allows for bacterial hosts. Just a thought!!

What I can't figure out is why, if he improves on antibiotics, the doctor would be questioning you! And a month trial is not too much to ask. You go for it until you get what you think is best for your son, and for all of you. Because this is still in "theory" stage, I think doctors just fear pushing the envelope with it. But long term antibiotics are used for kids with exposure to rheumatic fever, so I'm sure there is information available on the pros/cons of doing it. If your doctor stays this stubborn and you really believe you are onto something, find another doctor!! Good luck!!

Don't cut yourself short here. It's really not that "outside the box." You are family - I know your daughter's history. I was there when she had chronic strep infections. I was there when she had her tonsils out. And I was a witness to her getting worse on an increase in meds like Zoloft.. Your doctor simply did not swab her for strep because he gave her the antibx she needed. So you don't have alot of "documented" proof of past strep infections. But her tonsils were an absolute mess when they came out. And her exacerbations with OCD/Tourette's and rage symptoms DEFINITELY coincide with illness. She recently had micoplasm. Her symptoms again worstened. Also, there are several cases of PANDAS whose throat strep cultures were neg, and whose titers are in normal range. IMO, she is still is host for strep, but it's hiding elsewhere. You do have proof, and you'll be heard. Give it a bit more time. Love you!

Just wanted to let you know that the EXACT same thing happens to my daughter pre-illness!! She was really episodic on Saturday - and Monday, ran a fever of 102 - she has diarrhea also and has been out of school all week! She also seems to be sick way more than the average 7 year old. I want to say she has missed approx 25-30 school days so far since September. Between Oct and Jan she had H1N1 and micoplasm. And she is very very calm when sick. So much so, it's almost like she is "herself." She never looks really healthy, except in the summer, when she spends some time outside. She has dark circles under her eyes quite a bit. Also bipolar-like rage episodes, which come sometimes on just waking up!! We have an appt. with Dr. T. this weekend... I've heard so much good about him, and can't wait!! God bless you and your family, and I wish you the best outcome possible. It sounds like you are really doing all you can... BTW With this recent dry cough, did you get him tested for micoplasm? My daughter had a dry cough, and she tested very high positive for it.

I just had a sinus xray done - came back ok. Waiting on an immunology appt - hoping that covers allergies - Thx

No I did not get a diagnosis. I had documented proof of symptoms improving on antibiotics. One was written by a psyc who said Pandas is very plausible in this case an should be looked into more. THAT WAS 4 YEARS AGO. When the nurse practioner called and said dr. n does not think it's pandas I had alot of Questions which she responded with i went over everything with the dr. Does she fit the criteria yes to a tee!! did I take all the sore throat records with me yes what stunned me the most is when she didn't seem to think rages and anxiety were connected with Pandas. As far as your question about the bill Part one is patient intake part two is evaluation and feedback (does not accept insurance) I still can not believe I never meet this Dr. nor did she call me with any type of results. I feel so depleted. It is so ridiculous for this Dr. to dismiss this case, and not look into it further. As far as your last comment, I think what she was getting at in regards to your bill was whose name appeared on it? The doctor charged you for "her" services, and yet you never even met with her, and you cannot even be sure how much info of yours she was aware of -yet she is the one charging you. Does anyone know how to get in touch with Dr. T? I've heard many positive things about him - maybe he can help you.. (and me!)

Thank you all so much for the info.. My daughter's ANA's are speckled, also. It is amazing to me, and I am so grateful for - this forum! What a great tool!! Thanks again.. and good luck to all of you!!!

Seems every time she has fevers, she does not show symptoms. However, the day before her fever flared up, she had a horrible rage episode.. And usually, it's only a matter of days to weeks after she is sick that they come back. I'm not sure if what she has now is a virus - wondering if micoplastic pneumonia still has her. Her 1GG's are still so high. But she did have a bit over a week on Augmentin before this fever - as a trial run - diarrhea may be due to that as well. She has had Augmentin before, though, and never had such a reaction to it. Thanks for your concern.

My 7 year old daughter recently had bloodwork done. She had two rounds of Azithro. and still had IGG's of 5, and her ANA is 640, though her ASO is only slightly elevated, at 200. She has had exacerbation since Jan - end of Jan tested high positive for micoplasm. Currently has fever of 102, vomiting, diarrhea, and no sign of exaccerbation. Can anyone tell me about ANA's, and has anyone else expererienced PANDAS symptoms minimalizing during fevers? Please help!

What year is he? My daughter has missed much school both this year and in her first grade year, and, to be honest, I think their health should be top priority - after that, everything else gets easier. I have resigned myself to take this whole thing one day at a time. We have many good days here, but many bad ones too. I'm sure if he can focus on achieving small goals, his life, maybe even his rituals, will become less stressful for him (and all of you!!)

I think stomach pains, irregular bowel activity, throwing up, nausea, etc can all be indications. Also, my son was very fatigued. I would try to get her titers done and see if they can do a stool analysis. For some reason pediatricians don't think the stool analysis is necessary unless they have diahrrea, but if she has been having stomach/bowel troubles for some time, I would insist on it. Is she on abxs at the moment? Thanks for your responses.. Yes, she is on Augmentin, 600mg twice daily, but only for about two weeks - she has been on this once before in Sept. and, though she had some loose stools, her reaction (if that is what this is) was not near as bad. Also, she had 10 days of Azithro in Jan. for micoplasmic pneumonia - she was very high positive even after first round. Today and yesterday she has a fever of 101, along with stomach pain and diarrhea. She was not tested for strep today, since ped. said she will put her on Azithro one more time. Apparently, the pneumonia isn't quite gone?? She is often fatigued as well, and almost ALWAYS has dark circles under eyes, along with a pale countenance. During her exacerbations, she rages as well, and is becoming increasingly violent with each episode - kicking, punching, biting, screaming about how she hates God, throwing things, etc. Surprisingly, today and yesterday... she was PERFECTLY behaved. Wonder if all these kids are better during fevers.... or if the Augmentin may be working?? I fear the storm may come days or weeks from now. Last bloodwork done (Feb 5) showed ANA titers at 640. I will DEFINITELY look more into finding strep in these more elusive places. Thanks - good luck to everyone!!!

Just curious, when did she start the Augmentin? My daughter just started 600mg twice daily about two weeks ago, after finishing Azythro for micoplasm. Yesterday, she developed a fever, sore throat, and stomache ache. I asked pediatrician if Augmentin could cause a fever, and she said, though rare, antibiotics can sometimes do this. Just a thought for you! Good luck!!!