Kayanne

I think of steroids as a first line treatment. If your daughter still has symptoms of PANDAS, then steroids are anti-inflammatory and immuno-suppressant. I don't consider the 5 day trial to be a treatment. I think a month-long taper is more therapeutic. However, I think that if the autoimmunity has been entrenched for too long, then a steroid may not be enough to put PANDAS in remission. However, your daughter may still get some improvement from it. Honestly, I think the results of steroids are hit or miss. I think if it is very early in the PANDAS exacerbation, and there are no other complicating issues (other infections or TS) then there is a good chance that a pred taper can bring on remission. If it's not early, you may see some relief that sticks or your child may backslide when stopping the prednisone...that is when IMHO, the second line treatments should be considered (IVIG or PEX). I'm not sure where IV steroids fall...first line or second line treaments? Of course, this is all just my opinions based on my daughter's PANDAS treatment. The decision to try steroids is really a personal one that a family makes with the guidance of a doctor. Like every treatment, the risks vs. benefits need to be considered. I'm sorry I can't really give more than that. I think for me, personally, I judge the severity of my daughter's PANDAS symptoms based on her school performance and emotional reactions. I don't want to see her school work suffer, and I don't want to see her unhappy.

I think I would like to add the details of my daughter's case just so that others can compare. My daughter was neuro-typical (dcmom I love that term!). She was in the last quarter of a very successful year of kindergarten. She had a bad case of strep throat, that took 4 rounds of antibiotics to clear. Her PANDAS symptoms started approximately soon after stopping the 2nd round of antibiotics. Her test results were normal, and as expected she had elevated strep titers. Within three months of her onset of symptoms, we were in front of a PANDAS doctor. My daughter was treated with a prophylaxis (100mg azith daily) and a month long taper of prednisone. By the end of that month she was 97% back to us, and over the next 2 1/2 months we saw any (very minor) symptoms go away. In August 2009, we switched her to pen vk as a prophylaxis. She had a very successful year in First grade, but in the spring of 2010 strep hit my house again. Despite testing negative on the rapids and culture, her PANDAS symptoms started to come back. Her ped put her on full strength of omnicef, within a week her PANDAS doctor continued the antibiotic, and put her on another monthly taper. By the end of the the third week, she was completely back to us again. For various reasons, we were not able to follow up with her PANDAS doctor until August so she stayed on full-strength omnicef until then. We cut the dose in half, and she has continued to do very well. In the very beginning of our journey, Lyme testing was suggested to us. We didn't pursue it because we have a very clear history of strep being the cause, and a family history of RF and anxiety (panic disorder and sub-clinical OCD). Certainly, if my daughter was still struggling, we would be turning over every rock. However, I also want to point out that I think our case is a minority. Not many kids get diagnosed so quickly, and that is why I think my daughter responded so well to prednisone. I don't think the autoimmunity was allowed to really get going...(but that is just my idea--obviously I'm not a doctor). So, I think for PANDAS families who are struggling, as long as you see a positive trend in improvements from immune therapies, then it could take upwards to a year to two years. The brain heals slowly. These are just my gut feelings based on what Dr. Cunningham has stated about how long it can take the cam score to drop. I still have not done any Lyme testing because my daughter is in total remission, so for us it does not apply. I also want to add that last summer we also did immune testing, and all was normal. So, I hope my input as to why I don't believe my daughter has Lyme...helps... I pray for our kids everyday!

Thank you for sharing your story, and I'm sorry that your family suffered for so long, and is still dealing with the effects of PANDAS. Can you tell me what has made you believe this? I'm just curious if a doctor has told you this. In my humble opinion, the jury is still really out on this. Also, ASO and Anti-Dnase titers, while indications of strep infection markers, are not the antibodies directly responsible for PANDAS. (I wasn't sure if that was what you were implying or not). Some things that you might consider trying all have to do with fighting inflammation: fish oil, a cleaner diet, motrin, prednisone, making sure all allergies are under control. Good luck.

dcmom, Thank you for your well thought out post. I agree completely.

Yes, I got through the first chapter, and started the second chapter. It's interesting. Thanks for the heads up on it.

I agree.

It's my opinion (obviously not worth much since I'm not a doctor) that a 5 day course of Omnicef is the reason my daughter got PANDAS. It is approved for 5 days of treatment. In 2009, it was the first thing my daughter was put on. Eight days later, she was back in the office and still testing positive. She was then put on 10 days of amox -- a step back in strength and can't reach the intra-cellular strep. When my pediatrician had heard that the Omnicef didn't take care of the strep, he said something along the lines of, "We've been seeing some treatment failures with this." I was dead set against ever trying Omnicef again, but it was offered to us a year later when she was on pen vk as a prophylaxis, all my other kids were positive for strep, she was negative even though her PANDAS symptoms were ramping up. I took the script because I was grateful for a different class of antibiotics from the penicillins, and this pediatrician told me about splitting it into 2 doses, and she was given it for 10 days -- 50mg more than the typical dose. We definitely saw improvements within a few days on that treatment, and the prednisone brought her back fully. I have come across different websites that say different things about it's duration and dosing (once a day or twice a day), most of the time, if strep is mentioned, they suggest a 5-10 day course. But I think for PANDAS kids, 5 days is just not going to cut it.

I think I may have asked this before...but I don't remember if it was you or if I had gotten a response. When your son was put on Omnicef in March, was it a 5 day dose or a 10 day dose? Thank you.

I'm thinking it's pretty much the same thing we have been saying on this board for a while. Pen in a dish kills strep, but when you consider an actual infection in the body...it's a different set of circumstances. I also think there is a difference between resistance and treatment failure. And this poll really doesn't take that into account. I wonder if a child was prescribed 20 or 30 days of the same antibiotic, would it take care of the strep?

Both times my PANDAS daughter took prednisone, she had more anger/rages within the first week. When the dose was cut in half the second week, we saw steady improvement.

For very general purposes, I've started telling people that my daughter gets neurological complications from a strep infection.

Praying and crossing my fingers that everything stays good!

Yes, my son had hives with strep. He was about 15 mos old, and it was his only symptom. His pediatrician looked in his throat, said it looks a little red, it's probably not strep..let's test it anyway. It was positive.

Twice, I've tried to go back into someone's history, and I was taken to white page with an error message.

I wonder if a diagnosis of PANDAS for this girl would give the defense a medical reason to say weaning her off the meds was the right thing to do as per Murphy's finding? It is a sad, sad day when a parent cannot push to get their child well, and must follow the "established" treatment protocols.

(((HUGS)))

No. Strep hit my house in 2009. It was a bad strain, and it took several rounds of antibiotics for most of us in the house. My PANDAS daughter started to shift her behavior at the end of March/Beginning of April. It was not a "specific date and time" for us, but it was a real shift that took place within a few weeks.

You wrote that so perfectly!!!!

I'm going by memory, but I think it was nojo. I tried to pull up her content but for some reason I got an error. Can they culture for that type of staph?

I'm so very very happy to read this!!!

Testing for myco: http://www.nlm.nih.gov/medlineplus/ency/article/000082.htm Although, I am pretty sure that most doctors just listen to the lungs, and if they hear congestion in the lower part, then they would prescribe. If they just hear upper congestion, most likely they are going to tell you it's viral or not severe enough to warrant an antibiotic. If this turns out to be the case, get a very clear explanation as to how long they expect the cough to last, and when you should bring her back if it doesn't clear. It is not obvious that the 100mg isn't preventing strep. I'm pretty sure that's why your PANDAS doc prescribed it. At least that is why it was prescribed at that dose for my daughter. If your daughter does have myco p, then it is a possibility that the 100mg daily is not enough to prevent that, although, I don't really know...myco p is a slow growing bacteria...so that dose could prevent it -- I don't know, but certainly your pediatrician will have a better clue than any of us on this board who are not doctors. However, if this is viral, then the zithromax isn't going to be effective at all. My daughter currently takes 150mg of Omnicef to prevent strep. She has been coughing a lot the last few days--all of us have colds. I've been giving her Mucinex, Airborne and running the humidifier at night. Take your daughter to the pediatrican's and treat it as a regular sick visit. You just need to tell the pediatricians that you suspect PANDAS, she is being treated by a neurologist, and given a prophylaxis to prevent strep. They will understand at least that much. Your local pediatrician should also have a good idea of what antibiotics are effective for the area in regards to strep and mycoplasma. If they prescribe another antibiotic, ask them if you should stop the zith temporarily or keep giving it. If they are critical of the whole PANDAS thing, just shut the conversation down, by insisting your daughter be evaluated now for her current illness--tell them that is why you see a specialist for PANDAS. Just try your best to not get into that conversation with them. You are not doing anything wrong or sneaky by giving your daughter an antibiotic that was legally prescribed by another doctor. What if you had a teenager who was put on an antibiotic for their acne by a dermatologist? You would just matter-of-factly mention it as a current medication during the intake interview for that appointment.

...and I got tears in my eyes as I read it! I'm hoping and praying with you, and all of our PANDAS families!!

Wow!! I'm keeping you guys in my prayers ((hugs))!

Generally speaking -- I've heard that Levaquin is a really good antibiotic for mycoplasma too. But that is all I've heard. I don't recall reading about anyone using it here on the ACN boards. I do think there may be more side effects, so of course your should google it, and read all you can. I just wanted to throw that out there. Good luck.

Hi Newbie, I am not OCD but my boyfriend is and your behaviors sound very much like his. I have been with my boyfriend for over a year and it has gotten easier. At first it was really difficult because I did not understand his bizare rituals at all and it kind of freaked me out. Like if I told him that I will be home at 6:00 and I am late, (even 10 minutes) he would freak out. Not with anger mind you but with needless anxiety. He imagines that I am in the hopsital or that I have been abducted or something like that. He also freaks out about my ex-husband and says things like " do you wish that you were still with him?". He knows that my Ex was abusive and that I stopped loving him 11 years ago. He is also a germaphobe....yikes!!! I have been doing some research on OCD and I have come to understand that it is an actual illness and after gaining some knowledge on the subject I feel much compassion for him, (and you too)!!! I don't know what your girlfriends past was like but if she truly loves you then she will understand that you can't help the way you are and that if you could turn off the voices of anxiety in your head then you would do it in a New York minute. I am very independent and used to doing my own thing and not having to answer to anyone and as a non OCD girl, I would interpret his behaviors as some sort of macho control that he needed to have over me which is not the case at all. I try my best to comfort him. love him and understand him even though I am baffled at times by the whole OCD thing. The best thing that you can do for one another is to reassure each other and see each other through the tough times, when the OCD monster rears its ugly head. If you really love each other then with a little patience and time it will all work out. Hope that this helps........my best. I just wanted to say God Bless You for learning about your boyfriend's OCD and for subsequently gaining compassion!!! I look at the world completely differently since my daughter got OCD from PANDAS. Now that I am more aware and knowledgeable of these neuro differences in people, it is much easier to accept and help someone--rather than to "assume" every one is starting at the same point.