T_Mom

Dr. Kovacevic in Chicago was very helpful. www.webpediatrics.com (phone consults are possible) Dr. Beth Latimer, neurologist in Maryland has been very helpful to us.

There were so many great responses to a request earlier this week for doctors who have helped with PANDAS that I feel it may be helpful to start this topic in the forum. Please, if you have seen a doctor in your area who has been helpful, can you please post the state and name briefly, perhaps to provide a resource to parents along the way. I sure wish I had this at the beginning. Perhaps we can list the city/state, and name in the subject heading for ease of access. TMom

MomMD-- Your post brought tears to my eyes--so thankful for you. Please keep us updated, when you have time-- T.

Just to add--our experience during the worst episode our d had a very sudden and obvious reaction and literally an about -face in symptoms 10 days after the steroid burst had ended. Dr K had told us that in an older child it could take up to a few weeks to see a change. He also said that if it was PANDAS the change in behavior would be sudden and obvious, which it clearly was. Her truly amazing recovery was like a total break-through at the time--she was not 100%, but she literally "woke up" from OCD. This was 10 days after the steroid burst and after 5 days of full-strength Amoxicillan.

Asaxon, I want to add, that the use of prednisone should be done only under a doctor's guidance, as it can have serious side effects. We have found neurologists who have experience treating children with more severe issues (tourettes, tics, etc.) to be comfortable with the use of prednisone. It is not something to play around with--there can be serious reactions. I would only ever do this under a doctors guidance (and someone who is close to you, in case your child has a bad reaction.) Dr K can advise re: dosage, but I would not try it without a doctor close by who is going to follow you. I would call every neurologist and immunologist in the area to see if anyone is familiar with PANDAS issues--and if you have to work with a doctor who is not familiar with PANDAS ask them to call Dr K or Dr Jim Leckman (Yale) to consult re: the use of prednisone. Take care, TMom

Sam, We will be thinking of you and your dear child this Thurs/Fri. and waiting to hear how things are going next week-- All the best, TMom

Asaxon, I want to add, that the use of prednisone should be done only under a doctor's guidance, as it can have serious side effects. We have found neurologists who have experience treating children with more severe issues (tourettes, tics, etc.) to be knowledgeable re: the use of prednisone. It is not something to play around with--there can be serious reactions. I would only ever do this under a doctors guidance (and someone who is close to you, in case your child has a bad reaction.) Dr K can advise re: dosage, but I would not try it without a doctor close by who is going to follow you. I would call every neurologist and immunologist in the area to see if anyone is familiar with PANDAS issues-- If you have to work with a doctor who is not familiar with PANDAS ask them to call Dr K or Dr Jim Leckman (Yale) to consult re: the use of prednisone. Asaxon-- You might consider a phone consult with Dr K. www.webpediatrics.com It was WELL worth the money for us, he has been a great help and can advise you as to the prednisone burst. He was the one that advised us to try it in the first place. We had a local neurologist follow Dr K's protocol over a year ago, and Dr K is extremely helpful both on the phone and email. All the best to you-- I hope things calm down for your child --

Thanks T. Mom.... Is 250mg considered full dose for an almost 8 yr old weighing 65 or so lbs? I thought it was but maybe not? Thanks! Susan Hi Susan, Maybe it is, I am sorry I don't know-- I know that my daughter was on the Z-pack, a 5 day prescription of Zithro that was more, when she weighed about 74 lbs. I would check with a pharmacist, to see what the standard dose is for strep for your daughter's weight perhaps? Has she had blood work done to ensure there is nothing else going on that could be triggering inflammation? (may be worth having her vit D levels checked--as these may contribute to neuropsych issues) I am so sorry you are going through this-- T.

Hi Susan, is it worth trying full strength antibiotics (especially since with the fear/hearing voices issue) to try to quell possible inflammation? Perhaps the 250mg a day is a therapeutic dose for your ds weight?--I do not know. It sounds so hard right now for her--I am so sorry.

The website is incredible. I suggest we all send Diana on a vacation! Diana, you have helped so many of us...through some very difficult times, thank you-- T.

Has anyone seen an increase in OCD, moods, raging, etc. with chlorine/swimming exposure? I understand the tic connection, but wondering about an OCD/inflammation connection--hmmm...

Hi Ellen, I am so sorry for your difficult time. Some of us, with children who had PANDAS related sudden-onset severe OCD exacerbations/and tics, have seen a significant reduction of symptoms in our children when given full-dose antibiotics for a month or more. (most seem to have used Amoxicillan or Azithromycin.) I understand your son is now on 250mg of Zithro twice a week as a preventative effort--If you have never tried a longer time period of full-strength, in my opinion it may be worth trying, we have found it to be highly effective. Best, TMom

Alex--If you are reading this, I just read your post from June 22 : "In our meeting with Dr. Geller, he prescribed the same thing, a 'robust' dose of Augmentin for a long time. I am going to make a unique post about the consultation, but to make a long story short, Dr. Geller stated that anti-bioitcs have anti-inflammatory and immune modulating effects, not just anti-bacterial effectiveness. This confirmed to me what I have noticed on here a great deal, kids with PANDAS improve on anti-biotics even when they aren't fighting an active case of strep. Anit-biotic therapy is an emerging field in the treatment of many auto-immunde disorders even though they are not sure exactly why it works. We have a friend who has lupus that goes into remission when on antiibiotics, and reemerges when she goes off. So, anti-biotics are most certainly a treatment for PANDAS, not just for strep." Was it your impression that Dr Geller was saying that ALL antibiotics are anti-inflammatory and immune modulating? Thanks--

Thanks EAMom, Your link led me to one of the original-study reports addressing Amoxicillan dosing. http://pediatrics.aappublications.org/cgi/...stract/103/1/47 I just wonder if All antibiotics have the same properties of (what appears to be) anti-inflammation and immune modulating effects which we apparently are seeing with Amoxicillan and Azithromycin. I am afraid to take my daughter off the full-strength Amoxicillan, and she has had no bad effects yet -- I am anxious to see the "Saving Sammy" book and their experience with strong antibiotics over the course of an extended time.

We started using antibiotics in a preventative manner (half-strength) as described in the research--after an exacerbation. We were using them initially ONLY in an effort to keep "strep" or other illnesses away. However, when my d was not "clearing" after one exacerbation, we "discovered" that with a longer period of full-strength antibiotics she improved week to week (gradual improvement, with slow but noticeable reduction of OCD and tics.) This was a surprise. It took 3 months to get her back to 95% herself. We were using Amoxicillan, and continue to do so (6 months now.) ** Does anyone know if ALL antibiotics have anti-inflammatory/immune modulating properties? We were told by one doctor that Amoxicillan does, and it appears that Zithromycin must as well--others? ALso, this past post by EAMom raises the issue of giving an anti-inflammatory/immune modulating antibiotic appropriately, so the effects are constant of course-- As far as I can tell, Augmentin's half-life isn't much longer. The amoxcillin portion is 1.3 hours and the clavulonic acid(clav. acid makes the amoxcillin more effective) portion is 1.0 hour. (Compared to Azith. which has a 1/2 life of 68 hours.) This link http://books.google.com/books?id=DO-7q2Vzz...num=4#PPA202,M1 (see the top of page 202, chart) shows that with amoxicillin, there is pretty much no drug left in the blood stream after 8 hours. (So the same would hold true for Augmentin.) In addition I haven't been able to find any literature that actually states that Augmentin (or amoxcillin) is an effective strep prophylaxis given 1x daily. Since it's half-life isn't much longer that Pennicillin's...it makes me think that it really needs to be given 2x daily to effectively prevent strep. Does anyone have more information on this?

LMama, It is late so that may well be affecting my memory! ...but I think there may be a connection between augmentin and amoxicillan--best check on that before trying amoxicillan, just to be sure! All the best, and I am turning in now-- T:)

We have used Amoxicillan with good results--though some have used it "for a while" and then had to go to Zithromax (stronger.) I suspect we will as well at some point. Augmentin is also used by some...and others. It may help to follow the course of some of the children's illnesses by reading the posts that parents have made over time. (I have found this very helpful.) Just click on the person's name, and then "Options" then "Find Member's Posts" and all posts show up-- In our case we gave a 10 day dose of Amoxicillan for colds accompanied by OCD/tics 4 times within 6 months. Each time she would get ill and accompanying OCD symptoms returned soon after stopping the Amox. Finally last January we tried a month of it--and the response was very positive, so have continued, full strength since then...My daughter was very crippled by sudden onset OCD though--I hope your son may "clear" with a regular 10 day course of therapeutic dose antibiotics the first time. Blessings-- T.

LMama, Welcome, I am sorry you are dealing with this as well. It sounds like you are on the right track--I would do just what you are doing. Shaesmom's suggestion of the 72 hour culture for strep is a good one, also the bloodwork, and regardless of the results if I were you I would do just what you said--try a course of antibiotics to see if they make a difference. If they do then you can decide what is next. With the antibiotics I would also do probiotics (we use drinks such as "good belly"), vitamin C, and D, and omegas. On Dr K.s website he has a note there that in his experience, if PANDAS is caught early enough antibiotics alone may "cure" the child. www.webpediatrics.com Nevertheless, if antibiotics DO have an effect than that is a hopeful sign that there is "treatment" for the symptoms. Good job being on top of this so early in the course of the symptoms-- Best, T.Mom

Susan, That is wonderful news--I am very, very happy for you. MomMD, I have to ask about the "snake-like break dancing" moves...At my daughter's worst exacerbation last year, as she was sinking into OCD-non-function, she would do break-dancing moves periodically. The break dancing has continued through this past year (though it seems more in control), but it is as if she just suddenly couldn't help dancing. Even her teacher commented on it more than once, re: my daughter's "odd little dance moves" which she would suddenly do in class. I realize this may sound odd but I have wondered if the basal ganglia being inflamed might trigger some reaction in the kids. Susan, again, wonderful news that you are seeing such good turn-around with the antibiotics. Wonderful. T.

double post--sorry

You know--I am thinking we should all agree to just change the name of "PANDAS" to get away from the stigma it seems to stir in some... How about "Brain inflammation that led to NEUROPSYCH issues coupled with tics at times...manifests with typical basal-ganglia involvement which may (or may not) include handwriting issues, bowel and urinary incontinence, OCD (sometimes crippling), sometimes anorexia, sensory sensitivity issues, and appears to abate with antibiotics, IVIG, or PEX." Do you guys think that is too long!!!

Greeneyes, thank you for keeping us updated-- It is good to hear that you are already seeing some improvements--we will continue to hope for more as the days progress-- All the best to you all-- TMom

Susan, We have used the "Good Belly" probiotic drinks (Whole Foods carries these) both in a large container and in daily "shots". It is non-dairy and fruit based (watermelon/cranberry/mango types) probiotic, (strong.) I try to have my d drink it at two meals at least during the day, each time at least one serving or one "shot", worked well for us thus far.

The person who mentioned it to us said that they had learned this as a side issue essentially--so it was not on the research radar. What I really want to know is if anyone is doing research using full strength antibiotics to treat OCD/tics that stem from illness-related inflammation... THAT has the potential to apparently be very helpful to have some information on--*( Any medical interns reading this forum might wish to pursue that avenue!) Please! TMom:)

Hi Lacy, My daughter's blood test actually did indicate the presence of antibodies--prior to testing Dr Cunningham had noted it probably there may not be dramatic results as she was doing very well, on antibiotics and had been recently given a steroid burst. We did not expect to see anything, but it did show presence of antibodies and will serve as a baseline in case of another exacerbation. I explained the situation to our pediatrician and they were willing to do the blood draw in the office.