T_Mom

Yes, my two daughters have tics which morph into different presentations during exacerbations.

Hi Laure, I am so sorry this is up and down. I can share that we had similar experiences, and I finally have come to the conclusion that I need to step back and look at weekly trends rather then the day to day (which can drive one nuts as it can be so variable.) In our experience, it took about 3 to 4 weeks after the steroids to see some leveling--the ups and downs lessened. May I ask you -- Did you say that Augmentin is said to be a problem if it is Lyme? Could that be right? Do you know anything else about that issue or can you send me any info. For our younger d this could be important--thank you.

EAMom--What a nice little case report, thanks for sharing it. Funny that the doc never says what the heck they did for the guy?!? ... Here a doctor apparently recognizes Ps in a patient, but then apparently does not do anything to treat it, though he seems to say other doctors should be aware of it!

Mati's Mom--I am so, so sorry. What a 24 hours you have been through--husband in the hospital, and children in need on all sides. I am so sorry--and hope the healing of your husband's leg goes smoothly and easily. Tantrums, I hope your son gets a really good night of sleep--you all deserve it.

Hi John, I certainly wish you well as you explore the Ps possibilities. Dr L. may be very interested in the results of the scope that was done, which indicated swelling in his airway valves. Have you had the Cunningham research blood draw done? It may provide additional clues and you could have those results to take with you to see Dr L. You may want to get those done--

I just wanted to say I am sorry your son is going through this-- I wish I had something to offer. I know switching antibiotics has worked for some. I would be curious to know what someone like Tanya Murphy or Nicolaides would tell you at this point. Longer? Hold steady for a month and see what happens? I wish I knew.

Hi and welcome. I am glad you found the forum, though sorry you had to--If they found strep are they treating it, right? At the top of the Pandas page is a "helpful threads" site which has FAQs, a flowchart for what most of us have found effective, etc. I think you may find these useful if you have not seen them yet-- There are a number of websites with similar info. www.pandasnetwork.org is one I have found to be very useful. In our experience, antibiotics and steroids gave relief. I hope you are able to help your children as quickly as possible.

We have all been right where you are--trying to decide what is next. Our course of treatment has followed the line of thinking of EAMom and DCMom in that we have used antibiotics full strength long-term, and if I had it to do over again I would not have tried to back it off! If it is working, continue. --that has been our operating mode. If you need something more, you will know it when the time comes. Healing takes time.

Praying for Chris and all tonight--

Worth investigating DCMom! Go for it and let us all know his perspective.

Great find! I just "searched" on the Amazon link and searched starting with the chapter on Pandas of the text. There is a good section of the chapter there for free. Just reading those few pages from this book makes me think it could be very helpful for us all to use with schools, etc. I am curious about one thing I read so far...On p. 93 the author states, "...immune response genes on chromosone 6..." Can we test for these for our kids? He makes the case, it seems to me, that Pandas shows up only in kids whose genetic makeup is such that they are vulnerable...(we all know that by now!) Sure wish I had this chapter two years ago though! I just ordered a copy.

Help--I need some feedback here. I know that for us the name brand Augmentin seemed to be more effective then generic Augmentin at lower doses. We are now on to Azithromycin and just paid a huge amount for a few name brand...to see if they will move us to improved state over the generic (on 500 right now.) Has anyone seen a difference in generic vs. name brand Azithromax/Azithromycin or when using Amoxicillan? Thanks--

I agree Meg'sMom--We don't fully know just what effect the abx are having--as in the research I posted above, they were looking at the effects of abx, most clearly not necessarily if it was "clearing an infection": "...After only 24 to 48 hours of treatment, they have a dramatic reduction in OC symptoms and tics. To date, we have observed this phenomenon in at least 5 children, each of whom relapsed when the amoxicillin was stopped. These observations raise a number of questions, including whether or not amoxicillin has a direct central nervous system (CNS) effect or an indirect effect through perturbations of the immune system (e.g., cytokine shifts)."

It is interesting to note that in one of the more recent NIH studies this issue of "just what IS going on when we use antibiotics for PANDAS" was described-- http://clinicaltrials.gov/archive/NCT00001658/2008_03_03 Here is a quote from the most current revision (2008): "An increasing body of evidence suggests that Group A beta-Hemolytic Streptococcal throat infections (GABHS) may trigger the onset of obsessive-compulsive disorder (OCD) and/or tic disorder in certain vulnerable children via an autoimmune process. In this subgroup of children with childhood-onset OCD and tic disorders, preliminary data suggest some children have a rapid response to amoxicillin. After only 24 to 48 hours of treatment, they have a dramatic reduction in OC symptoms and tics. To date, we have observed this phenomenon in at least 5 children, each of whom relapsed when the amoxicillin was stopped. These observations raise a number of questions, including whether or not amoxicillin has a direct central nervous system (CNS) effect or an indirect effect through perturbations of the immune system (e.g., cytokine shifts)." "The purpose of this study is to determine if amoxicillin is an effective treatment for PANDAS, as well as examining possible mechanisms of this effect. We propose to do this with a 3-month double-blind placebo-controlled crossover trial of amoxicillin treatment with a randomized A-B-A-B design. Outcome measures will be blinded ratings of tic severity, standardized measures of psychopathology, and immunologic assays (such as type I and type II cytokine levels)."

TPotter--Your mail box is full, would you mind sending me the link to the article as well? Thanks!!!

KimW -- We can all understand your discouragement and how that feels, certainly, and I am sorry. (Have felt that acutely myself in the last few weeks--) We do the best we can with what we know NOW. I greatly value the wealth of experience and advice we have received from this online community, it has been a life saver (literally!) I am also wary of those who present themselves as having all the answers...as I know too well that my "OWN" answers are so experienced based, in OUR experience, that they may not truly match someone else. Let's face it, we work with the knowledge we know -- glean from each other "what worked for us" and hopefully solve the "what is wrong" question...or at least the "what can I try" one. Sudden onset OCD (perhaps with ticcing) has been a hallmark of PANDAS, and IF it is PANDAS many of us have been able to treat it--that is hopeful.

Great news -- Yey! What dose and what kind of antibiotics did you put her on and how long do you plan to continue? Again, great news--

Good for you that you are getting an IEP established -- should give you "the ear" of the staff in a helpful manner! (I hope!) What I would do with a preschool child is think about what you want from the "school" experience this year. For example, in our school (older grades) I asked the teachers last week to please complete a daily "OCD checklist" of behaviors (the checklist was generated by myself and the special ed. teacher given what we were seeing in behaviors specific to the child.) Are there any such "behaviors or symptoms" that you want to know about on a daily or weekly basis? How can the teachers be your eyes and ears during the day? Would it help you to have modifications of any type in the setting? For example, do you want your child to have more time for tasks? If they are going to qualify the child for an IEP then they may want "measurable goals"... many of us have opted for the 504 Plan model of support in schools, instead of an IEP. A 504 Plan provides adaptations to "even the playing field" for a child, but you do not have to get into the measurable goals and objectives. IF on the other hand, your child has obvious areas of need, where developmentally he is behind his age group peers, then you will want those measurable goals to track his progress developmentally and to ensure those skills get the attention they deserve. All the best to you as the year progresses.

Mustang Carole--nice to see you on the board! You are encouraging--tell us again how and what you did to handle this? When did your dear son get better and to what do you attribute it to? I need a little encouragement tonight--thanks.

SUPER news!!! Thanks for the GOOD news this evening-- May it continue!

Our d was being treated for suspected Pandas, due to the sudden onset OCD -- yes, very symptomatic with OCD issues, but she did not culture pos. nor were her blood titers pos. for strep. In her case, we believe it was either "not the first" time that she was exposed to strep, so a different illness was triggering the Pandas autoimmune reaction. There is no doubt that for our d the steroid bursts have been very positive. Be sure to read the "Helpful Threads" section at the top of the Pandas forum page -- especially the FAQs and the flowchart for following treatments which Buster posted. We found these very helpful. The reason I would continue antibiotics is that we believe it took time for our d to heal -- and many have found long term antibiotics to be very helpful (ie., Beth Maloney and her book, Saving Sammy, etc.)

Our experience (3 steroid bursts with older d in 2 year period) has been overall very positive. Her primary symptom was sudden onset OCD. She had mild face stretching tics, and a few other mild tic issues at times. OCD and tics were diminished with steroids. In our experience it was variable, ups and downs for a few days/weeks -- during and immediately after steroids until things "settled". I would definitely continue antibiotics prior to and after steroids--hope this helps.

Worried Dad-- I have not read the "Asleep" book but when the author was interviewed on NPR I called in and chatted with her re: our Pandas experience... She had heard of Pandas and mentioned that the historical records of those with encephalitis had noted that in children OCD was a symptom... Imagine the number of children that have been affected over time, with no one recognizing it--It is a tragedy.

I would take a hard copy (to hand the doctor) of a clear and brief chronological record of symptoms and illnesses that you have observed (in bullet form.) If you have pre and post handwriting or math examples, or grades to show the effect in school, may be helpful. Since you are out of state, during the appt. determine a step by step plan of what to do next and subsequently if necessary (prescriptions, etc.) Safe travels.

Nice find Buster! I hope you kicked that info. back to the "self limiting" chorea crowd--