Kayanne

I'm sorry the appointment was a disappointment...We saw an ID specialist at CHOP, and I left in tears. He told us because this was her first episode, he couldn't really say it was PANDAS because she yet has to show the waxing and waning pattern...."but if she has another episode then, I would definately say it was PANDAS"....very generous, don't you think? It sounds as if your pediatrican has been very helpful...I hope that continues...If he/she is willing to just follow the protocol for prophalactic antibiotics for RF or SC, then your child should be protected. Did the steroid bring your child back to 100%? We had my dd6 on prednisone for six weeks, and she is fully recovered....just started her first day of school with no problems! Have you been in contact with Diana Pohlman? She has a list of helpful doctors...you can contact her through www.pandasnetwork.org Also, if you are accessable to the DC area, then maybe you could consider an appointment with Dr. Beth Latimer. I also know that Dr. Latimer is willing to talk to other doctors...in case your pediatrican has questions....it just may take some time because of the busy schedule of doctors...ya know, phone tag.

....that is a very good thought. I guess it is just one more thing that we parents need to factor in our decisions on what type of treatment to do....

I'm really glad your son is doing better! I would try to push for a prophalactic antibiotic...as asaxon posted in this thread, PANDAS is considered to be very similar to Sydenham Chorea and RF---they call for prophalactics. It really seems as if your pediatrician is being very helpful if the ID specialist won't do that then, I would ask your pediatrician.

We saw a ped. rhumy, who's explaination was that these kids were just a subset of tourettes....based on Kaplan and Singer's work. He told my daughter's pediatrician that he was "open" to the PANDAS idea, but he told us that he didn't think there was enough proof to claim that it was autoimmune----ironiclly we saw him the same day the Coulmbia study was released (Aug 11th), but I didn't hear of it until the next day. His son has TS, and he was somwhat suprised that my dd recovered so well with prednisone....but he said that some kids with Tourettes don't get worse on steroids.

Colleen, Thank you for all of the great info...I cannot thank everyone on this forum enough. I think we are at a point now to try to back down from the azith...I am crossing my fingers hoping like ###### that all of the strep has cleared from her body, but I will not hesitate to go back to azith if needed. I am concerned about missed doses, but I would never do the injection. I'm not really sure what antibiotic Dr. Latimer is going to recommend, however in a very brief email she echoed my sentiments that I would like to put dd6 on a more benign antibiotic. We have a phone consult scheduled soon. I am concerned because she had a "side effects rash" from amoxicillin...does that mean she can't use any penicillian? She was taking it for a strep throat, so Dr. Latimer felt that maybe her pediatrician misdiagnosed it and it was really a strep rash....when that rash happened, we were told to continue taking the amoxicillian....and she didn't really have any other issuses. I've been trying to read about anibiotics in general...can anyone recommend a website that has good info on them?

My PANDAS daughter has always seemed healthly prior to her episode this spring.

Good luck...keep us posted

I asked him what the prophalactic protocol for rhumatic fever would be, and he said monthy penicillian injections. He said that in a dish, strep has never shown a resistance to penicillian. It is a narrow spectrum antibiotic, and he specifically used the word "benign" to describe it. Also, it has a proven track record because it has been used for a long time. My DD6 is taking 100 mg of azith, and I have been worried about the effect this will have on her flora. We do probiotics but I still worry. I know that my uncle had RF when he was 10 yrs old, and he took penicillin for twenty years after that. When I asked him how long he took them for, he didn't mention any side effects of being on it for so long.

We just went to a pediatric rhumatologist on August 11th, and my daughter is/was symptom free at the time... We only went because our daughter's pediatrician had recommended that we go that route because he said that rhumatologists treat autoimmune diseases. He called around and did find resistance to PANDAS, so when he heard this rhumy was "open to PANDAS" he recommeded we go there. Overall, the appointment was a bit of a disappointment....I was hoping he would order the immunological blood work for us...no go. I was able to pick his brain about prophalctic antibiotics, and I left there feeling pretty sure that I want to stop the azith and put her on penicillian. The only positive that came out of the appointment was that he was suprised that my daughter recovered so well on the prednisone, and he said that he would call her pediatrician and tell him that he saw no reason why we could not use steriods occasionally as a treatment option.

It is so hard to determine how much of their behavior is now learned from the anxiety that PANDAS creates or a direct result of residual brain inflammaion. I agree that when a child is having a PANDAS episode, the traditional methods of dealing with separation anxiety are not helpful, and may even be detrimental. I don't think my daughter had separation anxiety...she did cry in school, and was not able to tell any of us why...we thought perhaps she did miss us. Once we "got it" and stopped being hard on her she seemed much happier at home, but she still cried in school. However leaving us to walk into school was never an issue. I know that for a lot of chldren, separation anxiety is one of the first behaviors that appear in a PANDAS episode...and in our case the first behaviors that we saw (emotional lability, telling on herself, and inability to make a decision, and potty issues) were the last to stop....it's like she healed in reverse. She had a lot of improvemnt, however my daughter's major "overnight" improvement from the steroids didn't happen until we were nearing the end of the fourth week...we only had three doses left and had to use the refill of prednisone intensol. She was exponentionally improving after that....and we didn't want to lose the benifit of the past month, so we asked to extend the steriod...Dr. Latimer allowed two more weeks, and she was about 98% improved by the end....she still continued to improve even after she stopped taking the prednisone (July 18)...now I think she is essentially 100% improved. Of course I think that using pedia-pred (prednisolone) was not as effective as the prednisone intensol. Everything I read says that prednisolone and prednisone are equally effective so I am probably barking up the wrong tree....but in the future, I'll wait a day or two for the pharmacy to order the correct medication.

I started the process of trying to get an IEP for my daughter. I have never heard of a 504...I think it would be more useful than and IEP in our case. Thanks for posting this...I'm going to look into it.

In almost every PANDAS story that I have read on this fourm, the child has some bathroom issue...for us it was just crying and not getting off in a timely manner...she couldn't even tell us what had her so upset. Even now, her only lingering issue is the bathroom...she is so reluctant to use it...she cries and we have to tell her that she must go. Now that she has begun to tell us a little about what she was thinking during her episode, I tried to get her to explain why she was so reluctant to go, and she doesn't even know why. She just says, "I don't know why I don't want to go potty, I just don't like it."

My daughter was on prednisone for six weeks. She finished on July 18th, and so far no slip back. Dr. Latimer spoke as if this was going to be permanant unless she gets strep again, or if she reacts to viruses or strep in the environment--which we are not sure yet...crossing our fingers, though! Did you already do the Cunningham blood test? How long does it take for the results? I can't speak about the cough medicine...when my kids are sick, I use it, but I haven't had a need for it since the PANDAS thing started here. Perhaps some motrin might help a little with the brain inflammation while you are waiting to start the prednisone....I don't think they can be combined so be careful. Dr. Latimer felt that if my DD made a full recovery on the steroid, then we wouldn't be looking at IVIG or Pex, so I think that these procedures are not always necessary...at least the is my hope in our case. Good Luck, Karen

So sorry that you are going through this too! What I think is key in your post is that your daughter had improvement with prednisone and antibiotics...PANDAS normally abates when you use those medications. You are not crazy, and I completly understand "second guessing" yourself. My DD also seemed mild, we didn't see an overnight appearance of her behaviors, we have a family history of overall anxiety/OCD, and some of her symptoms were not new behaviors, so if she didn't have a clear history of repeated strep infection, we would be treating her for anxiety and OCD. I really think in the long run, this is going be considered a spectrum disorder because of the wide varying degrees of severity and symptoms that PANDAS can cause. I see that you have a phone consult with Dr. Latimer. She is treating my daughter right now. Luckily we only live 3 hours from her...My daughter has been brought back to us by a six week use of Prednisone....all thanks to Diana Polhman's push for us to see Dr. Latimer. If you have not touched base with Diana yet, go to her website, and give her your contact info: www.pandasnetwork.org Best of luck ~Karen

Michele, did you end up seeing Dr. Gilbert in Cincinnati? My son has been ticcing for 1.5 years (started after a high fever that lasted several days; the STREP test given by our doc came back negative) and we still have no diagnosis, no leads. We are lost. We are in Michigan and I wonder if a trip to Cincinnati to see Dr. Gilbert would be worthwhile. Any help would be greatly appreciated. Beth I believe that in the following thread, Dr. Gilbert is being discussed...I also think that some of the posts were deleted...you could pm those forum members directly that have experience with him. http://www.latitudes.org/forums/index.php?showtopic=5087

I'm not sure that they even know how/why IVIG works for PANDAS, but I do belive that Buster has commented on this in his posts. Which hospital in NJ will you be having the procedure done?

I totally sympathize with you. I feel like every free ounce of my energy goes into reading this forum and the other research on PANDAS...I worry that I am going to miss something critical because I don't have a science/medical background and there is SO much that I just don't understand...I feel like I owe it to my daughter to know everything that I possibly can about this! My daughter is doing great right now, but I still don't have a long-term approach pegged down...I worry about the other aspects of this disorder....symptom recurrance with viruses...and vaccines...and my other 3 kids....

For our DD6, while she was in the midst of her episode, I don't believe that the CBT appointments were helpful. Now that she is not currently in an episode, she enjoys going, and does try to use some of the stratgies that she is learning. The therapist agreed that she was not doing well, but felt that it would be helpful for another person to be able to assess how bad she was, and how she improved. One of our goals while she was in-PANDAS was just to make her smile and laugh a bit each day...frankly I think she just parked herself in front of the TV--it made her happy...so I can really understand about the TV...and yes she LOVES Spongebob!

THANK YOU SO MUCH FOR POSTING THIS! I was at a Ped. Rhumatologist's on Tuedsay, and his son has TS and he was trying to tell us that PANDAS is just a subgroup of TS...He mentioned Kaplan and Singer. However, he was mildly suprised that DD improved using steroids, and he felt that occasional use of them would be okay.

I'm very suspicious of this study...only 2 visits and a duration of 8 weeks? What exactly are they trying to acertain in such a small window of time?

I'm pretty sure Kayanne's dd (if I remember correctly) is small (40 pounds?)...so it looks Dr. Latimer did a higher dose 40mg/day (1 mg/lb, not kg...so it's almost 2 mg/kg, roughly) for week 1, then 0.5mg/lb/day for a week, then 0.25mg/lb/day for a week, then 0.12 mg/lb/day for a week... Maybe someone else can double check my math? Sorry I didn't respond to this thread sooner...we were away for the weekend Yes my dd wa 43 lbs at the time Dr. Latimer prescribed the month of prednisone. We saw baby steps of improvement up until there were only 3 doses left (we switched from pedia-pred to prednisone intensol), and then she seemed to improve A LOT! She was so close to her old self that we asked to extend the prednisone....she took it for six weeks...the last three of those weeks she was only receiving 5mg once a day. Even after she stopped the prednisone on July 18th, she was still improving....we now believe that she is 100% back to us. Good luck...I hope it works

I would have to respectfully disagree with Dr. K's categorical statement that "corticosteroids have not been (and should not be) used as a treatment in PANDAS". PANDAS researchers generally believe that PANDAS is similar to Sydenham's Chorea (SC) in how the diseases operate; that is, they are both some kind of an autoimmune reaction triggered by strep that reacts with the nerve cells of a child's basal ganglia. And there has been a half-century of practice and research on the use of corticosteroids to treat SC. A typical protocol is up to 4 weeks of 2mg/kg/day prednisone, and then taper down. If SC is treated with prednisone right away, the symptoms seem to respond fast (days); when SC is untreated for a time, then it can take longer for the symptoms to respond (weeks). The case studies I have read conclude that prednisone bursts (of varying lengths, at least up to a month) are safe and effective for treatment of SC. I agree with you...I googled "Tourette's Syndrome and Prednisone" and I came up with this artcle published in 1992: http://www.ncbi.nlm.nih.gov/pubmed/19630633 Anyway, these cases sure seem like PANDAS to me...I only read the summary We saw a pediatric rhumatologist on Tuesday that wasn't very helpful; however he did say that he saw no reason why we couldn't use prednisone as an occasional treatment if her symptoms flare up...

Do you know what other immune boosters would be? I was looking at Monolaurin today. It says it's an anti-microbial agent to protect the immune system. Susan No, I don't know...but this is the website for the store that we go to...you may be able to contact them with your question. http://www.naturesgardenonline.com/retaile...QU61NERL9MTECUF

When my husband went to the Health food store to get some supplements that were recommended by a ped. psych.--the workers there told him to avoid immune boosters if she has an autoimmune disease.... Of course when you consider it was not a doctor who advised this....we just filed it away in our brains...not really sure if we believe it or not...we really haven't looked into it much...

I completely agree with you....we used it for six weeks...and the last four weeks it was only 5mg daily...DD6 is almost completely recovered...just some really minor issues now... ~Karen