dcmom

Debbie- I didn't read all of the replies, because I am in a hurry- but my dd also went a bit downhill upon weaning off the steroids. That only lasted about a week, and then she improved to almost where she was on steroids. I think others have had the same type of result, maybe what your daughter is going through is about the weaning off the steroid. I would either try to get a longer steroid dose, like Kayanne's daughter- or give it a few days (which I know is hard)... Eileen

Is it possible she is being exposed to strep at school? (thats a dumb question, of course there is...) During my daughter's recoveries, she would have blips in behavoir (3 or so days of worse pandas) when someone she was in contact with had strep.... I would keep the antibiotics steady for a few days, and see if this is a trend, or a short term blip. I can't give you any advice on the other meds...

Quick update. Julia continues to be well, meaning 100%. We saw Dr Latimer for a follow up today. She agreed, could see a big physical difference as well. We agreed to be really proactive with upping (or switching up) antibiotics and using steroids if any symptoms appear. We will keep our fingers crossed! ( As a side note: our insurance has denied the pex claim- even though it was pre approved. It is being appealed by the hospital for now. Anyone have experience with this type of thing...)

email Beth Maloney at SavingSammy.net, and also email Diana at pandasnetwork.org They both maintain lists of helpful doctors....

lovingmj- I would go straight to Dr Rosario Triffileti. He is very compassionate, and probably one of the most knowledgeable pandas docs there is. He just opened his own practice. Find his info on www.neurokidsr.us. I have seen him a couple times with my daughter and he is wonderful! He opened his own practice to specialize in pandas and other hard to diagnose issues. Call him today- he will help your child... Eileen

So I listened to Beth on Autism One radio show podcast today. I thought it was a good interview, and the interviewer was fairly knowledgeable about pandas, and thankfully interjected some additional info. We are post pex, and doing beautifully. I would say almost all of daughter's pandas behavoirs are gone (minus some "habits" that she has picked up from it). I am living in fear of how to keep her here. So while I think we jumpstarted her recovery with the pex, I think we still have a long journey. Sammy was on heavy duty antibiotics every day for four years. Beth was pretty insistent that this was their key. I am assuming he MUST have had an underlying infection that just took forever to get rid of. Right now dd is on zithromax, as long as she does well, we will continue with that. So here are some questions... Could long term treatment dose of zithromax also rid a child of an underlying infection (as well as augmentin)? Beth said Sammy was tested for "gut issues" with a blood test periodically. Would this be for cdif? Would this be advised for zithromax as well? I am concerned about long term abx (although not as much as a return of pandas). She said he took culturelle everyday for probiotics. What do you think of this? A capsule would be easy for me to break and mix in something. I have been all over the board on probiotics (I do give them everyday)- the culturelle just sounded easy to me. Thanks! Eileen (Will anyone be at Dr Latimer's on Thursday morning? We will, and Andrea told me it was a day full of pandas patients...)

nevergiveup- Is your daughter on antibiotics? If so, what type and dosage?

Just to clarify: the s. pneumococcal antibody titers do not measure one's ability to fight GABHS (strep throat bacteria). S pneumonia is the bacteria that causes pneumonia and some ear infections. There is no test that I am aware of to determine if one can mount a proper immunological response to GABHS.

Hi Deb c- Sorry you are going through this My daughter needed 30 days of daily zithromax to recover from her first episode. Ten days of antibiotics is just usually not enough. You need to find a doc willing to prescribe. We do prophylactic antibiotics, and I do feel that is very important for pandas kids- but regardless of what you decide about that you have to take care of what is going on now, and then decide what to do about the long term. Hopefully someone on the site will suggest someone else in your area who will prescribe a longer term of antibiotics to start. Frankly, I wouldn't even bother with the titers test. All that is really good for is to (not reliably) document a recent strep infection. You know she had that. Beyond this, I feel it can only be ammunition for non believing doctors. Its interesting your doc doesn't treat. My doc actually thinks the ocd is more debilitating and concerning than the tics.... Hang in there, and stay on the forum- you will get great advice here....

Clarie- I am so glad Carter is doing well. As I am sure you know, when any of our kids relapse, it shakes me to my core. It is great to know that the steroids worked. Maybe the pex reset his immune system so that this was more like his initial episode, and you caught it immediately. This does seem to be key. If only the doctors would screen for pandas, it would save so many heartaches... I do have my own plan to work on educating people in my area- I need to get myself together a bit before I can do that Please keep us posted... Do you mind saying what type of dose of zithromax carter is on? My dd is on 200mg/day right now- that is normal treatment dose for her size (of course would only be 10 day...) Are you still considering pursuing IVIG- or is that on the back burner for now since he is well? Thanks, keep the good news coming... Eileen

Hi Bronxmom 2- I hope all is going well? I just wanted to post. I am working on our post-pex plan, we see Dr L next week. Please offer your suggestions: absolutely no vaccines, ever again daily zithromax 200mg day for as long as Dr L will go for, then slowly weaning to 3x week with the option to double antibiotics at any uptick in behavior for a week or 10 days the option to do steroid burst immediately if uptick in behavior is bad or not helped by antibiotics any time she seems tired, or has an uptick in behavior or sep anxiety, I will keep her home from school a couple days (last 3 times she didn't want to go to school, i later found out someone had strep, and duh I was forcing her to go and be exposed) Proactive with dental work- see dentist for cleaning every 3 months (went yestarday) In 3 months, pursue follow-up cunningham test, and some further immunology testing, consider IVIG to boost her immune system (DH not on board with this- yet and of course we are having insurance issues now with pex...) get more aggressive with probiotics And of course, completely stress out any time she is moody or does anything pandas-like , and if I hear anyone is sick, and even if all is well and she is doing great...(this is non-negotiable as a pandas parent- right?) Thanks for your imput... Eileen

Just a quick update. My daughter Julia is two weeks post-plasma pheresis. I have to say she is doing really well. The first day or two home from the hospital, she was on edge. Since then, she has been doing really great! I have noticed major improvements in: ocd issues, mood issues, sleeping issues, academic issues, eating issues and sensory issues. She has always been slightly quirky - but I would have to say, she is closer to 100% than any time since pandas started. And, I have to say, the few issues that are left I am thinking are more of a learned behavoir or habit from pandas, rather than pandas itself. She is doing so well, on the other hand, I am a basket case. I really feel that the pex did it's job and removed the auto antibodies- but I am living in constant fear (especially with the news of so many kids relapsing) that anything can trigger another episode. It is so heartbreaking to see her zest for life, and to think that could be taken away again at any time Right now she is on 200mg zithromax per day. I hope I will be able to keep her there, with the opportunity to immediately up the dose if I see any uptick in symptoms. I see Dr L next week (will anyone be there on Tuesday?) to discuss post care. If it were totally up to me, I would probably pursue IVIG as another boost right now- but I don't think dh is on board with that. In retrospect, the pex was really no big deal. I mean it was stressful- but no more so than a week in a pandas exacerbation. If the pex had to be done every few years, to keep them well, it would be so worth it. (although my insurance just denied payment after pre approval...)

mama2alex- please post what you find out....

My non pandas daughter has has reactions to several antibiotics. I finally took her to an allergist. He mentioned that since her reaction (rash) started on the 8th day of treatment, it was probably more a side effect than a true anaphylactic type allergy. He wants to test her for a penicillin allergy (when the test comes back on the market). He felt we probably would in the future be able to treat with these abx, maybe needing an allergy med along with it. It may be worthwhile to see an allergist....

EAMom- This is where I am struggling. My dd is on, and was on before 200mg/day zith. This is treatment dose for her size (36lbs). But I wonder if that is enough. Saving Sammy's dose was equivalent to an adult's treatment dose for pneumonia- and he did it daily for years (and he was a child). The equivalent to that for my dd might be more like 400mg/day. But, that seems like too much. Is 200mg zith enough? Can I go higher- and for how long? Or should I consider augmentin? Her first episode, she did clear on 30 days of zithromax at this dose to about 99%. I guess that should lead me to believe this would work. But I totally agree: our investment in pex was too high (stress, $, etc) to fool around with doses that don't work. Why couldn't we have come into this (pandas) in a few years..... these docs, and parents will certainly know more then... Eileen

I agree- I will now be concerned with any type of sedation...

Hi all. DD is almost 2 weeks post-pex. I have a follow up with Dr L next week. Before I go, I would like to get a sense of what I feel we should do with the antibiotics. Right now I am totally confused. I really want to be as aggressive as possible for a while (a year?), so as not to negate what she went through with the pex (especially if there is some underlying infection). So, if your child is on Augmentin, please give me your experience and thoughts. How old is your child, what weight, what dose? What area of country do you live? What abx and dose were you on before augmentin? Have you done IVIG or PEX? How have your results been (esp compared to other treatments)? What is your long term plan? Any comments from your doctors? Thank you so much!!!!!!

Michael- In my opinion, the P for pediatric, in Pandas, is an artificially imposed requirement put on the disorder by researching doctors in order to make it possible for them to develop a study around it. Some parents, doctors, like to think this will end at puberty. It may be the case for some, but not all (my neurologist has a 21 yr old that he has treated since she was young- still has pandas). Unfortunately, no one really knows enough about this disorder to tell you anything concrete- and if they say they do- look for another doc. There is a study that follows 4 young men who had pex treatment- I think it is European? Someone on the forum has it and will hopefully attach it to this thread. If you feel your Tourettes may be linked to pandas, there is certainly no reason not to pursue that path. You will need to find an open minded doc to help you. would you consider high dose Augmentin for at least 60 days along with a steroid burst? Many/most seem to find some type of relief (if sometimes short lived) from this. You could also consider having your immune system tested... Good luck....

Debbie- Dr Latimer, Dr Triffileti and my ent Dr Feldman all felt we should do the T&A. DD has been on prophylactic zithromax twice per week since March. She did 10 days before and after of treatment dose zith, and then back down to prophylactic. It didn't do the job. She still had an episode a week after T&A. I kind of feel the cause could have been the anasthesia and/or physical stress of opening the BBB and letting the already existing bad antibodies back through. Steroids stopped that episode. That's why, I would ask the ent (and if he says no- discuss with latimer) the IV antibiotics. I would also have a prescription for a steroid burst ready, if needed. I would still do the T&A- just be prepared...

Debbie- My daughter had her tonsils out mid June. She was daily antibiotics 10 days before and 10 days after. Exactly one week post op, she had her second pandas episode. We had to do steroids to get relief, antibiotics alone didn't work. I am still glad we had it done, ENT thought upon extraction that the tonsils were infected. If you go forward, I would ask for IV antibiotics at time of surgery, and maybe have a prescription for a steroid pulse waiting- if needed. I am thinking it might have been the anasthesia causing a breech in the blood brain barrier- that caused the pandas this time....

Stefanie- I can see where you must be overwhelmed. I really don't have experience with this- but I have a couple thoughts: I think you could use some type of professional to guide you through this (setting priorities, techniques, moral support,etc). Is your son in school? Some thoughts would be: school psychologist or special ed teacher, child psychologist, occupational therapist. DD saw a child psychologist who specialized in anxiety during her worst ocd flare- in the end, I ended up going alone to some of the appts. It was a huge help for me to spend an hour discussing and brainstorming how to help dd. Good luck- you can do it! Keep us posted!

I would still do it. We did dd's test, a few days after she started recovering on her own from an episode. It was still high.

peglem- you are right, SC and RF are caused by group a strep. I know lots of parents feel they have found the answer, that their child has an immune deficiency, proved by missing pneumococcal antibodies, and this is their solution to pandas. I just think we need to be careful in stating this as fact, especially to new parents on the board. I haven't had dd's pneumococcal titers done (lab error), but plan to, but all other indicators for her are that she has a strong and normal immune system- so even if she fails these titers, I don't necessarily think it is a smoking gun. As with Dr Cunningham's test, these are all pieces to a puzzle, that of course no one has figured out yet. In my heart, I really believe the basic theory that it is a genetic succeptibilty, and some specific strains of strep, that triggers this thing. Where the immune deficiency fits in, I am not sure, maybe in the ability to get well, and stay that way? I think Sue Swedo used IVIG to retrain the auto antibodies. I believe no one knows exactly why/how this works, but it does for some/many. I don't think she was using IVIG to fix an immune deficiency. If one's body continues to make autoantibodies, then monthly IVIG would be the answer- but that may have nothing to do with an immune deficiency. Why kids need lots of antibiotics for so long? Maybe the strep for them has gone intracellular, or is some type of super strep (think chronic lyme's) and it just takes forever to get rid of it? Anyway, these are my thoughts. Please let me know if you think I am way off base...

SF Mom- I believe the Pneumococcal strep titers test is for antibodies to strep pneumonia, which is the bacteria that can cause pneumonia and ear infections, but not GABHS (strep throat). Theoretically one would have these antibodies if they were vaccinated or exposed to strep pneumonia. I think it is a bit of a jump to say that titer test, tests for one's ability to fight all strep. There is also a possibility that many healthy kids fail these titers (maybe the vaccine has a high failure rate? I don't believe this has been looked at). These titers may be part of a puzzle, but certainly not the whole picture. If you have more information to shed light on this, please post...

momtocole- I am so sorry for the backslide. I know it is hearwrenching. But don't beat yourself up... these kids have to take care of their teeth, too. Dental problems can lead to health issues. I wish we knew what the answer was...