dcmom

I need to do an update soon, but things are still in flux... My daughter has been on zithromax for about 1.5 years straight, daily, for pandas. Initially, it put her in remission, later we needed to do immunosuppressive treatment. She continues on a daily dose to prevent strep and other illness, and frankly because I am afraid to take her off. We recently added augmentin twice a day- for possible lyme- with no change whatsoever. I am considering moving forward with pandas treatment only (not interested in discussion on this heated topic right now). So, for you pandas parents: what do you think of 2x daily augmentin vs daily zith. Is there a benefit to either? Is there a benefit to changing it up, or keeping things the same? Does anyone add or change antibiotics when kids have or exposed to viral illness, or if they see a flare up of symptoms? My other daughter is allergic to penicillin- so we are keeping her on zith for now. Thanks! PS: my computer broke a few months ago, just replaced it today! So, I have been typing on my Iphone- that is why I have been long to reply, and short on words Can be a little more present now.

Chemar- I saw this on NPR mobile app today- very interesting- certainly something many parents seemed to have figured out on their own. Does anyone have a copy of the study from the Lancet? I am wondering exactly what type of diet restriction, and how they determined this, they used?

pandas 16- can you elaborate? My girls have only ocd, and it is frustratingly sticky at the moment....

Rockytop- I agree- my daughter has recently been corresponding (maybe with your dd?), and she feels really good about it

Philmom do you mind sharing your child's symptoms, and testing that led you to believe they have Lyme and coinfections? Thanks!

Momcap- can you discuss what type of testing and symptoms has led you to believe you have Lyme? Dabel- can you talk about what infections, and what tests you have found them with for your son? Thanks!

Dr L had a major personal tradgedy early last summer. My kids have had minor bumps when exposed to strep, that foe the most part go away a few days after exposure is removed. I would agree to wait on the steroids- we have seen a pattern; with a bump in the road, we see symptoms crop up and plateau pretty quickly. With a relapse, we see either all symptoms back overnight, or a drastic worsening day by day. See what you think is going on over the next few days. Is it a month long Rx- we have found that to be the only thing with sticking power....

PAndas16- I will answer both of your threads here- obviously this is my opinion First, just objectively/ or statistically, not every child on this forum has pandas and pandas only. Just as many/most pandas kids are misdiagnosed- it is probable that some Mather misdiagnosed into pandas. Some kids also, may have more than "just" pandas going on. Look at the huge migration to the Lyme board- what do these kids have? Maybe some are not pandas, but Lyme? I believe in pandas, as defined by Swedo- at least this is what I have seen with my kids. Both were totally "normal", with drastic onset of OCD at time of positive strep culture. Both respond well to pandas treatments. The only treatment that has brought them to 110%, however, was plasmapheresis. ( have not done ivig) I do not believe it is ever too late, however I do believe the longer a child is in an episode, the more work (therapy) may need to be done, once the medical part is fixed.

Igenex does tick testing- we had it done- it was about $200. It is on their site somewhere. Ugh. I would tell him to insist on a month of doxy from his doc to be safe. On another note- thank you for your email- I am behind in everything- but I did get it, and really appreciated it, and will update you soon

Nmom- it is so hard. I have 2 girls with pandas, same story as your son- totally normal, overnight onset, snowballing symptoms, non functional within a few weeks. ( this happened at different times within 1.5 years). Both had pex- full remission. Both have had bumps in the road (short term, flare ups of mood issues and mild OCD). Both are now fighting their way back from full relapse (did IV steroids, maybe at 75%). As for me- I am working on accepting the reality that my kids have an autoimmune disorder that is relapsing/ remitting in nature. It is not easy- I have been, at times, overwhelmed by grief and fear. But, we try to as a family - structure our life in a healthy way: support from family, not overscheduling, and most importantly, trying to find joy in every day. I also work on building a relationship with my kids, where they learn to trust and confide in me. I learn as much as I can about pandas, and I try to teach them as well. Your son got well once before- he will again. It is time for action, you can crumble later . I would call or email Dr L (be persistent). Do you know what has triggered these symptoms? Illness, strep exposure, loose teeth? What I can say is- I am a total work in progress- but I am working on accepting the illness.

Do you use frontline on the dog? We just moved to the "country" and got a puppy, last summer..... Ugh! How to keep my sanity when the thaw really begins? Oh also- damminix- tubes filled with cotton soaked in permethrin. Mice ( big carriers of ticks) take to their nest- kills ticks but not mice. (permethrin is toxic, though). Now is the time to put in your yard- I just ordered enough for .5 acre, about $80.

Colleen- you have been at this a long time, so I will leave out any thoughts on searching for underlying infection....which IMHO is sometimes (not all the time) a factor. For my kids, once the autoimmunity gets rolling- it can take a lot to stop. In some cases the month long steroid rx has done it, other times it did not. I have seen it look like it's doing nothing- but when it's done symptoms get even worse, like you describe. I suggest giving it a few days, dosing with advil- and maybe it will resolve. If things do not resolve, or start getting worse, I would consider high dose IV steroids. ( done for kids with asthma). I think this should be considered as a serious intervention- yet a step prior to ivig or pex. I have spoken with 3 neurologists about this- and they all agree. You and your daughter will be in my thoughts. Eileen

Phasmida- I agree the tools of ERP are invaluable. My daughters have been pretty open to it. We lucked out with our therapist in Dc, fist one we tried was great, really cool, laid back personality, really worked hard to establish trust with the kids. Now have moved to NJ, and having a rough time finding someone we like- have been to two. Both rushed right in with an almost confrontational style. Not all therapists do ERP, not all therapists will fit your style, and not all are created equal- so be picky, it's a lot of $$. The last thing, I think I have seen some articles that discuss the most effective form of therapy for trich is called habit reversal training. (a good friend's daughter started pulling last tear). I am sure you have seen, but there are a couple of informative websites on trich, as well. Good luck- I understand your heartache.

We really like Dr Julie Lewis at The Ross Center, which is in DC.

Fixit ugh- I so feel your pain. The only thing I can add is that I have 2 pandas kids- and EVERYTIME one of them has a loose tooth it is a problem, pandas wise. Sometimes we have seen the issues resolve, other times we have used steroids to resolve. Of course now that they have possible Lyme- it makes things more complicated. I hope you get relief soon!

We had the same experience.... $30k for pex Done for both my kids- gave them their lives back (literally) fought tooth and nail to get insurance to cover in the end they did, and their negotiated rate with the hospital was only $5k in the end $5k for my child's sanity- and insurance tries to refuse to pay.... The experience has left me quite bitter about the whole medical/ insurance industry (was happily naive before) rockytop- I am thrilled for you, for my kids (minus illness) they continued to improve! Hopefully your other daughter will see, and agree to go - my older daughter had pex after her sister, and she wanted it.

Eljomom- I haven't been to Dr B- but, over the last two years I have become very jaded I listen to doctor's OPINIONS- and take what I think applies, do my own research, and try to devise a reasonable plan of action. In the end, sometimes a doc is a means to an end; if you want antibiotics, maybe a course of steroids, and ultimately IVIG (very likely covered by insurance)- I think Dr B is your man doesn't mean he is all-knowing

We lived in DC for three years. I found that many/ most of the desirable pediatric physicians (including ped primary care) inside the beltway did not accept any insurance. We have found Dr L to be well worth the cost. I did not have luck at Children's, and I would steer clear of anyone educated at, or associated with Hopkins. It is possible to waste a lot of time and money searching for help with this disorder, if financially possible , i would see Dr L, may save you $$ in the end.

Kayanne- I agree- it is very important to look at symptoms in an overall weekly trend- healing can be sawtoothed...

Eljomom- I am going to answer your question in the context of pandas. Oh- if it were only that simple! If pandas routinely and reliably remitted after infection cleared, I think the forum would be MUCH less active. The reality is (for my girls) that the illness triggers an autoimmune response. Once this autoimmunity is triggered, it does not necessarily end when infection clears. My kids have both needed further intervention to tamp down the autoimmune component. They had pex, and have done steroid tapers.

I am debating seeing another Lyme doc- has anyone seen Dr J, formerly of the Carolinas, now in DC? Please pm me....

Kim- yes the 14 strep pneumo titers are based on having antibodies to strep pneumonae (not The strep throat bacteria) due to previous vaccination with prevnar or pneumovax. It seems like everyone that goes to Dr B comes away with the impression this means your child cannot fight strep (as in strep throat). Is this what he is saying or implying? Can anyone shed light on this?

I don't know him, but Dr Latimer is amazing, and if your brother is in the area- I can't imagine using anyone else. I would ask her to put them on her cancellation list

Most know my story- two pandas kids, possible Lyme. Went to a Lyme doc, and frankly I was somewhat underwhelmed. We are following his course of treatment- but I am not confident in diagnosis, and have no specific info on their possible prognosis. I really do not want to spend the $ to see Jones- but am feeling like we need help. For those who have seen him, please pm me: cost? Cost of tests? How frequent do you need to follow up with him? Does he clearly discuss the Lyme diagnosis, with what symptoms your child has, and their possible specific course of treatment and prognosis? The only symptom my kids have is OCD.

I think it's a spect scan that's needed....